Did you have any type of out of body experience during surge
Journal posted on April 3, 2018
I haven't seen this discussed. I've been wondering if I am going to have any type of "experience" while my heart is stopped. I'm not really sure how to ask the question. Has anyone had an out of body experience, or religious experience, or just something that was inexpiable?
Thank you for sharing.
Barbara Wood I haven't, but I know that some people, particularly older people, have post surgical hallucinations. ... Read more
Barbara Wood I haven't, but I know that some people, particularly older people, have post surgical hallucinations.
Paul Jenkins I fell asleep and seconds later I woke up post surgery. Time stops while your'e out and even though y ... Read more
Paul Jenkins I fell asleep and seconds later I woke up post surgery. Time stops while your'e out and even though your heart has stopped your'e not dead only sleeping. :-)
Deb Lewis Me neither. I think the sedation was pretty heavy duty! The first 24 hours after surgery were kind ... Read more
Deb Lewis Me neither. I think the sedation was pretty heavy duty! The first 24 hours after surgery were kind of funky- my body didn’t quite feel like mine and nuses attributed that to the after effects of the bypass experience. It may also have been about anesthesia wearing off. The whole experience was over within a day.
Gina Fiorentino Anna Jones, the nurse and the anesthesiaologist came to get me before surgery and told me she was go ... Read more
Gina Fiorentino Anna Jones, the nurse and the anesthesiaologist came to get me before surgery and told me she was going to give me something that would relax me a little. I said, ok... and don't remember anything else until the breathing tube was coming out. I opened my eyes, and it felt like I was watching it happen on TV rather than to my body (which was a little weird). But then a moment later it was over- and I was awake in the ICU and felt good, almost euphoric. (I understand coming out of Propofol anesthesia is like waking up from great sleep- as it actually puts you in REM deep sleep), and I didn't feel any real discomfort (except a mild headache and upper back ache for the first two days). I was sitting up right away and even sent out a group text with a selfie (Lord help me, I don't really remember it all TOO clearly, but it seemed appropriate at the time...lol.) When I look down at my incision now I just can't believe the surgery has happened and I'm on the other side. Brain does not compute without any recollection!
Anna Jones Thank you, Gina. I know I shouldn't worry. Everyone says the same thing... but I can't help it :-) ... Read more
Anna Jones Thank you, Gina. I know I shouldn't worry. Everyone says the same thing... but I can't help it :-) Glad you had an easy surgery and your recovery has been going well.
How important is the Hospital Tour and Movie? Also an Update
Journal posted on April 2, 2018
Hi Everyone,
Well, as many of you know, this has been a bumpy road. My cardiologist hasn't been of any help, as he is in a snit that I went against his advice and am having surgery sooner rather than later. He is very old school and would prefer that I wait until heart failure even though my left atrium and ventricle are already enlarged and I have symptoms from the regurgitation. I am working on getting a new cardiologist.
I picked Dr. Lawrie at Houston Methodist to perform the surgery. I picked him over the other surgeon that I consulted with because I didn't feel that the other surgeon had the experience that I want and Houston Methodist is a better hospital.
So, Dr. Lawrie's office is a bit uninformative. I am to have the surgery on June 5. There will be tests done ahead of time. What tests? Who knows. I will find out when I am prepped. This makes me crazy scared.
Then I keep reading about people on this board who go to the hospital ahead of time, have a talk with a nurse, a walk through the ICU, and possibly a movie to watch explaining "stuff".
How important is this pre-surgery tour of the ICU and movie? Dr. Lawrie has not suggested that I do this. His scheduler is really uncommunicative and does the least amount possible. Should I call the hospital and try to schedule it for myself? It seems that doing this for myself has been my entire experience so far.
I fully expect that on June 5, I am going to be handed the scalpel and told to perform the surgery on myself too.
Meanwhile, tomorrow I go to my GP for a pneumonia vaccination. Both the surgeon and the GP thought that might be a good idea. I had to ask about that too. It would be very nice if we were handed a check list to do.
No one has mentioned a clearance from my dentist. I saw her in Feb. and will ask if she can still give me the clearance for June just in case someone wakes up on June 5, and wants it.
Deb Lewis About a month before surgery, the surgeon’s office sent me a bunch of paperwork with information on ... Read more
Deb Lewis About a month before surgery, the surgeon’s office sent me a bunch of paperwork with information on what to expect with the type of surgery I was having, a battery of pre-op tests scheduled for 2 days pre surgery and info on the dental clearance. All this came from the same person who worked with me on scheduling the surgery— maybe you can call whoever you worked with re scheduling about what to expect/ what needs to be done
Anna Jones Thank you Deb Lewis, I've called the receptionist and left a message for the PA, and for the insuranc ... Read more
Anna Jones Thank you Deb Lewis, I've called the receptionist and left a message for the PA, and for the insurance department. No one has returned my calls yet. I will call again tomorrow. They don't seem to understand that I need to schedule flights, hotel, and make arrangements with work.
Willie Radl I never had a tour or movie. I dont think tour would be necessary but if it would put you at ease you ... Read more
Willie Radl I never had a tour or movie. I dont think tour would be necessary but if it would put you at ease you should try to have one. My experience was I only moved around about a 200 ft distance from my room the whole time I was there and 95% of the time youll be in you bed or chair resting. Probably put the t.v. on a little but you may doze in and out. Nurses were always very responsive with the call button and will help you get comfortable. Important thing is to make sure they are managing your pain and don't let them take away your pain Meds early. I had a nurse right away that was trying to get me to ween off but I had to push back. Only you know how you feel and you need to be comfortable while recovering so you can do your walking, breathing, and coughing exercises......and sleep!!
Julie Copeland You’ll get info from Houston a few weeks prior. I was emailed a link to watch some educational vid ... Read more
Julie Copeland You’ll get info from Houston a few weeks prior. I was emailed a link to watch some educational videos. My experience with Houston is to signup with mychart and email the nurses/schedulers etc. they are usually pretty prompt in returning calls/emails especially as you get closer to the date. I wouldn’t worry about a tour- you can’t change the physical hospital surroundings...presurgery tests were done day prior to my surgery- type/cross, cardiac cath, blood tests. Other test I had in prior appt included a cardiac mri, echo, ekg.
Anna Jones Thank you Julie, this is all great information.
I Want to Throw Up
Journal posted on March 29, 2018
I called and made arrangements for surgery. The date is June 5. His nurse said all tests would be done immediately prior to surgery. I asked what tests? She doesn't know. She will let me know eventually when all the arrangements have been made. She will send me an email with a map and tell me where to report and what time to be there.
If I could cry I would. In lieu of that I would like to throw up. Fear is incredibly strong.
Ed Miskovic I'm sorry to read, Anna, about what you're facing with many unexpected events and ambiguous, incomple ... Read more
Ed Miskovic I'm sorry to read, Anna, about what you're facing with many unexpected events and ambiguous, incomplete information. I cry once in awhile when facing the what-if's of life, but I swear more often, especially when driving. Pepper, my dog, doesn't swear, but she makes me want to cry after she throws-up on the rug. LOL I appreciate your sharing. Thanks.
Phyllis Petersen I was happy to read that you found a surgeon you feel you can trust. That's a big step in the right d ... Read more
Phyllis Petersen I was happy to read that you found a surgeon you feel you can trust. That's a big step in the right direction. Try not to freak when you do get the schedule of tests and meetings. I remember when I received mine from Cleveland Clinic. It was insane! Then, my insurance company denied one of the tests, but when I called my liaison at the hospital, she said the doctor will have to arrange a peer-to-peer to explain why it was necessary, but I shouldn't worry. Like I wasn't going to worry! You have a good medical facility, an experienced surgeon, and you will get through this. Make sure to plan something fun to do shortly before your surgery to give you the right frame of mind going in. It'll make a difference. I also used guided imagery to help me relax. I'm still using it from time to time when I'm feeling stressed. And feel free to vent! We've been there too.
Mark Wilbur Anna, no one can tell you how you should feel. You've shared your journey here for a long time, and ... Read more
Mark Wilbur Anna, no one can tell you how you should feel. You've shared your journey here for a long time, and you've read other people's experiences, too. I'm sure you've felt their concern as they've responded to you. If you can, embrace their love and caring, and that of your surgeon, and let the fear melt into confidence as you approach your surgery. And, like Jim Harvey reported below, plan a nice trip or other experience afterward -- something to look forward to. Everyone here wishes you well. No fear!
Barbara Wood Oh Anna, sorry to hear how scared you are...we can all relate! I've read many of your posts & replies ... Read more
Barbara Wood Oh Anna, sorry to hear how scared you are...we can all relate! I've read many of your posts & replies & you are one smart, tough cookie. I really do feel you will do very well. I agree with the comments above about planning something fun to look forward to after surgery...I did that- a walk on my favorite beach:). They did a tee right before my surgery & a urine test- neither a big deal. Sending positive thoughts your way:)!
Susan Killian My fear and panic comes and goes, when comes I just tell myself I am a warrior! Have had blood work, ... Read more
Susan Killian My fear and panic comes and goes, when comes I just tell myself I am a warrior! Have had blood work, chestvxray, a heart Cath, TEE, stress echo and urinealysis. All pre testing is done. Surgery is April 11.
Susan Killian My tests had to be done between 45 days and 1 week out.
Kelly Stoll Anna,
I am sorry to hear you are feeling this way and as others have said, you are not alone. I had a ... Read more
Kelly Stoll Anna,
I am sorry to hear you are feeling this way and as others have said, you are not alone. I had a similar reaction after scheduling my surgery and was caught off guard by the number of tests I still have to complete. Most I thought I had already done. However, none of the tests have been terrible and if doing the prep means a better outcome, I'm okay with it. Give yourself a few days to absorb all of this and treat yourself well in the meantime.
Jim Harvey Oh my gosh Anna, that seems so severe! TIme to get educated -- this website is a great source. Ask ... Read more
Jim Harvey Oh my gosh Anna, that seems so severe! TIme to get educated -- this website is a great source. Ask questions, get feedback from people who have been through it or are soon to be. Write your specific questions sown for the surgeon and send them in, ask for a call-back. There is so much information available out there, no one should be left in that position!
Rose Madura Test are no big deal. I had a heart cath, bloodwork, echocardiogram, CT scan, and gave urine. Plus ... Read more
Rose Madura Test are no big deal. I had a heart cath, bloodwork, echocardiogram, CT scan, and gave urine. Plus watched a video and met with cardiac nurse who was there to answer any questions. Try not to assume the worse.
Anna Jones Thank you, everyone. I will continue to read and post here. The surgeon's nurse sent me an email as ... Read more
Anna Jones Thank you, everyone. I will continue to read and post here. The surgeon's nurse sent me an email asking me to call her on Monday.
Hope everyone has a great Easter.
Gina Fiorentino I concur with Rose. These tests are no big deal! Simple timed walking test, echo EKG, chest xray, b ... Read more
Gina Fiorentino I concur with Rose. These tests are no big deal! Simple timed walking test, echo EKG, chest xray, blood drawn, urine sample, met with surgeon to answer questions and paperwork...
Went to See Dr. Lawrie Today
Journal posted on March 26, 2018
First and foremost, the traffic in Houston is terrible, scary, and miserable to drive in. I only got lost 6 times on my way into Houston and 1 time on my way back home. I consider this a huge accomplishment.
When Dr. Lawrie entered the room I told him I was scared. He said: "If you are "scared" that puts you well ahead of all my other patients as they all come in here "terrified". That put me immediately at ease.
He said that there is a high probability that my valve can be repaired. He said that he has repaired all of the last 1,000 valves that he worked on. He said that the cardio-thoracic surgeons, mathematicians, and statisticians have done countless studies and determined that valve repair returns life expectancy to "normal".
I was surprised when he said that repair in 95% of patients lasts 10 years and that there is a similar percentage that do not need re-operation at 20 years. I had thought that repair meant I would never need OHS again, but apparently 5% do need it.
I asked about a TEE and he said that would be part of the surgery and not done beforehand.
I asked about A-fib and he said that he expects I will be in A-fib at some point after the surgery as 50% of patients will experience it as a normal reaction to the stress from the surgery.
He is planning on a mid line sternal cut with a plastic surgery closure. He said I should only have a faint white line for a scar.
He anticipates I will be on the heart lung machine for 45 minutes to an hour.
At this point he is not sure he will need to repair my Tricuspid valve too. He will know more when he is operating on me.
I left feeling that he was my best choice for a surgeon.
And just in case you ever go to Houston Memorial Hospital, which is rated #1 in Texas and #16 nationally for cardiology and cardiac surgery... you need to remember to take your parking ticket with you. You will be expected to pay in the lobby. Then you take your receipt and put it into the automatic ticket taker at the exit to the parking garage to get the gate to open. I wish they had told me this before I left the parking ticket in the car and had to walk the million miles back and forth 4 times!
Gina Fiorentino Thanks for your update. I'm glad to hear you had a good experience today. I hope this appointment pu ... Read more
Gina Fiorentino Thanks for your update. I'm glad to hear you had a good experience today. I hope this appointment puts you more at ease as you prepare to make choices.
Mark Wilbur Great report, Anna. Having this kind of confidence in your surgeon helps tremendously.
Bonnie Stone-Hope Enjoyed reading your post, Anna.
Sorry to hear you had to walk the "million miles" 4 times. But the ... Read more
Bonnie Stone-Hope Enjoyed reading your post, Anna.
Sorry to hear you had to walk the "million miles" 4 times. But the good news is, you are now in great physical shape for your surgery!
Joni Stettner Thank you to everyone for the kind words. I had my preop appointment and tests yesterday so it’s fu ... Read more
Joni Stettner Thank you to everyone for the kind words. I had my preop appointment and tests yesterday so it’s full steam ahead. Two days from now I will have a new valve and things will be sunny. It’s just one foot in front of the other.
Anna Jones Thank you, Bonnie Stone-Hope. That is very funny :-)
Driving to Houston Monday
Journal posted on March 24, 2018
My medical records have finally made it to Houston. They could have traveled to Mars and back in the time it has taken my cardiologist to fax the records over. I now have an appointment to see Dr. Gerald Lawrie. He has an excellent reputation.
I suspect that he will also tell me that I need surgery soon. How soon, is the question. I hope I will feel comfortable with his answers as I was not entirely comfortable with the first surgeon's answers, and Dr. Accola never bothered to respond to my doctor or to me.
I am a little worried about driving in all that traffic when I am feeling this distracted. I am also a little worried about hearing what he has to say by myself. I will ask him if I can record the consultation so that I can listen to what he has to say again and again until it sinks in.
I went to see my GP. He really is a very compassionate doctor. I asked him to call Dr. Accola for me. I gave him my questions and explained what was going on. Since it was my GP and not my cardiologist who sent the referral, I hope Dr. Accola will answer the questions that my GP will ask.
No one should have to go through this. It just makes the whole experience so much worse.
Darlene Smith Anna, I didn't have a referral from a cardiologist. In fact, I didn't even have a cardiologist when ... Read more
Darlene Smith Anna, I didn't have a referral from a cardiologist. In fact, I didn't even have a cardiologist when I called the surgeon and made an appointment for a consult. I told my GP after I already had a surgery date, and he thought I totally did the right thing. So when my surgeon corresponded with my GP, everything was worded as if my GP had referred me and my surgeon kept my GP up to date on what was happening. I didn't need a cardiologist until after my surgery which was perfect for me.
Carmel Power Hi Darlene. I did exactly what you did. I wanted to make sure the surgeon who did my operation was th ... Read more
Carmel Power Hi Darlene. I did exactly what you did. I wanted to make sure the surgeon who did my operation was the most experienced with mitral valve repairs. I got a cardiologist after the surgery.
Rita Savelis GPs can be incredibly helpful.
Doctors sometimes communicate better with each other.
GPs are the one ... Read more
Rita Savelis GPs can be incredibly helpful.
Doctors sometimes communicate better with each other.
GPs are the ones who will be there for you in the months/years after surgery when the surgeon no longer sees you and the cardiologist is hard to get an appt with...
How many people here....
Journal posted on February 27, 2018
Have used a surgeon who will not speak to them until the day before surgery? In other words, you schedule your surgery and then the day before you discuss it with the surgeon and in between you are in the dark.
Susan Killian mine discussed it with the day we decided on the date. He presented the options and what he thought ... Read more
Susan Killian mine discussed it with the day we decided on the date. He presented the options and what he thought was best but was open to how I felt. He did not rush us.
Gerald Poulton I had one appointment with my surgeon prior to the day of my surgery. Basically they give you the inf ... Read more
Gerald Poulton I had one appointment with my surgeon prior to the day of my surgery. Basically they give you the info on morbidity, valve types and their pros and cons and their recommendation. Most dont keep taking appointments like other doctors, they are very busy.
Nancy Surprenant Takahashi I had 2 appointments with my surgeon so far, but he has an assistant that gave me her direct number and said to call anytime with anything or any questions. I called her once and she took my call right away.
Marie Myers I had 2 appointments with my surgeon, one about 2 months before and then 3 weeks before surgery. He a ... Read more
Marie Myers I had 2 appointments with my surgeon, one about 2 months before and then 3 weeks before surgery. He also gave me his cell phone number if I had any other questions. Thought that was great.
Elaine Phares I had one appt with my surgeon and he spent the time I needed to answer every question. After speakin ... Read more
Elaine Phares I had one appt with my surgeon and he spent the time I needed to answer every question. After speaking with my cardiologist again, I left him a message on the valve I wanted. He came in the day of surgery to see if I had any questions and confirmed my valve choice.
I guess I don't expect much more from surgeons. They have nurses, assistants and nurse practitioners for any questions or concerns. He came to visit every morning at the hospital with an Asst. Mine was exactly what I needed. He got me through this along with his great support staff.
Barbara Wood I saw my surgeon twice before surgery. I was Impressed that he had so thoroughly reviewed my individu ... Read more
Barbara Wood I saw my surgeon twice before surgery. I was Impressed that he had so thoroughly reviewed my individual case before my first interview. I had the number of his nurse & made very good use of it - I called her many times with many questions & she was fantastic. I saw him quickly each day after surgery in he hospital, but mainly dealt with his assistants, who were wonderful. I agree with Elaine, the surgeons are very busy, dealing with good staff can work very well.
Helen Daw I met twice with both of my surgeons. First time they determined that my valve was repairable and gav ... Read more
Helen Daw I met twice with both of my surgeons. First time they determined that my valve was repairable and gave me a time frame on when I should have my surgery. Second time was 3 weeks before my surgery to go over what exactly to expect and to any questions or concern and I had plenty. They do bill the insurance for these visits, so I don't understand why they wont meet with you??
Phyllis Petersen I only met my surgeon two days before surgery, but I was travelling out of town for my surgery. My ca ... Read more
Phyllis Petersen I only met my surgeon two days before surgery, but I was travelling out of town for my surgery. My cardiologist was exchanging texts and calls with him, so I wasn't too concerned. Also, Cleveland Clinic had other people who could answer many of my questions. I had so much information from this community, the other info on this site, and material on CC's site, that I had very few additional questions. The surgeon first asked me what I thought would happen if I didn't have the surgery. He went over all tests that I had, both here in Tucson and during presurgical testing there. I chose a valve in case mine couldn't be repaired, discussed the statistics, etc.
I've been fighting for the surgery, Soggy Rodent. My cardiologist did not think it was time yet. But the surgeons think it is time.
Phyllis Peterson, you have given me the idea to ask my cardiologist to phone Dr. Accola to see if he can get the answers for me. Maybe Dr. Accola will actually take the call from my cardiologist.
Gerald Poulton The cardiologist usually refers you to the surgeon, once that is done than the surgeon is usually th ... Read more
Gerald Poulton The cardiologist usually refers you to the surgeon, once that is done than the surgeon is usually the doctor in charge and it is his decision when the surgery occurs.
Anna Jones Gerald Poulton, it is a long story recorded below. My cardiologist did not believe I needed surgery. ... Read more
Anna Jones Gerald Poulton, it is a long story recorded below. My cardiologist did not believe I needed surgery. I believed that I did based on how I am feeling, my pulse, my blood pressure. He went into a snit that I was going against his more learned opinion. He said he would be embarrassed to send my tests to the surgeon. I had to beg his nurse for copies of the reports. I had to beg her to get my tests burned to CD. I had to go to my GP and have him get the referral from my insurance company for me.
I went to the surgeon that my cardiologist said would give me an honest review of my data. My cardiologist called that surgeon to apologize for wasting his time. The surgeon looked at my records. He primarily does heart transplants. He said I needed surgery soon. But he only does 40 - 50 valve repairs in a year and only gave me a 50/50 chance of repair vs replacement.
I would rather have a surgeon who does more valve repairs in a year and has more confidence that he can repair my valve.
My cardiologist remains in a snit that I was right and he was wrong, so I am going to have to change cardiologists soon. Meanwhile I am seeing my GP on Monday and will ask if he will call Dr. Accola to get my questions answered since Dr. Accola's staff will not forward my questions to the surgeon, and they want me to book the appointment and then he will only talk to me the day before surgery.
What happens if he doesn't think he can repair it either? Why would I want to have to travel to him if I am going to get the same results from my local surgeon? That's why I need some questions answered by the surgeon first. I really wish my cardiologist would start being helpful.
Phyllis Petersen What an awful dilemma for you! I hope things get straightened out soon and you can move on to plannin ... Read more
Phyllis Petersen What an awful dilemma for you! I hope things get straightened out soon and you can move on to planning surgery and recovery with confidence.
Deb Lewis I will not meet the surgeon until 2 days before the surgery. I am at peace with this. He has a great ... Read more
Deb Lewis I will not meet the surgeon until 2 days before the surgery. I am at peace with this. He has a great reputation and a to ranked hospital. I am putting my faith in the statistics!
Susan Killian My cardiologist and valve surgeon are both with the valve institute at UPMC in Pittsburgh, they work ... Read more
Susan Killian My cardiologist and valve surgeon are both with the valve institute at UPMC in Pittsburgh, they work together so that is reassuring. My cardiologist is doing my heart cath prior to my surgery.
I went to see the local surgeon that my Cardiologist referred me to. He was very nice. Unlike Dr. Accola, he met with me for an hour and answered all of my questions. He said that I had conducted the best interview he had ever had with a patient in the 30 years of his practice. He could see that I had researched extensively. He was impressed that I know about Mychobacterium Chimaera with the LivaNova PLC.
I really have to thank everyone on this site for the education you have supplied me.
He says he only does 40 - 50 repairs every year. That sounded low to me. What do you think?
He said that the probability of repairing my valve instead of replacing it is 50/50. That also sounded low to me. What do you think?
He said he agrees that despite my age, I should pick the bioprosthetic valve. He said he is not particularly fond of coumadin and its long-term risks. (I know this is a sensitive point on this board and a very personal choice, and I don't want to cause controversy). He felt that by the time I needed a valve replacement valve-in-valve would be standard procedure.
I asked about creating stenosis with multiple valve-in-valve procedures throughout the years. He said he would be more concerned if the valve-in-valves were in the Aortic position but that in the mitral position it would not be a problem.
So, that was my meeting. I digitally taped it. I came away unsure. I think I will send my reports to the surgeon in Houston for another opinion.
Deb Lewis Reading your posts, I think a 2nd opinion sounds wise— maybe one of the hospitals in the top 10 for ... Read more
Deb Lewis Reading your posts, I think a 2nd opinion sounds wise— maybe one of the hospitals in the top 10 for heart valve surgery given thatyour surgery might be some what more complicated than a single valve repair
Elaine Phares It looks as if you left your cardiologist-recommended surgeon with a great interview. We are all goin ... Read more
Elaine Phares It looks as if you left your cardiologist-recommended surgeon with a great interview. We are all going to second guess ourselves and be unsure. It's a scary endeavor and I doubt any surgeon will give you guarantees that the outcome will be perfect. I am certainly no doc, but I would think 50 repairs would be quite a bit since he more than likely does replacements and bypasses as well. I only saw one surgeon and then sent my records to one of my old neighbors who is a heart surgeon in AL who agreed with everything I had been told. I personally did not think I needed to go to a top 10 hospital and I believe there are wonderful surgeons in many hospitals. Sometimes the hype outweighs the personal attention.
Three weeks today for me and you will be surprised at how much better you will be in just this short amt. of time. Be sure to also research what's available on the other side of surgery. Cardiac Rehab has beenawesome for me and also the care in my hospital was amazing. Good luck to you.
Barbara Wood I was told an 85 percent chance & I had a pretty complex repair. , 50 percent sounds a little low, di ... Read more
Barbara Wood I was told an 85 percent chance & I had a pretty complex repair. , 50 percent sounds a little low, did he give any details as to why? Could your cardiology team steer you toward a surgeon they feel could do the repair? I do agree that there are wonderful docs & surgeons in many hospitals, not just the top 5 or 10.
Phyllis Petersen Kathy Blank and a couple of others had their mitral valves repaired in Plano, TX. I can't remember th ... Read more
Phyllis Petersen Kathy Blank and a couple of others had their mitral valves repaired in Plano, TX. I can't remember the name of the hospital, but it is supposed to be very good.
Bill H The Heart Hospital Baylor Plano, most likely. That’s where I had mine.
Anna Jones Bill H, Phyllis Petersen, my HMO doesn't allow me to go to The Heart Hospital Baylor Plano. I really ... Read more
Anna Jones Bill H, Phyllis Petersen, my HMO doesn't allow me to go to The Heart Hospital Baylor Plano. I really wish that I could. That is the problem with insurance: everyone is covered in only certain places, and our insurance is all different.
Phyllis Petersen I hear that so much and have experienced it myself. It's one of the reasons I keep my medical insuran ... Read more
Phyllis Petersen I hear that so much and have experienced it myself. It's one of the reasons I keep my medical insurance through the company I retired from, although it costs me an awful lot. There are a lot of doctors and hospitals in-network for me and I've heard horror stories from people who've changed.
Kathy Blank Yes- Phyllis is right- The Heart Hospital Baylor Plano is an exceptional place for a second or third ... Read more
Kathy Blank Yes- Phyllis is right- The Heart Hospital Baylor Plano is an exceptional place for a second or third opinion. Dr Robert Smith and Dr William Ryan are experts in MV repair/ replacement. Dr Smith does 150 Robitic MV repairs per year. I was very thankful that I took the time to get several opinions. With all the research you’ve done it is well worth additional consults!
Anna Jones Kathy Blank, my insurance does not cover the Heart Hospital Baylor Plano. Dr. Robert Smith does not ... Read more
Anna Jones Kathy Blank, my insurance does not cover the Heart Hospital Baylor Plano. Dr. Robert Smith does not accept my insurance.
Bill H Hi Phyllis - I had Dr. Robert Smith. He repaired my complicated Barlow’s mitral valve. Been over t ... Read more
Bill H Hi Phyllis - I had Dr. Robert Smith. He repaired my complicated Barlow’s mitral valve. Been over three months now and I’m feeling good and playing basketball again on Fridays.
I sent my medical records to Dr. Accola. I received a call from Kim at his office. She sounded harried and disinterested. She said that Dr. Accola agrees I need surgery. If I want further answers I can schedule the surgery and he will meet me the day before to answer questions.
He doesn't sound too interested in my surgery either. I cannot imagine going to a surgeon, having no idea what he proposes to do, what my risks might be, or having any of my other very legitimate questions answered.
I called Bonnie at his office to see if there was any way I could schedule a consultation with him. She said, and I quote "He said you need surgery what more do you want!"
I have a hard time believing that this is the super caring surgeon that I've been reading about.
Nick DeGennaro Sorry you had that experience. If he's good (and it looks like he is based on this site), I wouldn't ... Read more
Nick DeGennaro Sorry you had that experience. If he's good (and it looks like he is based on this site), I wouldn't rely on an interaction with an admin from his office to gauge how the Dr. deals with patients. Although it's definitely not a good first impression. She could be new, or having a horrible day, or just that type of person. Unfortunately for some in the medical professional our life altering news, and upcoming surgeries and procedures are old hat for them and they forget the medical field ISN'T our profession and we NEED the information in order to get through the whole thing. Sometimes I feel It's almost like going to a mechanic. "Oh yeah..you got this and that and sure sure we go in and change it out and yeah, you'll (your car) be in the hospital (shop) for a few days, but we do this all the time and you'll live to 100." Some of them lose the empathy and patience they should have with people who are struggling with the initial news and trying to reconcile everything as they go through the journey. If you're not completely done with this Dr. maybe try again and ask to speak with the office admin or whoever is in charge. May or may not be effective, but either way you'll get to your answer. I wish you the best and hope you find the right Dr. and I'm sure you'll get through everything.
Susan Killian My goodness, so opposite of my experience. My hospital has a valve center and the cardiologists and ... Read more
Susan Killian My goodness, so opposite of my experience. My hospital has a valve center and the cardiologists and the various heart surgeons meet and discuss cases. Once they decide which would be best you meet with that surgeon. He watched all my echo's and reviewed my records then just before he saw me. Was very knowledgeable about my case. My surgery is scheduled for April 11, he wants one more test before that, a heart cath to make sure there are not any artery issues to take care of while he is doing the mitral repair.
Therese ODell Hi Anna, I am so disappointed that your experience with Dr Accola was so awful! I have been so happy ... Read more
Therese ODell Hi Anna, I am so disappointed that your experience with Dr Accola was so awful! I have been so happy with him and with the hospital. I had my appointment on Monday, got my stitches out along with a good report! Yay! I did notice on Monday that Kim (his nurse) seemed a little frazzled or something. Wasn't as friendly as she had been. Dr Accola was kind and answered all my questions and didn't "hurry" me. I met with him one time before my surgery when he spent about an hour with me answering questions and then I didn't see him again until the morning of the surgery. If you would like to talk my email is odelltherese@aol.com. I will answer any questions you may have regarding my experience with him or just about the surgery. Apparently my valve had moved from severe to critical with little to no movement. That was a little scary!
Phyllis Petersen Wow! I'm sorry you've had such a horrible experience. He's well thought of, but you have to feel comf ... Read more
Phyllis Petersen Wow! I'm sorry you've had such a horrible experience. He's well thought of, but you have to feel comfortable with everyone on his team. This is such a scary procedure and you need to be able to ask all your questions and feel supported.
Anna Jones Phyllis Petersen, you have given me the idea in the post above this one, to see if my Cardiologist ca ... Read more
Anna Jones Phyllis Petersen, you have given me the idea in the post above this one, to see if my Cardiologist can speak to Dr. Accola and get the answers for me. Maybe he will have more respect for someone with a medical degree.
Question about Doctors When You Travel For Surgery
Journal posted on February 24, 2018
Hi Everyone,
If you traveled to have your surgery, and you stayed until you were well enough to travel home:
1. What did you do about seeing a Cardiologist in your surgical city? Did you just use the emergency room at the hospital in the event of trouble?
Therese ODell Hi Anna,
I go back to see Dr Accola on Monday. I had hoped to see someone here in St Pete but he wan ... Read more
Therese ODell Hi Anna,
I go back to see Dr Accola on Monday. I had hoped to see someone here in St Pete but he wanted to see me again. It will be 3 weeks on Tuesday since my surgery.
Anna Jones Therese, I hope you get a great report from Dr. Accola. When are you planning to return home?
Shannon Gray Hi! Thankfully, my emergency was while I was still in a hotel awaiting my clearance to go home. I did ... Read more
Shannon Gray Hi! Thankfully, my emergency was while I was still in a hotel awaiting my clearance to go home. I did have a another incident while I was back home, and I just went to the ER where my local cardiologist practices. My local cardiologist has been wonderful to correspond with my Cleveland Clinic cardiologist. I also travel back to Cleveland once a year for a check in... for now.
Lilly Black My surgeon fortunately was 150 miles away driving distance. I rented an Airbnb for 3 weeks, which was ... Read more
Lilly Black My surgeon fortunately was 150 miles away driving distance. I rented an Airbnb for 3 weeks, which was very helpful. My son stayed with me as his job at the time was mobile. My surgeon and I are in touch by text and phone. For regular check up I have a local cardiologist but my surgeon is my main doctor. He knows me inside out and I trust him implicitly. Hope you find the care you need as well! ✌️🤞
Bonnie Stone-Hope Hello Anna,
I will see my surgeon on March 27th, surgery was December 20th. Received a referral to c ... Read more
Bonnie Stone-Hope Hello Anna,
I will see my surgeon on March 27th, surgery was December 20th. Received a referral to cardiologist from surgeon. You might request a referral in your hometown so more convenient.
Anna Jones Thank you, Bonnie. It is a long story, but it will be better for me to be away from home.
Phyllis Petersen I was able to stay with a cousin an hour and a half south of Cleveland Clinic, so was able to go back ... Read more
Phyllis Petersen I was able to stay with a cousin an hour and a half south of Cleveland Clinic, so was able to go back to CC for follow-up and again when one of my incisions burst open. If anything happened after I came back to Tucson, I would have called my cardiologist here and followed his advice. I also had the option to call CC at anytime should I have questions.
Another Step Forward
Journal posted on February 21, 2018
Things are moving along. One of the surgeons I want to speak with is Dr. Accola in Orlando, FL. I am not living in Orlando and yesterday my insurance company called me to say that I cannot see Dr. Accola because he is more than 100 miles away. They asked why I wanted to see a surgeon so distant. I responded that he is a top surgeon in the type of heart surgery that I need. The insurance company replied that everyone naturally wants to see top surgeons but that isn't a good enough response (huh, that had me a little dumbfounded).
I said that I wanted to see Dr. Accola because he is very experienced in heart valve repair instead of replacement. That repair would require one surgery in my life. That replacement would require multiple surgeries thoughout my life. So, it is in the best interest financially for the insurance company to allow me to see a surgeon who can repair my heart.
The Insurance company told me to have my PCP call them to discuss this further. I spent the whole night worrying and praying.
Meanwhile, today, before I had a chance to talk to my PCP, I received a call from Dr. Accola's office saying that my referral had been approved!
I will send Dr. Accola my information overnight tomorrow so that he can review it on Monday. Next week I see the other surgeon.
Gina Fiorentino I am celebrating this victory with you. I recently went through something very similar, and for me i ... Read more
Gina Fiorentino I am celebrating this victory with you. I recently went through something very similar, and for me it was also super important to create the ability to choose my heart valve surgeon.
Anna Jones Gina, I'm so glad you were able to pick the surgeon in whom you feel most confidence. Congratulation ... Read more
Anna Jones Gina, I'm so glad you were able to pick the surgeon in whom you feel most confidence. Congratulations on winning your war and best wishes for an easy surgery and recovery.
Helen Daw My experience with my insurance was a little different. I get insurance from my small employer and th ... Read more
Helen Daw My experience with my insurance was a little different. I get insurance from my small employer and they were in the process to switch insurance companies. When I found out that my surgeon was not in network with the new one that they wanted to switch to, I complained and my boss listened. They stayed with the current insurance till I get my surgery. I am forever grateful to my boss. Humanity does exists in this world.
Debra Langford I am so glad you were approved to see Dr Accola. He did my Mitral valve repair 1 week ago today. He i ... Read more
Debra Langford I am so glad you were approved to see Dr Accola. He did my Mitral valve repair 1 week ago today. He is among the best and I absolutely love him and his team. I came home yesterday. Good luck!
Anna Jones Helen, that is really wonderful news and so heartwarming. There are good people in this world and I ... Read more
Anna Jones Helen, that is really wonderful news and so heartwarming. There are good people in this world and I am very glad your boss is among them. Best wishes for your continued improvement and good health going forward.
Anna Jones Thank you, Debra. I have been following your story because you had Dr. Accola! I am so glad that yo ... Read more
Anna Jones Thank you, Debra. I have been following your story because you had Dr. Accola! I am so glad that you are home now and wish you an easy recovery and good health.
Therese ODell Anna! So happy you got approval! I think you will love Dr Accola. He is such a kind man and has an ... Read more
Therese ODell Anna! So happy you got approval! I think you will love Dr Accola. He is such a kind man and has an amazing reputation at the hospital. People would come in my room and say " wow! You are doing really well, who was your surgeon?" I would say Dr Accola and their response was " well that explains that!" You are going to be fine whoever you choose because you have the Lord who goes before you fighting your battle!
Anna Jones Thank you, Therese. I am very happy to see that you are well enough to post. I've been looking to s ... Read more
Anna Jones Thank you, Therese. I am very happy to see that you are well enough to post. I've been looking to see how you are doing, and praying for a sign that all is well with you.
List of Questions for Surgeons
Journal posted on February 17, 2018
I am getting ready to make the appointments to talk to the surgeons who I am considering. I have written down my questions. Good Grief, I have 52 questions so far! Does this seem too excessive? Are surgeons generally patient enough to answer 52 questions?
One would think that performing a surgery that is going to last hours, the surgeon would find answering 52 questions only a blip in time.
Gee whiz, I am nervous.
Kelly Stoll I met with the first surgeon last week. I had a list too, though really we ended up discussing my top ... Read more
Kelly Stoll I met with the first surgeon last week. I had a list too, though really we ended up discussing my top 10. I told the nurse on the way in how nervous I was and she was right...ask whatever you need to and know you can call later or meet with them again. Trust your gut. You'll find out pretty quick if you feel there is a chance of working with them or if you need to consider someone else. Best wishes.
Bonnie Stone-Hope Hi Anna,
You should get all your questions answered to feel comfortable. However, you may have some ... Read more
Bonnie Stone-Hope Hi Anna,
You should get all your questions answered to feel comfortable. However, you may have some questions that might not need to be answered by the surgeon. I only had a list of 10 questions for the surgeon, but called the surgical coordinator for possibly 10 other questions, which were not specific to that surgeon but rather the surgery itself.
Rose Madura We had a list of questions but the surgeon answered them all before we had to ask. I think they prob ... Read more
Rose Madura We had a list of questions but the surgeon answered them all before we had to ask. I think they probably get the same questions asked all the time. Before we saw the surgeon, the Physician assistant cane in. He/She may be able to look at your list and answer most of them saving a few for the surgeon. Just a thought.
Has anyone bought a digital voice recorder to record the meetings you have with the surgeons? I thought it might be a good idea to be able to listen to what they have to say over and over and over again.
Gina Fiorentino Hi Anna, I have a Smart Phone ( Samsung Note 5) and used the video option to record my meetings with ... Read more
Gina Fiorentino Hi Anna, I have a Smart Phone ( Samsung Note 5) and used the video option to record my meetings with 2 different surgeons. I found it very helpful for clarification when I listened to the surgeon answer my list of questions.
Eric Stromerson We thought of that. Downloaded an app for our phone. But we asked our surgeon if he would mind and he ... Read more
Eric Stromerson We thought of that. Downloaded an app for our phone. But we asked our surgeon if he would mind and he said he'd prefer that we didn't record our meeting. So I guess it depends on the surgeon.
Anna Jones Thank you. Hopefully I will be allowed to record our meeting as I will be going alone to it.
Elaine Phares I didn't record anything , but everything we discussed was put in writing, my cardiologist even calle ... Read more
Elaine Phares I didn't record anything , but everything we discussed was put in writing, my cardiologist even called to see if I had any questions not answered by the surgeon. On the way home, every directive was in writing as well,
What are the next steps?
Journal posted on February 14, 2018
For those ahead of me on this journey, it has taken two weeks but I finally have copies of my heart cath and echo burned to CD. My primary care doctor is supposed to refer me to 3 surgeons for their opinions. I have given my PCP the names of the surgeons I want him to refer.
I will then send the CDs and reports to the surgeons.
What happens after that? Do I get a call from the surgeons offices asking for more tests? Or, do I get a call from the surgeon giving me his thoughts? Or, am I told that I need to travel to their office to review things... at which point I ask my questions and come back home? I would have to fly to meet each of the surgeons.
Any insight you can give me into this process would be very helpful. Thank you.
Phyllis Petersen My cardiologist's office handled everything for me. He coordinated testing with the surgeon, but my p ... Read more
Phyllis Petersen My cardiologist's office handled everything for me. He coordinated testing with the surgeon, but my preferred surgeon said he would do it, so I didn't have to deal with more than one.
Dan Marcantel I can tell you one thing do your due diligence and research every surgeon. Don't pick one just on ref ... Read more
Dan Marcantel I can tell you one thing do your due diligence and research every surgeon. Don't pick one just on referral if you can meet them all meet them. If You don't feel comfortable go to the next one. Research! research! research! Had I gone to the 1st surgeon I was refereed to I don't think I'd be doing as good as I am today.
I ended up going to Mayo in AZ and could not have been happier with the outcomes.
Anna Jones Thank you, Dan. These are my choices of surgeons from the research I have done so far. I am on the n ... Read more
Anna Jones Thank you, Dan. These are my choices of surgeons from the research I have done so far. I am on the next leg of my research which is to find out what is the next thing to happen after I send the surgeons my data.
I'm glad you are doing well, as it gives the rest of us much hope for similar outcomes.
Willie Radl I have just gone through similar process and am planned for surgery Apr 4. My experience was that I ... Read more
Willie Radl I have just gone through similar process and am planned for surgery Apr 4. My experience was that I sent my records to the different hospitals and the Surgeons would review and then their nurse would contact me with a quick brief of the surgeons opinion. (This was same for Cleveland Clinic and Mayo which are high volume hospitals). The review was rather informal, the nurse generally would offer to set up a consultation with the surgeon for a face to face. I sat down face to face with 3 surgeons and had a 4th take a look remotely, I did not travel to that location as it would require a flight. I ended up going with the surgeon I felt most comfortable with and who respected my desires. It does take a little effort on your part to follow up with the hospitals, these surgeons are busy so be prepared to wait a week or two for them to call you back. Good luck.
Bob Fessler I set up appointments to have a face to face with the surgeons after they had time to review my recor ... Read more
Bob Fessler I set up appointments to have a face to face with the surgeons after they had time to review my records. I think the only way you can make a choice is to talk to him/her in person.
I haven't seen this mentioned before, so just in case anyone else is going through it, here are some tips.
I had my heart catherization. It is clear. Between the echo and the heart cath my Cardiologist/Interventionist proclaimed my mitral valve prolapse has severe regurgitation. I have symptoms but my heart is "compensating nicely". The Cardiologist has said that he expects that I will soon start A-fib which he hopes to control with medications.
I heard the word "A-fib" and decided that surgery prior to A-fib might be the best idea... even though my Cardiologist wants me to continue waiting... despite my many symptoms.
My Cardiologist said that to get the opinion of a surgeon I will need my heart cath burned to CD. A patient cannot get the heart cath burned to CD just because you ask for it. Your doctor has to request it. So, I called his nurse and she got the CDs for me. Tip 1: get your heart cath burned to CD at the time of your procedure and get a copy of the written report to keep in your records.
I then called the Surgeons I picked. I was told that I also need to get the latest Echo burned to CD. So Tip 2: get your Echo burned to CD at the time you have it and get a copy of the written report. You never know when you will need it. I have called my Cardiologist's office and requested they get the Echo for me and also send me the written report.
I am going to send his nurse a box of chocolate for all that she has done for me. I am sure at this point she must cringe every time she hears my voice.
My insurance is like an HMO. So, I need a referral. I wasn't sure who to get the referral from so I called my insurance company. I was told they had no idea! They are the insurance company, what do they mean they "don't know"?! So, I called the surgeons I picked. They told me to get the referral from my primary care physician. Tip 3: Get referrals if you need them.
I'm not sure why this is taking so long to do. I haven't read about anyone else jumping through hoops to see a surgeon. I keep wondering if God is trying to tell me something.
Bonnie Stone-Hope Hi Anna,
Sorry to hear that this is taking so long for you. Good to hear that your cath. results ar ... Read more
Bonnie Stone-Hope Hi Anna,
Sorry to hear that this is taking so long for you. Good to hear that your cath. results are clear.
Gina Fiorentino Anna, I do understand and have gone through that myself. Especially with the copies of the ECHO and ... Read more
Gina Fiorentino Anna, I do understand and have gone through that myself. Especially with the copies of the ECHO and TEE CD's...
I just left an affordable health care HMO to get into an expensive PPO plan that allows me to choose the surgeon I feel comfortable with. It has been like getting a mini college education learning how to navigate the system. I got a crash course of reality with the HMO option- and while the Insurance I had covered the basics, I was not able to get the surgeons published outcomes or number of successful valve in writing. Thankfully, I followed good recommendations I found online and in Adam's book that guided me toward a trusted surgeon at a high volume valve surgery hosipital in my area that has had very successful outcome rates. I am wishing the same success for you in finding your way through. Trust, there IS a path through...
Therese ODell Ugggh, it's all so frustrating! I am so sorry you are having so much trouble! I have been blessed b ... Read more
Therese ODell Ugggh, it's all so frustrating! I am so sorry you are having so much trouble! I have been blessed because my best friend works in a director's position at my insurance company and she has navigated the system for me. I think I would have been very frustrated if I had to figure it all out myself!
Diane T So much aggravation and for what?! This is great info to share -- I'm sure it will help others. I, fo ... Read more
Diane T So much aggravation and for what?! This is great info to share -- I'm sure it will help others. I, for one, am really proud of you for advocating for yourself. I'm sure all of the obstacles are draining at the time you least need it, but you've been doing everything right. You go, girl!
Seeing Cardiologist Today
Journal posted on January 26, 2018
I'm going to ask him to send my test results to the surgeons I have picked.
Therese ODell Praying for you Anna. Go ahead and cry! It will relieve some of the tension. Let me know how your ... Read more
Therese ODell Praying for you Anna. Go ahead and cry! It will relieve some of the tension. Let me know how your appointment goes.
Just remember God is faithful and He knows the right surgeon, the right hospital and the right time. He loves you!
Anna Jones Thank you, Therese. He has been pointing me very strongly to Dr. Accola. So, Dr. Accola is the firs ... Read more
Anna Jones Thank you, Therese. He has been pointing me very strongly to Dr. Accola. So, Dr. Accola is the first surgeon on the list. But, I felt I needed to do my due diligence and talk to 3 surgeons. Your prayers and reminder are appreciated.
How are you doing? My prayers are with you too.
Debra Langford Dr Accola is a good choice. He’s my surgeon on February 15. I’ve done my research on him I’m v ... Read more
Debra Langford Dr Accola is a good choice. He’s my surgeon on February 15. I’ve done my research on him I’m very confident that I have the right surgeon. Where do you live?
Anna Jones Hi Debra, I am in Texas. I would be flying to Orlando. I am originally from Orlando, so essentially ... Read more
Anna Jones Hi Debra, I am in Texas. I would be flying to Orlando. I am originally from Orlando, so essentially, I feel like I would be going home to have my surgery.
Anna Jones So, I met with my Cardiologist this AM. He told me that my mitral regurgitation is definitely severe ... Read more
Anna Jones So, I met with my Cardiologist this AM. He told me that my mitral regurgitation is definitely severe. He acknowledges my symptoms. My left atrium is enlarged. However, he said my heart is compensating well and he does not recommend surgery at this time. He wants to see me in 3 months. He is changing my medications and putting me back on the
lisinopril which makes me really ill. He said he will give me a lower dose but being on an Ace Inhibitor and a beta blocker are very important right now and he wants me to have a low blood pressure. Last time I was on both of these medications I was fainting constantly.
I said that I don't like this hanging over my head. I asked what I can expect to happen next. The Cardiologist said that he is expecting that I will eventually go into A-fib and he is hoping to be able to control that through medications.
I said I didn't want to wait until I am in A-fib, that I would like to avoid further issues with my heart. Since we know that I am going to need the surgery I thought I should have it while I am still relatively healthy.
He said this is a difficult experience to go through and that I should put it off as long as possible.
I said I didn't want to become an emergency surgery. He said that wouldn't happen. But he sees I am worried so he said I should request the heart catherization be burned to CD and sent to me. He also printed out a report that I can give to a local surgeon. He gave me the names of two local surgeons that he trusts.
I called the hospital. They said a patient cannot just order a CD of their own procedure. The order has to come from my Cardiologist. Nothing is ever easy. I called my Cardiologist's nurse and have left her a message requesting the paperwork to get the CD.
Rita Savelis I'm sorry that you have to go through with this Anna, and it's terrible to not have doctors that you ... Read more
Rita Savelis I'm sorry that you have to go through with this Anna, and it's terrible to not have doctors that you trust. But I also think that surgery should be put off as long as possible in many cases...
Austin or Houston Surgeon
Journal posted on January 24, 2018
Hi, did anyone have surgery in Austin or Houston, TX? If so, who was your surgeon?
Would you recommend them?
Kathy Blank See my past below- Dr Robert Smith at The Heart Hospital Baylor Plano has extensive experience with M ... Read more
Kathy Blank See my past below- Dr Robert Smith at The Heart Hospital Baylor Plano has extensive experience with MV Repair- it is a beautiful state of the art hospital just north of Dallas. There you stay in one guest suite and they bring the ICU to you so the post surgical care is top notch.
Anna Jones Thank you Kathy. My insurance doesn't cover The Heart Hospital Baylor Plano. I've looked several ti ... Read more
Anna Jones Thank you Kathy. My insurance doesn't cover The Heart Hospital Baylor Plano. I've looked several times.
Julie Copeland I just had surgery 1/16 for AVR & MVR at Houston Methodist- overall it’s been a great experience! ... Read more
Julie Copeland I just had surgery 1/16 for AVR & MVR at Houston Methodist- overall it’s been a great experience! Loved the dr and surgeons. I felt I received great care. they open a new state of the art cardiac icu very soon!
Have you ever overruled your Cardiologist?
Journal posted on January 23, 2018
I have a mitral valve prolapse. My regurgitation is severe. I have swelling in my ankles. I am so very tired constantly. My heart hurts. My blood pressure is all over the map. Sometimes it is high. Sometimes it is low. My pulse ranges between 75 and 90 at rest.
According to my heart catherization my effusion rate is 65%.
I really feel it is time to speak to a surgeon. My cardiologist said it is too soon because of my effusion rate and he wants to see me again in 6 months.
I don't know... have you ever just insisted the cardiologist send your test results to a surgeon instead of listening to him? I worry about waiting too long and the Cardiologist keeps telling me I am not waiting long enough.
Civita Fahey you have every right to get a second opinion whether it be a new cardiologist or a surgeon. After all ... Read more
Civita Fahey you have every right to get a second opinion whether it be a new cardiologist or a surgeon. After all this your life, you make the choices.. Good luck
Bonnie Stone-Hope Hello Anna,
Very frustrating for you! When I had my echocardiogram done, showing mitral valve prolap ... Read more
Bonnie Stone-Hope Hello Anna,
Very frustrating for you! When I had my echocardiogram done, showing mitral valve prolapse and severe regurgitation, my family physician referred me (urgently) to a cardiac surgeon, bypassing a cardiologist. Solution for this issue, as I was advised, is surgery. It sounds like you have symptoms, ankle edema and fatigue. What would be the harm for you to be referred to a surgeon who can discuss with you the best plan for you?
Debra Langford I agree with everyone else. Get a second opinion. Or just insist your cardiologist refer you to a sur ... Read more
Debra Langford I agree with everyone else. Get a second opinion. Or just insist your cardiologist refer you to a surgeon who can then make the determination. Your symptoms seem worse than mine and I am scheduled for surgery In February. Because my regurgitation is severe my atria is enlarged. This may have been avoided if done sooner. My previous doctor didn’t refer me to a cardiologist when it was moderate, so here I am. Hindsight is 20/20. I wish I knew then what I know now.’ This is your life! Good luck!
Therese ODell Definitely, get a second opinion! Your symptoms are worse than mine and all three surgeons I saw sai ... Read more
Therese ODell Definitely, get a second opinion! Your symptoms are worse than mine and all three surgeons I saw said no more waiting! It can't hurt to talk to the surgeon, even if he agrees with the cardiologist, it will put your mind at ease. (As much at ease as possible!)
It never hurts to see a surgeon. Even if surgery isn't needed now, you should really meet with one a ... Read more
It never hurts to see a surgeon. Even if surgery isn't needed now, you should really meet with one at least to see if you feel confident in him. My cardiologist says I should have minimally invasive due to health history. I don't agree. Saw a heart surgeon and he agrees with me. I would hate to wait until it's time to start looking for a surgeon of your choice.
Anna Jones Thank you, Everyone. I will speak to him on Friday when I see him.
Soggy Rodent Both my cardiologist and surgeon poo-pooed my symptoms. I was actually told that I shouldn't be havin ... Read more
Soggy Rodent Both my cardiologist and surgeon poo-pooed my symptoms. I was actually told that I shouldn't be having those symptoms. I was easily out of breath, woke up short of breath, and had chest pain. I finally went to the ER crying that nobody would listen to me. Finally the surgeon begrudgingly agreed to do the surgery. When I awoke from surgery, my surgeon was standing in front of me and the first thing he did was apologize. My valve was way worse than he had ever imagined. U know ur body better than anybody. Sometimes we have to be very aggressive to get what we know we need.
Steve Farthing If your insurance does not require a referral, you can make an appointment with a cardiac surgeon. O ... Read more
Steve Farthing If your insurance does not require a referral, you can make an appointment with a cardiac surgeon. Or even more than one surgeon. Try the surgeon finder on this website. Or visit another cardiologist.
Kathy Blank I had 2 differing opinions w cardiologists and then had 3 consults with surgeons. The surgeons gave m ... Read more
Kathy Blank I had 2 differing opinions w cardiologists and then had 3 consults with surgeons. The surgeons gave me the most detailed info- especially if they are experienced in your particular valve issue. There is risk of permanent heart damage if you wait too long. Dr Rober Smith at The Heart Hospital Baylor Plano (near Dallas) is an exceptional surgeon and very skilled with mitral valve repair!
Heart Cath
Journal posted on January 23, 2018
I had my heart cath yesterday. For those who are worried (like me) it is really pain-free and easy.
I arrived at 6:00 AM for the procedure at 9:00 AM. They did a chest X-ray. They took some blood. They hooked me up to an IV. They wheeled me into the lab. The lab is very cold. But there was a warming bed that blows warm air all around you, and that was lovely. They gave me an injection of anti-anxiety medication. They shaved me. The doctor came in a did his thing. There was a large TV so that I could see what the doctor saw. He was watching the TV too.
After about 20 minutes he gave me his verdict. My veins and arteries are clear. My effusion rate is 65%. I'm good to go for another 6 months. Then they wheeled me back to the waiting area and I stayed in bed for 4 hours.
If you are going to be there through lunch, make sure you ask to have some finger food sent up to you. I read a book. There was a TV in my space. There was also a wonderful patient heating system which was a long tube with hot air flowing out of it. The nurse put it under my covers and I was toasty warm the whole time I was there.
Therese ODell Doing pretty good. Feeling peaceful 99.9 percent of the time. Have fleeting moments of anxiety but ... Read more
Therese ODell Doing pretty good. Feeling peaceful 99.9 percent of the time. Have fleeting moments of anxiety but overall doing well. So the heart Cath wasn't bad? Did they try going through your wrist? I am so glad you did well with it! I am hoping it is as easy for Me! Did you decide to talk to a surgeon?
Food after Surgery
Journal posted on January 20, 2018
In line with Debra Langford's post, I got to wondering what types of foods did you feel like eating once you got home from the hospital? Was soup the preferred meal, or were you up to eating sandwiches, salads, and regular entrees for dinner.... assuming there was someone to prepare it for you? I'm assuming we want things that are easy to freeze.
Bonnie Stone-Hope Not much of an appetite, so only wanted soup. However, I was aware that I needed protein for healing ... Read more
Bonnie Stone-Hope Not much of an appetite, so only wanted soup. However, I was aware that I needed protein for healing so had individual high-protein yogurts, nuts, handy for snacks.
Gerald Poulton I always have a good appetite and did when I got home but keep in mind that your system goes through ... Read more
Gerald Poulton I always have a good appetite and did when I got home but keep in mind that your system goes through a lot of stress so start slow. Soup is good but I had to add a sandwich as well. I started eating good in the hospital as well but a bout of duodenitis slowed me down, eat what you feel comfortable with, in the hospital we had full meals.
Rita Savelis Oh, gosh I only really wanted soup for the first weeks. The hospital was serving full-on meals which ... Read more
Rita Savelis Oh, gosh I only really wanted soup for the first weeks. The hospital was serving full-on meals which completely surprised me (I was told that many patients want to eat - not my experience at all...).
I remember having a full meal arrive in ICU! It was the last thing I wanted and really turned me off.
A month later my appetite slowly came back and whenever I had an urge for something specific, I went out to find it...
Julie Copeland I enjoy the stews and soups, chilled fruit cups, salads, breakfast foods, even warm sandwiches. I lo ... Read more
Julie Copeland I enjoy the stews and soups, chilled fruit cups, salads, breakfast foods, even warm sandwiches. I loved a dish of orange sherbert occasionally but I’m not diabetic. I was not into coffee much about 3 months prior to surgery and so far the craving hasn’t really returned. I love tea though (iced and hot)
Barbara Wood Like Bonnie I ate mostly yogurt, nuts- plus peanut butter crackers, smoothies, oatmeal & ensure. My ... Read more
Barbara Wood Like Bonnie I ate mostly yogurt, nuts- plus peanut butter crackers, smoothies, oatmeal & ensure. My appetite was nil for at least a month & I lost my taste for coffee for a few months too.
So, this is an embarrassing question. Men.... please close your eyes! The hospital called. They said my heart cath is now on Monday since I had the flu last Monday. The male nurse talking to me told me not to shave. I was so surprised I didn't ask:
1. Has anyone else been told this?
2. Where am I not supposed to shave.... my legs? or a private part? or both?
3. For how long before the heart cath am I not supposed to shave?
I asked the cardiologist and he said he would be going through my groin area.
Not to state the obvious, but I don't want to do this.
Kim Shuba I was told the same thing, my cath was done through the groin area. I do believe they do not want us ... Read more
Kim Shuba I was told the same thing, my cath was done through the groin area. I do believe they do not want us to shave "down there" so they can shave and make sure the area is clean and sterile. The Cath wasn't that bad. There was pressure at first, (think of it as getting a tooth pulled, that type of pressure) then it was gone, after that is when the cardiologist inserts the dye, you will have a warming sensation, like you peed yourself. You will do great!
Phyllis Petersen Hahaha! Men often have to have even more shaved! They do not escape. And for them, it's often the fir ... Read more
Phyllis Petersen Hahaha! Men often have to have even more shaved! They do not escape. And for them, it's often the first time. I think they don't want to risk you nicking yourself and possibly introducing bacteria in the area. I may be one of the very few people who didn't have to have a cath before surgery, and you all make me very thankful that my cardiologist said it was necessary for me.
Debra Langford My heart cath was done via the radial artery but they still shaved the area around the femoral artery ... Read more
Debra Langford My heart cath was done via the radial artery but they still shaved the area around the femoral artery just in case the radial didn’t work. I think they want it to be sterile and don’t want any accidental cuts from inexperienced shavers. Lol
Rita Savelis Yes, they'd rather you did not shave yourself around the groin area as they are afraid of nicks and c ... Read more
Rita Savelis Yes, they'd rather you did not shave yourself around the groin area as they are afraid of nicks and cuts.
Prepping for surgery usually involves shaving where one MIGHT need it. So I had my arm (wrist area) and groin prepared (just a bit of shaving on the side where they planned to possibly go in) beforehand because the interventionist had not decided where it would be more optimal to go in on me.
It turned out to be the groin. It's on the side.
Don't worry. It's not as bad as one imagines.
Don't shave your pubes (if that's what you do) for the few days preceding the procedure.
There is a lot of weird stuff that goes on in hospital that one can be unprepared for. You should ASK questions when you don't understand what is going on, what they mean, why. Don't be embarassed. Medical professionals are used to questions.
Bob Gillespie For my cath they were going through the radial in my right arm, but I got 'shaved' from my naval to m ... Read more
Bob Gillespie For my cath they were going through the radial in my right arm, but I got 'shaved' from my naval to my knee on the right side. For the OHS, I was shaved from nipple to nipple all the way down past the groin. They didn't use a shaving razor, just electric clippers that cut real close. And yes the purpose is to not nick the skin. The purpose for such a wide swath is they apply the sterile wrap to the skin and the hair just gets in the way.
Rita Savelis Good news for women: no shaving of the chest!
However women do have other experiences specific to the ... Read more
Rita Savelis Good news for women: no shaving of the chest!
However women do have other experiences specific to their gender such as surgical bras, and getting their periods unexpectedly in ICU....
Phyllis Petersen I know I shouldn't, but I really did laugh out loud reading this thread.
Anna Jones Just in case anyone else wants an answer to the above questions: Homograft valves (human-donated) a ... Read more
Anna Jones Just in case anyone else wants an answer to the above questions: Homograft valves (human-donated) are only used for aortic replacement. My surgeon said they do not last as long as porcine or bovine vales.
Miracle on Main Street
Journal posted on December 30, 2017
This morning I was taking my usual walk along a busy main street when suddenly I hear a commotion behind me. A 5 month old Great Dane puppy had darted out of a side street and was running down the main street with two little children running behind it. Well, it was obvious these kids were not going to catch the dog by chasing behind it.
Since I was ahead of the dog I turned around and began running as fast as I could toward the dog while darting side to side to try to keep it away from the street, and when I got close enough I lunged and tackled the puppy.
Since the dog had no collar and no leash the children and I decided the best thing to do would be for all of us to carry it home.... all 80 lbs of it! All the while the children were telling me this puppy was their Christmas gift. It would have been so much more helpful if they had been given a miniature schnauzer instead.
I'm very surprised to report that despite my severe osteoporosis none of my bones were broken in the tackle; and despite my wonky mitral valve I didn't have a heart attack either!
Therese ODell You are so sweet! So glad you survived that adventure completely intact! Just wanted to let you kno ... Read more
Therese ODell You are so sweet! So glad you survived that adventure completely intact! Just wanted to let you know that I bit the bullet and scheduled my Surgery! The surgery will be on February 6th and the angiogram February 5th. I think I am more apprehensive about the angiogram than the surgery right now. For some reason it really creeps me out!
Feeling a sense of relief that it's all scheduled on one hand but nervous on the other. So many emotions! Hope you had a wonderful Christmas and wishing you a happy New Year!
Debra Langford Great save! I’ll bet the kids were happy you helped out.
Fitbit
Journal posted on December 16, 2017
Is anyone using a Fitbit to track your heart rate and sleep patterns? If so, which model are you using? Are you satisfied with the accuracy of the heart rate results?
Therese ODell Hi Anna, I use the charge 2 and find it to be pretty accurate. Not sure about the accuracy of the sl ... Read more
Therese ODell Hi Anna, I use the charge 2 and find it to be pretty accurate. Not sure about the accuracy of the sleep feature but I think the heart rate measurements are good. I like it better than the Alta HR because the face is larger and easier to read.
Anna, I also have a charge 2 fit bit. I think the heart rate monitor is pretty accurate. My mother in ... Read more
Anna, I also have a charge 2 fit bit. I think the heart rate monitor is pretty accurate. My mother in law has the alta and has a hard time reading hers it is so small. I love mine.
Bonnie Stone-Hope Hi Anna, I use the charge 2 fit bit and find the heart rate accurate and the results are interesting! ... Read more
Bonnie Stone-Hope Hi Anna, I use the charge 2 fit bit and find the heart rate accurate and the results are interesting! My heart rate, to date, is fine UNTIL going up stairs, then....way too fast!
Adam Pick I was addicted to the FitBit for a couple years. Then, I switched over the Apple iWatch. I really en ... Read more
I'm no Richard Simmons. I'm also no Body by Jake or Tony Horton (from P90-X). I'm just a guy who wants to live a healthy life. So, on December 31,
John Dodson Hi Anna I also have the charge 2 - love it, I think it is pretty accurate.
Civita Fahey I have a Charge HR.. they are pretty accurate at rest, though when I was doing cardiac rehab they wer ... Read more
Civita Fahey I have a Charge HR.. they are pretty accurate at rest, though when I was doing cardiac rehab they were off by 20 beats or more. but to know how much you have moved and to get an average of the HR its pretty good.. like Adam I may switch to an apple watch, but thats a bit busy for me. too many apps.. lol.
Phyllis Petersen I just started with the Alta HR and although it's small, I can read it okay. For sleep and patterns, ... Read more
Phyllis Petersen I just started with the Alta HR and although it's small, I can read it okay. For sleep and patterns, etc. I check the app on my phone which connects with my FitBit. It's keeping me honest! I found the benchmarks for sleep to be very interesting. I'm apparently sleeping better than most women my age most nights.
Mark Wilbur I received a Charge 2 from my wife last summer as a birthday present and have been wearing it virtual ... Read more
Mark Wilbur I received a Charge 2 from my wife last summer as a birthday present and have been wearing it virtually 24/7 since. I am pre-aortic valve surgery; my cardiologist has advised me to keep my heart rate below a certain level. For ordinary activity I find the Fitbit to be satisfactory, but not for more strenuous activities like lawn mowing, or exercising. For that, I also use a Polar heart rate monitor that utilizes a chest strap which is more accurate and provides a much faster response than does the wrist strap Fitbit. I compared the two and found they both reported HR within acceptable tolerance for ordinary activities. But, as noted above, there can be a significant difference in the readings between the two when exercising. Sometimes I can feel my heartbeat and know that it's faster than what the Fitbit says, confirming by a manual timing of the pulse. So, my conclusion is this: Fitbit's ok for routine activities; but, use a heart rate monitor with a chest strap when doing strenuous activities for a more accurate reading. The sleep function is interesting and I followed it for a while and check it periodically, but it's not 100% either.
Sandy Laine I have a charge 2 as well - and during cardiac rehab found that the heart rate on the fitbit did NOT ... Read more
Sandy Laine I have a charge 2 as well - and during cardiac rehab found that the heart rate on the fitbit did NOT match with either the pulse oximeter or the mini-ekg. I have been trying to figure out why sometimes the fitbit is way higher, and sometimes way lower - I think we determined that the fitbit is not accurate when in possible a-fib. Can't figure out why sometimes it's way higher, and sometimes way lower (and sometimes pretty close). At rest - it usually matches well with other devices.
Debra Langford I got a Fitbit Charge 2 for Christmas and I think it’s pretty accurate. I like being able to monito ... Read more
Debra Langford I got a Fitbit Charge 2 for Christmas and I think it’s pretty accurate. I like being able to monitor my heart rate since I’m supposed to be “taking it easy”.
A minor update
Journal posted on November 22, 2017
When I went to see my cardiologist he said that he didn't like my blood pressure which was so low I was fainting like a Victorian maiden. Apparently fainting is not considered chic anymore. He has taken me off the Lisinopril and halved my Atenolol. I'm happy to report I am feeling better.
Meanwhile, he wants me to schedule a cardiac catheterization. I asked if I could do it in January after the holidays and he said that would be OK. His nurse keeps calling to schedule it but I told her I don't want to think about it just yet.... I am a coward.
I keep hoping that it was the medication that was causing all the trouble and in reality I am fine and dandy, and my medical records were mixed up with someone else's and this has all be a horrible mistake.
Marie Myers Don't fear the cardiac cath! I was pretty nervous about it, but I have to say it was not bad at all. ... Read more
Marie Myers Don't fear the cardiac cath! I was pretty nervous about it, but I have to say it was not bad at all. I got a little sedation, and I remember bits and pieces, with no pain...
Daryl McCallum It was nothing...but it did find my bad Aortic valve thank god
Lilly Black You can run but you can't hide....be sure you get yourself checked out, Anna...I know what you mean t ... Read more
Lilly Black You can run but you can't hide....be sure you get yourself checked out, Anna...I know what you mean though :( ... but better safe than sorry. Happy Thanksgiving :)
Gerald Poulton Hi Anna, just book a date so that you can get in, if it was the medication you will know long before ... Read more
Gerald Poulton Hi Anna, just book a date so that you can get in, if it was the medication you will know long before January and can cancel the surgery. I agree with Lilly, we cant hide from our problems we have to deal with them. All the best
Catie B Anna, I was terrified of the cath because I had a couple bad ones in the 70s. It's not the 70s anymo ... Read more
Catie B Anna, I was terrified of the cath because I had a couple bad ones in the 70s. It's not the 70s anymore, lol. It turned out to be cake. Hope you'll get 'er done soon!!
Back from the Hospital
Journal posted on October 25, 2017
The Interventionist found a blockage in his right coronary artery. It was so blocked that the Interventionist said he was unable to get the catheter through his artery. This may explain the problems he was having breathing. He's been complaining about getting air into his lungs for a year or more. He now has another stent. I suspect we narrowly avoided a heart attack.
At this rate the Interventionist has said we can expect to have to do a heart bypass eventually.
It's been an emotionally exhausting day. I'm going to bed.
Catie B I'll bet you are toast. So sorry for all the stress, but I'm glad they finally identified and treated ... Read more
Catie B I'll bet you are toast. So sorry for all the stress, but I'm glad they finally identified and treated his issue. Take care of you, too.
Stuff
Journal posted on October 23, 2017
I'm trying to figure out how to handle being alone at the hospital. I would be traveling there by myself. That means, at the least. I will need a suitcase, my cell phone, my wallet, a credit card, drivers license, insurance card.
Where would I keep these things safely when I am in surgery, then in ICU, then in step down, then in a room, then have to be transferred to a rehab hospital or hotel until I can travel? How will I plug in my cell phone to recharge it... if I can even get it back?
I know I should probably be thinking of the bigger picture, but this detail is worrying me.
Betty Atwater I have exactly the same questions, Anna. I believe that some hospitals have a "safe room" in an admi ... Read more
Betty Atwater I have exactly the same questions, Anna. I believe that some hospitals have a "safe room" in an administrative area where valuables such as a suitcase can be stored. But that doesn't speak to the access we want and need as patients for important items such as cell phone, eyeglasses, hearing aids, wallet, etc. Even if a family member or friend is with you at the hospital, they don't usually stay all night (or even for the full lday) and you'd need or want some of those personal items with you all the time. How do you keep them safe? Any suggestions from others??
Gerald Poulton The city where I had my operation had what they call a heart house, it was much cheaper than a hotel ... Read more
Gerald Poulton The city where I had my operation had what they call a heart house, it was much cheaper than a hotel and everyone staying there was a spouse,of someone in for a heart operation, we stayed there the night before surgery and my wife stayed there while I was in the hospital, if they have one in your city they may be able to help you out. Try calling the cardiac unit in your hospital, they usually know the answers to the questions.
Cathy Zuber Hi Anna, I wasn't alone for surgery and hospital stay..I am a widow..My daughter and friends were ar ... Read more
Cathy Zuber Hi Anna, I wasn't alone for surgery and hospital stay..I am a widow..My daughter and friends were around. I have been hospitalized many times for AFIB. I don't worry about my suitcase..it is in the closet in the room. My hearing aids, I kept in a small Rubbermaid container at nite..my glasses were on my tray stand by my bed. my cell phone and IPad also. There are plugs in the room for your charger cords. Nurses are used to us patients using cell phones and tablets. Call the Cardiac Unit at yr hospital..they can help you and give you hints. I haven't had one problem with "missing" property. Good wishes for you...
Rita Savelis The hospital staff will help you. You can already ask them this question ahead of time. Your belongin ... Read more
Rita Savelis The hospital staff will help you. You can already ask them this question ahead of time. Your belongings will most probably be kept in a locked compartment until you need them. You won't need anything in surgery or ICU. Then your belongings will be transferred with you to a regular room.
Wishing you the best.
Anna Jones Thank you, everyone. This has helped. Sometimes the details worry me the most.
Catie B Anna, the hotel had a secure area for patients' belongings where I left my suitcase. Before my surger ... Read more
Catie B Anna, the hotel had a secure area for patients' belongings where I left my suitcase. Before my surgery I took my purse and carry on bag (including my eyeglasses) to the hospital administration's specified room where they locked it up. No cell phones were allowed to be used when I was in ICU, so I couldn't have mine there. I can't remember whether I asked someone to get my glasses while I was in ICU. They sent a staff member to retrieve my purse and carry on for me once I was in the step down unit and asked for them. By that time I could walk a bit and could plug my phone in, but I could have rung for help had I needed someone to connect it. I had no concern for the safety of my items while I had to go walk the halls, etc. I took my purse along when I had to leave the room to get imaging done.
Wishing you the best!
Gerald Poulton That was good thinking though Anna, sonetimes the small details are what trip us up, so good for you ... Read more
Gerald Poulton That was good thinking though Anna, sonetimes the small details are what trip us up, so good for you for being proactive 👍
Ruth Howell Contact the hospital ahead of time and ask them about putting your items in their safe. I am very sur ... Read more
Ruth Howell Contact the hospital ahead of time and ask them about putting your items in their safe. I am very sure they make provisions for instances such as this.
Darlene Smith My hospital took my wallet and cell phone and locked it up until I requested them be returned. It wa ... Read more
Darlene Smith My hospital took my wallet and cell phone and locked it up until I requested them be returned. It was a very detailed process, almost annoying, but they were more concerned than I was. BTW, I would not bring a suitcase. You won't need much while there. Clothes for when discharged, chap stick, comb, toothbrush, face cleanser, ear plugs. Your room should have a place for you to plug in your charger.
Husband Update
Journal posted on October 20, 2017
My husband failed his Stress Echo. He has bought himself yet another visit to the cath lab. This time the cardiologist "isn't sure" what he is looking for. I am reminded of a year ago, when we went through the same thing and I posted about it at that time.
Bonnie Stone-Hope It is a good thing that they are keeping a close watch on him.
Catie B Sorry you guys are going through this again, Anna! Hoping for the best report possible when he has th ... Read more
Catie B Sorry you guys are going through this again, Anna! Hoping for the best report possible when he has the cath.
Margot Swann Scary stuff to have to endure additional testing when you think it’s been all fixed. Prayers for ... Read more
Margot Swann Scary stuff to have to endure additional testing when you think it’s been all fixed. Prayers for both of you and wisdom for the docs.
It is so difficult being on both sides of heart disease
Journal posted on October 11, 2017
The cardiologist called. My husband is taking my appointment because it is the soonest. I will take his appointment because the Cardiologist hasn't looked at my Echo test results yet, and is now away on vacation. It is so very difficult being both the caretaker and the sick spouse at the same time.
Thank you, Adam, for creating this board. It is the only place I can come and show fear.
Catie B I've never had an echo when I didn't get the results the same day. I'm so sorry your doctor left you ... Read more
Catie B I've never had an echo when I didn't get the results the same day. I'm so sorry your doctor left you hanging and has gone on vacation! That's got to be stressful. When does he return?
Anna Jones Thanks, Catie. He should be back in time for next week's appointment with my husband.
Phyllis Petersen Aaaaagh! So much on your plate right now. How long is the cardiologist gone for and why couldn't he l ... Read more
Phyllis Petersen Aaaaagh! So much on your plate right now. How long is the cardiologist gone for and why couldn't he look at your echo before going? The last thing either of you need is more stress. Hopefully, this is all straightened out soon, so you can plan what needs to be done.
Anna Jones Thanks, Phyllis. We are going for my husband's appointment on Friday, to see what is wrong now. The ... Read more
Anna Jones Thanks, Phyllis. We are going for my husband's appointment on Friday, to see what is wrong now. The Cardiologist's nurse called to say that his blood work came back with a "red flag" warning, but she said she couldn't release the results to me until the doctor signed off on them. She did say his CPK is really high.
Based upon this blind information, I've gone ahead and scheduled an appointment with his Rheumatologist for after Friday. Since the Rheumatologist also has access to his lab work I figured someone would call if something was urgent
I had my Echo on Oct. 4. My appointment with my Cardiologist to review the latest Echo is Oct. 20. I have this little game I play. If the Cardiologist's nurse doesn't call within 2 days after the Echo to say I need to come in IMMEDIATELY, I figure I am home free for another 6 months.
My husband had his Stress Echo yesterday. His appointment with the Cardiologist to review his results is Nov. 3. I play the same game with him.
I basically sit on pins and needles until the allotted time passes. The Cardiologist's Nurse called today to say my husband needs to come in IMMEDIATELY. His EKG is showing changes. But she couldn't find a time for him since the doctor's schedule is packed. So I offered to switch appointments with my husband. He could take my Oct. 20, appointment and I will take his Nov. 3, appointment.
Then the nurse says that the doctor is looking over my Echo tonight and she will call me in the morning to tell me which one of us is the worst and should come in on the Oct. 20 appointment. She will let me know when there is a cancellation and the other of us will take the cancelled appointment. Because we are NOT to wait until November.
So now I'm not sure what to worry about. Should I worry that I am the worst or should I worry that my husband is the worst?
This just isn't easy.
Marie Myers Hard as it is, you shouldn't worry at all. The doc will make the decision for you and let you know wh ... Read more
Marie Myers Hard as it is, you shouldn't worry at all. The doc will make the decision for you and let you know what the best plan will be... Besides, another appointment may open up just in time...
Gerald Poulton From someone that has just gone through it, I understand worry and fear but you guys have enough on y ... Read more
Gerald Poulton From someone that has just gone through it, I understand worry and fear but you guys have enough on your plate and worry and fear only compounds and makes it worse. If it us serious I am sure they will find an appointmrnt for you 👍
Anna Jones Thank you, both, for speaking sense to me.
Cynthia Pagiatakis I see you are taking care to have everything in place, and that is great. Another idea, though, might ... Read more
Cynthia Pagiatakis I see you are taking care to have everything in place, and that is great. Another idea, though, might be to work on stress reduction for both or you. We had a speaker address my cardiac rehab class on stress. How about doing a little research online re: calming your spirit a bit? By the way, here is the answer to your final question: don't stress out over any of this, if possible. We'll be thinking of you!
Bonnie Stone-Hope So, have you seen the movie "Bridge of Spies" starring Tom Hanks? The main phrase I quote to myself ... Read more
Bonnie Stone-Hope So, have you seen the movie "Bridge of Spies" starring Tom Hanks? The main phrase I quote to myself from that movie when tempted to worry is...................
"Would it help" if I worry? Usually the answer is 'no'.
So, not sure if this tidbit will help alleviate some of your concerns, but hope it does.
Well... I am starting my annual worry about surgery. I've just had my latest Echo and am waiting for the results. I will see my Cardiologist later this month unless he calls to tell me to come in quickly. I called my insurance carrier and was told that I will be covered at the Cleveland Clinic or at The Mount Sinai Hospital. So, that is good news.
Given that The Cleveland Clinic is 1400 miles from where I live and Mt Sinai Hospital is 1800 miles from where I live... this seems like a difficult complication, especially as I would be traveling alone and don't know anyone in Ohio or New York.
The surgeon and hospital that my Cardiologist is recommending is a 4 hour car drive away and I would still be by myself.
For those of you who traveled a long distance: how did you get back home after the surgery?
I'm wondering if I should hire a home health aide to visit me in the hospital several times a day just to make sure that I am being taken care of and have everything I need, and so the staff sees that I am being checked on. Do you think I need to do this?
Thank you for any suggestions you can provide. As always, your answers are invaluable.
Steve Farthing You can probably also ask CC or Sinai for a staff social worker to check-in on you during your stay.
Catie B I flew to Cleveland and back alone from Tx and stayed in an on-campus hotel afterward a few extra day ... Read more
Catie B I flew to Cleveland and back alone from Tx and stayed in an on-campus hotel afterward a few extra days, Anna. Not easy but it can be done. CC provides free airport limousine service for heart-surgery patients and they can help set up/change travel plans. The surgeon's nurse practitioner can be very helpful with tips for navigating the ordeal. I was well cared for in the hospital and afterward with some complications.
Anna Jones Thank you, Catie. I just read your journal. I think I am going to change my mind about CC. I hope y ... Read more
Anna Jones Thank you, Catie. I just read your journal. I think I am going to change my mind about CC. I hope you are doing much better these days.
Sheila Ann When my Cleveland Clinic surgeon's office called last week to schedule mine she asked if anyone woul ... Read more
Sheila Ann When my Cleveland Clinic surgeon's office called last week to schedule mine she asked if anyone would be with me. Since there probably won't be, she said she they have people who can be with me during all the day before tests and meetings (anestesia team and dr.) as well as after, for comfort and help.
Anna Jones Thank you, Sheila Ann. Sending best wishes for a gentle hands to care for you.
Cynthia Pagiatakis You won't feel lonely while in the hospital ~ there will be a visitor at least every 2 hours. We wen ... Read more
Cynthia Pagiatakis You won't feel lonely while in the hospital ~ there will be a visitor at least every 2 hours. We went to Brigham (the patient room is set up to accommodate family or friends), and it helped my husband avoid traffic in Boston. However, he became really stressed, which then stressed me! When he left a few days before my discharge, I was relieved, in a good way.
Update posted on...
August 8, 2017
Hi Everyone. I'm starting to plan for the surgery. I've been told by my cardiologist that I will have to go to Houston for it. So, I'm thinking that as long as I have to travel, I might as well check out surgeons in different areas. How does one do that?
Does insurance pay for us to meet with different surgeons to see who we want to use?
If we wind up using a surgeon who is out of network because they are in a different city, how do we find out how much more it will cost for the surgery?
I'm a little worried about being 4 hours away from my surgeon after the surgery when I return home. Was that a problem for you?
Jill Krajnovich I traveled to Cleveland for my surgery which is about 5 hours from my home. I first confirmed that th ... Read more
Jill Krajnovich I traveled to Cleveland for my surgery which is about 5 hours from my home. I first confirmed that the Cleveland Clinic was in our network. I then sent my records for a records review which I believe they did free of charge as I never received a bill. They then contacted me. The information about doing a record review is on their website and is a simple process. As they are #1 in the country for heart surgery, I felt it was worth getting their opinion and as it turned out, they could do the surgery with a smaller incision than either of the two local surgeons I had consulted with. It worked out well for me.
Barbara Wood Hi Anna, I also have an HMO, so was limited to hospitals & surgeons in my network. If I had gone out ... Read more
Barbara Wood Hi Anna, I also have an HMO, so was limited to hospitals & surgeons in my network. If I had gone out of network my insurance co wouldn't have covered any it, but this varies I believe- some insurance plans will pay partially for out of network. You would want to call your co. to check. I chose to stay in network & met with 3 surgeons. Insurance paid for this. I was completely confident in my choice & the whole thing worked out very well even though it was not at a big 5 heart hospital. My total bill came to $89,000- surgery & hospital stay ( I was sorting out my paperwork yesterday:)). Of course I was only responsible for my deductible!
Catie B Anna, every insurance policy is different. You'll need to look at yours closely or call and ask. The ... Read more
Catie B Anna, every insurance policy is different. You'll need to look at yours closely or call and ask. The insurance I had let me go to Cleveland and paid for both of my surgeon consultations. (By contrast, the insurance I currently have would have required me to stay local if I wished to have them pay the maximum.)
When I returned home, my cardiologist, GP, and an electrophysiologist took care of my needs; I really didn't need a surgeon during recovery.
Lynda Ruiz When I found this site, right after my dr said I needed a valve replacement, I researched hospitals a ... Read more
Lynda Ruiz When I found this site, right after my dr said I needed a valve replacement, I researched hospitals and doctors. I came up with Dr Ryan in Plano TX and Baylor Heart Hospital Plano. One part of that decision was having family in Plano. I contacted Dr Ryan's office and had so much help from Tammy, the scheduler. Since my dad was also going to be having valve replacement (TAVR) I wanted to be there for that, then have my surgery (OHS). She said she could work with that, got my insurance info to check out and when my dad had his date, I called back. She scheduled me right on the phone for Pre-op labs & dr visit as well as a surgery date. I brought all my records, paper & disks, when I got to TX 2 weeks before my surgery so they had time to review before my appt. The surgeon actually found another problem that my local cardiologist had not mentioned. At that point I could continue if I was satisfied or go home and take another route (never considered local hospital). I liked the dr, his experience and the hospital rating so I went ahead and was very pleased with the whole experience. It was also comforting that all my family was there.
Anna Jones Thank you, everyone. I will call my insurance company to find out what I have to do to get consultat ... Read more
Anna Jones Thank you, everyone. I will call my insurance company to find out what I have to do to get consultations with multiple surgeons. I will also look into the Baylor Heart Hospital in Plano.
Still far away but getting closer
Journal posted on April 9, 2017
I went to see the cardiologist this week. He has scheduled my next echo. I seem to live my life in 6-month increments. He has not changed my medications. I take that as good news. He did tell me the name of the surgeon he is going to want me to use. He also said he is going to send me to Houston for the surgery. This is the first time we have actually discussed things in detail... I think that means it is getting closer.
Thank you to everyone who posts here. I do read this site, though I don't often respond as I think I don't yet have much I can contribute.
It's been a rough two weeks. My husband had his appointment at the cath lab. During the procedure he had a problem. His chest felt tight and he couldn't get air into his lungs. The Interventionist suspected a heart attack. My husband was rushed upstairs to the cardiac care unit where they X-rayed his chest (I am still wondering what they were looking for with an X-ray), put him on monitors for respiration, pulse, EKG, O2, blood pressure, and checked his heart enzymes (blood work) every 2 hours for change. He was sent for an MRI and an echo. I was sitting in the room reliving the heart attack that killed my first husband. The nurses kept telling me they had no answers every time I asked a question. The cardiologist was reassuring. He said he thought it was an allergic reaction. They elected to keep him in the hospital for two days to monitor him. When they released him they told him not to lift anything heavy for 1 week, no driving for 1 week, and no working for 1 week.
Keeping him quiet was a battle. He is well. I am shattered.
Ellen Leng So sorry you and he had to experience this. Good news that it wasn't a heart attack, but a scary time ... Read more
Ellen Leng So sorry you and he had to experience this. Good news that it wasn't a heart attack, but a scary time for sure
Rita Savelis Partners, like yourself, and caretakers go through so much that the patients themselves can't underst ... Read more
Rita Savelis Partners, like yourself, and caretakers go through so much that the patients themselves can't understand. I feel for you, Anna, being shattered by this horrible experience where your questions couldn't be answered and your past traumas were relived. It can take time to process what you have been through. Being vocal and writing about it can help.
Take care.
Anna Jones Thank you, Ellen and Rita. I very much appreciate your thoughts.
Results
Journal posted on October 5, 2016
I received a call from the Cardiologist's nurse. The cardiologist now did not want us waiting until this Thursday. We were to come in today. Nothing like giving me a heart attack from fearing his news. This morning we drove to our appointment to hear the news. It was a very quiet drive. The doctor chose to give me my news first... which was probably a good idea as I was about to jump out of my skin. He said that he is expecting that I am going to start having arrhythmia due to the mitral valve prolapse and he wants me to go to the emergency room as soon as it happens. I am also to call and make an appointment as soon as the arrhythmia starts and he will decide at that time if I am ready for surgery. He said that with a mitral vale prolapse changes can be very slow or very fast. He is putting me on an ACE inhibitor. He is seeing me again in 6 months.
My husband's news was not as good. He has an appointment at the cath lab. I have begun praying and pretending that I am calm. My husband is doing better then me... unless he is pretending too.
Civita Fahey Anna I pray all goes well with your husband and you..
Phyllis Petersen What an emotional rollercoaster! Praying that all goes well with both of you.
Meredith Bray I did a lot of pretending. I think it's a normal coping mechanism.
-Meredith
Cardiologist Call
Journal posted on October 3, 2016
So my husband and I went in for our tests. I had the echo. He had the echo and echo stress. Today I received a call. Our appointments with the Cardiologist have been moved up from the end of the month to this Thursday. That is never a good sign.
Corey Sines Wow, both you at the same time! Good Luck and best wishes.
Anna Jones Thank you, Corey. Best wishes to you too.
Ellen Leng Agree...wow. I wouldn't recommend doing this at the same time....don't know what I'd do if I didn't t ... Read more
Ellen Leng Agree...wow. I wouldn't recommend doing this at the same time....don't know what I'd do if I didn't think have a caregiver at home...
Cardiologist Visit
Journal posted on September 14, 2016
I had my appointment with my new cardiologist. I was very impressed with him and feel more confidence in him than I did with any of my prior cardiologists. He has reviewed the past 3 years of my Echocardiograms and MRIs. He said that he was concerned because the reports are contradictory. He said some reports are saying my heart chamber is enlarged and others are saying it is not enlarged. He has scheduled me for a new echo and I overheard him telling the nurse to make sure that I have someone with lots of experience working on me. I am schedule for the test at the end of the month.
I meet with the cardiologist again at the end of next month to review the latest test results.
Phyllis Petersen Wow! You've really been through the wringer. I can only imagine how anxious you must be with all this ... Read more
Phyllis Petersen Wow! You've really been through the wringer. I can only imagine how anxious you must be with all this contradictory information. Good luck! I hope that you can get a definitive diagnosis, so you can either relax and monitor, or prepare if necessary.
Steven A Husted i am glad you found someone who gives you more confidence
Catie B Having someone you can place your confidence in makes a huge difference, so I'm glad you found better ... Read more
Catie B Having someone you can place your confidence in makes a huge difference, so I'm glad you found better care. I needed to change cardiologists earlier this year and breathed a sigh of relief to land in good hands. I hope the new echo will give him a very clear picture, so he can best help you.
Barbara Laurie Anna! Sometimes finding a good cardiologist is so hard! So glad you're confident now. Echoes are quit ... Read more
Barbara Laurie Anna! Sometimes finding a good cardiologist is so hard! So glad you're confident now. Echoes are quite challenging, not only do we need seasoned techs, but seasoned Dr's who can READ them⚡️Between my two OHS my husband said the Dr's were disagreeing about whether my valve was leaking a lot, or a little, made a huge difference at the time! Until other circumstances made them have to do another surgery. SO, it's awesome to have the smartest guy you can find on your side. Best, best ,best to you💞❤️💞
Anna Jones Thank you, everyone. I really appreciate your support.
I'm Back
Journal posted on August 31, 2016
Well, it's been a ride, and I am back! I had my first DEXA for osteoporosis. Apparently I have little to no bones left. I am very young for this. I've been started on Forteo, which means I have to give myself a daily injection (Sub-Q). I don't like this at all.
I was wondering how the Osteoporosis is going to affect my mitral valve surgery when the times comes so I called to make an appointment with my cardiologist. The next thing I know, I received a letter in the mail. It told me that my cardiologist had closed the office and if I wanted my medical records I could call an 800 number! Have you ever tried to get your medical records from an 800 number? It is not possible.
This left me frantic. So I began researching and I have found a cardiologist who is also an Interventionist. I called his office to schedule a new patient appointment and during that call was put through to their Medical Records Department. I was told that I absolutely cannot have an appointment with the cardiologist unless I have my medical records. I had never heard anything like this before. So, I explained that I couldn't get my records. I had tried and tried. The Medical Records Clerk said that he would try for me and asked for my social security number. I gave it to him and he said that they already have me in their system from 2007!
It turns out that my cardiologist was with this group in 2007 but she left and I left with her. Now this group has undergone changes and has a new name, new cardiologists, and a new address, but they still have my old records. They are going to try to get updated records on me.
I see them in about a week. Please wish me luck as I am very worried that my old cardiologist was wrong and I do need the surgery soon. And I'm worried that my bones can't handle the surgery.
Amy Dorsey Prayers for you. I would recommend you start working with some weights to help your bone density if ... Read more
Amy Dorsey Prayers for you. I would recommend you start working with some weights to help your bone density if you have not started already. If you're worried about that, hire a personal trainer...specifically one with experience in osteoporosis. It will be a wise investment in your health and especially for your bones. All women need resistance training for this very reason. You can reverse the affects of osteoporosis with this over time. I'm a trainer so I deal with this a lot. 💗💗💗
Corey Sines That's great information Amy, I never would have put that together!!
Cardiac MRI Report
Journal posted on January 19, 2016
I went to see the cardiologist to hear the report on my cardiac MRI. The cardiologist said that my regurgitation isn't high enough yet for me to need surgery. I'm not sure why she scared the heck out of me last month telling me I was finally bad enough to need the surgery. I am so happy she was wrong.
Wishing everyone much success with their heart health.
Anna Jones Thank you, W. Carter. I really appreciate all the support you gave me.
Congrats for now, Anna! I had a similar scare in 2010. My cardiologist was telling me to prepare for ... Read more
Congrats for now, Anna! I had a similar scare in 2010. My cardiologist was telling me to prepare for surgery and when I had my cath they said my valve function was fine! :) Five years later I had surgery. Best wishes to you!
Anna Jones Thank you, Laura. And thank you for all of the information you have been sharing with me. I very mu ... Read more
Anna Jones Thank you, Laura. And thank you for all of the information you have been sharing with me. I very much appreciate it.
Liz Burroughs That's great news! I hope you continue to do well.
Anna Jones Thank you, Liz. Thank you for sharing your story with me and best wishes.
Thank you for all your support, Anna. I appreciate having you on this site to process everything! If ... Read more
Thank you for all your support, Anna. I appreciate having you on this site to process everything! If you ever end up at the Heart Hospital in Plano, let me know!
Anna Jones I will, Laura. Maybe one day we will be able to get together outside of heart stuff too. My favorit ... Read more
Anna Jones I will, Laura. Maybe one day we will be able to get together outside of heart stuff too. My favorite restaurant is Seasons 52 and I've been begging my husband to take me to Dallas or Plano to eat there. Anyway, lets continue to chat. I can send you my email address through this site I think.
Sophia Ridley Anna, great news and may it continue! If it does turn, you know where we are and that you're probably ... Read more
Sophia Ridley Anna, great news and may it continue! If it does turn, you know where we are and that you're probably the most prepared non-pre-op person in Texas!! Sounds like you should be celebrating at your favourite restaurant!
Anna Jones Thank you Sophia. I really appreciate your encouragement. I did tell my husband that we should have ... Read more
Anna Jones Thank you Sophia. I really appreciate your encouragement. I did tell my husband that we should have gone out to eat for dinner! No luck though, we ate at home.
How do I get a second option from a surgeon in another city?
Journal posted on January 16, 2016
Two weeks ago I had my cardiac MRI. I will be seeing my cardiologist on Tuesday to get my report. Meanwhile, I am giving consideration to going to Plano for the surgery and would like to know how I go about talking to a surgeon when I don't live in the city.
Do I call and then send my records and discuss it over the phone?
Do I travel there to speak to the surgeon in person (even though it would be a very long trip)?
Do I ask my Cardiologist to pick the surgeon in the different city?
Hey Anna, I had my surgery in Plano at the Heart Hospital at Baylor. The surgeon's practice that I us ... Read more
Hey Anna, I had my surgery in Plano at the Heart Hospital at Baylor. The surgeon's practice that I used is Cardiac Surgery Specialists. Dr. William Brinkman was my surgeon and the practice has lots of great surgeons. The number for the practice is: 469-800-6200. I would call them and see what they say. I am guessing they will want to meet with you in person and assess you beforehand, but I don't know for sure.
Anna Jones Thank you Laura, I think on Monday I will call my insurance company to find out how I go about talki ... Read more
Anna Jones Thank you Laura, I think on Monday I will call my insurance company to find out how I go about talking to multiple surgeons. I really want minimally invasive robotic assisted surgery, if possible. But, I don't think we have a surgeon here who uses the robot.
Good luck. I saw two different surgeons and my insurance covered it (but insurance can be criminal so ... Read more
Good luck. I saw two different surgeons and my insurance covered it (but insurance can be criminal sometimes so you are smart to check).
Cheryl Batzing Anna, I also had MVR surgery in Plano, but didn't do the robotic...did the side-entry "minimally inva ... Read more
Cheryl Batzing Anna, I also had MVR surgery in Plano, but didn't do the robotic...did the side-entry "minimally invasive." There is one surgeon in the practice Laura mentioned who is highly trained with the robot...I almost went with him, but was very happy with my surgeon. Baylor Heart Hospital Plano is an excellent choice and you will be well cared of there! Where do you live?
I went for a complete physical the other day. I have one annually. This time I told the doctor that I was going to be scheduled for surgery so she really did a thorough review. She just called to ask for another urine sample. There is an issue... she wouldn't say what. She also said I am pre diabetic. So now I am counting my carbs, sugar, salt. I am falling apart! Giving up chocolate is a real blow for me. It is about the only thing that was going to get me through this with some sanity left. I will go to pick up my test results and send them to the cardiologist to see if I can still have the cardiac MRI on Jan. 7.
Whitney Nelson Bless! That's usually how it happens! When it rains it pours! You'll be ok though and I love chocolat ... Read more
Whitney Nelson Bless! That's usually how it happens! When it rains it pours! You'll be ok though and I love chocolate but am trying to lose weight before surgery so I live off of sugar free fudge pops!
SO sorry, Anna. How frustrating considering all the other stuff you are going through. I felt like th ... Read more
SO sorry, Anna. How frustrating considering all the other stuff you are going through. I felt like things were falling apart right before my surgery. So much so that I told my husband that if anything else happened, I felt as if I was going to have a nervous breakdown. I have never been so on edge before in my life. Luckily, things have gotten better. 21 day fix is a great diet/lifestyle that emphasizes clean eating. I just made peanut butter chocolate chip muffins (carb free) and even my kids choose those over chocolate. Also, like Whitney said, sugar free items are tolerable. I ate a ton of sugar free chocolate pudding when I left the hospital. When you have surgery, they will be testing your blood sugar a lot so if you have the opportunity to get it under control now before surgery, do it. This could ultimately be a gift in many ways.
Cathy Slipski I'm so sorry Anna! Keep your chin up and try to stay positive. I know easier said than done but we ar ... Read more
Cathy Slipski I'm so sorry Anna! Keep your chin up and try to stay positive. I know easier said than done but we are all praying for you.
Anna Jones Thank you, Everyone. I think everything piling up is getting to me. Laura, I will look up the 21 da ... Read more
Anna Jones Thank you, Everyone. I think everything piling up is getting to me. Laura, I will look up the 21 day fix on the Internet. My husband is diabetic, so we have low-everything type of foods, and I am vegetarian so that probably helps to... but I do love my carbs.
Cathy Moseley I love chocolate too and have tried to figure out how to get it without the sugar. I've found some r ... Read more
Cathy Moseley I love chocolate too and have tried to figure out how to get it without the sugar. I've found some really good recipes but I'm now probably used to less sugar. The key for me is to find really good cocoa powder ( Penzys is one). I add it to everything and it satisfies my chocolate craving. There's even a recipe where you use cocoa powder, stevia and I think either water or milk and heat it and it ends up being a hot fudge sauce. So there are ways . Look on Pinterest.
I agree with Cathy. Pinterest has great recipes. I have a 21 day fix board. Good luck and you will ge ... Read more
I agree with Cathy. Pinterest has great recipes. I have a 21 day fix board. Good luck and you will get through this!!
Sophia Ridley I've found post surgery that cakes, biscuits, chocolate bars and sugary puddings will give me a dizzy ... Read more
Sophia Ridley I've found post surgery that cakes, biscuits, chocolate bars and sugary puddings will give me a dizzy headache so I've had to go cold turkey! I can have a chunk of chocolate or one biscuit but no more :( Found that fruit squash drinks have to be weak or has same effect. Blood sugar testing doesn't show any problems, I had gestational diabetes during pregnancy so always conscious of it.
Question: Traveling for Surgery
Journal posted on January 1, 2016
Being a planner by nature, I am trying to figure out my best option. The hospitals here are not ranked for heart surgery. Frankly, I don't think they are ranked for anything. I could travel to Houston which has 2 hospitals with good rankings for cardiac surgery. It would be a 4 hour trip. That would mean my husband would not be with me. I would have no visitors or help apart from hospital staff. After being released from the hospital my surgeon would be 4 hours away and I would have a 4 hour ride to get home.
If I stay here, I would be at a hospital that has no ranking, but my husband would be there and my surgeon would be close.
What do you think is the better choice? I will have to decide where I want to start interviewing surgeons soon.
W. Carter I think ranking Cardiothoracic surgeon's is over rated. All heart surgeons train for about 12 years, ... Read more
W. Carter I think ranking Cardiothoracic surgeon's is over rated. All heart surgeons train for about 12 years, so all of them can fix an aneurysm or replace a valve. The hospital conditions and his supporting doctors and nurses are really more important.
They say Baylor Heart Hospital is a good one. It is in Plano, Tx.
Jean Raber Hi, Anna, I'm not just a planner but an out-and-out bona fide control freak. I understand your anxiet ... Read more
Jean Raber Hi, Anna, I'm not just a planner but an out-and-out bona fide control freak. I understand your anxiety, but sometimes word of mouth about local facilities can give you good info.
I felt very comfortable about my regional hospital after talking to some local folks who had valve repair/replacement there.
Also, how important is it to you to have family/friends visit you? (I asked my family and friends to stay away during my last surgery because I was going home to a six-year-old, and I wanted to get as much rest as possible. For OHS, I'd want Raber on hand with my advance directive in the event of certain outcomes.)
Another consideration is cost. If you're on an HMO that won't pay for you to go to a top-rated hospital, you're looking at a bill of tens or hundreds of thousands of dollars. Plus, if you want your husband there, he will have to stay at a hotel, have meals out, etc. That can add up if you're on a budget. Some folks on here have said that the top-rated hospitals sometimes have a special deal with area hotels for family, so you could check into that.
Ratings like U.S. News and World Report's list of top hospitals generate a lot of buzz, but doctors say no single ranking of a hospital will tell patients everything they need to know.
Kenny Knox I live in Columbus and my docs are in Cleveland. I think the 2.5 hour commute is worth it.
Liz Burroughs I had my surgery at a hospital (UVA Medical Center) that was a little over 2 hours away from my home. ... Read more
Liz Burroughs I had my surgery at a hospital (UVA Medical Center) that was a little over 2 hours away from my home. I went with the surgeon that my cardiologist recommended as the best surgeon in the area with the most expertise to perform my mini mitral valve repair. My husband stayed at a hotel for the week that I was in the hospital. I was discharged from the hospital on a Friday. We stayed at the hotel that night and drove home on Saturday. I think I made the right decision and I feel like it was worth the extra expenses. I know that having surgery away from your local area isn't right or practical for everyone. Good luck with your decision!
Anna Jones Thank you. If I choose to go to Houston I would be by myself from the time I left home until the tim ... Read more
Anna Jones Thank you. If I choose to go to Houston I would be by myself from the time I left home until the time I returned home. I'm not sure if that is a good idea.
Hi Anna, I was positive I was going to go with Cleveland Clinic as they are used to commuters for the ... Read more
Hi Anna, I was positive I was going to go with Cleveland Clinic as they are used to commuters for their surgeries, but it wasn't practical and I stayed in the Dallas area for my surgery. I was pleasantly surprised with the quality of the hospital I went to. Many will let you tour the facility ahead of time. Ultimately, you could meet with local surgeons, but make sure they are doing the surgery that fits with you and make sure your hospital has a good nurse to patient ratio. We used to live in Savannah, GA and nobody there was really doing minimally invasive surgeries and honestly, the facilities were not all that updated. If I were still there, I would have gone to Atlanta (4 hours away) to a hospital that offered that type of surgery. I am not sure exactly where you are, but I had surgery at the Baylor Heart Hospital at Plano (just outside of Dallas) and I could not have been more pleased.The facility is state of the art, the nursing and other staff were incredible and my surgeon was great. Also, I spent all nights alone in the hospital and my husband came for a few hours each day. That was nice, but in my experience in Plano, the nursing staff were so good that they were able to help me with everything I needed. Each hospital is different, but I didn't need extra support the same way I thought I would. Good luck with your decision and I hope you are able to find options that you are comfortable with!
Tina Maroon I vote Cleveland Clinic. I thought it was the best choice for Heart Surgery. That is where I had my s ... Read more
Tina Maroon I vote Cleveland Clinic. I thought it was the best choice for Heart Surgery. That is where I had my surgery. I had a terrific outcome!!
Sophia Ridley It's a tough choice to make. Even if I didn't live in London, I would have gone to the same hospital. ... Read more
Sophia Ridley It's a tough choice to make. Even if I didn't live in London, I would have gone to the same hospital.
We had childcare issues so my husband wasn't there when I went to OR (nurses were jovial and it was busy) or, due to visiting times, when I woke in Recovery. He didn't have any leave so when he could he worked from my room, even having conference calls. I didn't mind as I would drift in/ out of sleep and the chatter broke the silence. The nurses were not restricted by this and when he was free we would talk or attempt a walk. Having visitors is very tiring and I was glad that there was a distraction for him!!!
If his work is the restriction, is there a way around it like we found ?
Anna Jones Hi Sophia. If I go to the hospital here he can visit any time that he wan'ts as there won't be a tra ... Read more
Anna Jones Hi Sophia. If I go to the hospital here he can visit any time that he wan'ts as there won't be a travel-restriction. If I go to Houston, it would mean an 8-hour round trip for him. His health isn't good and that 8 hours of driving time would mean he would have little to no time to spend with me at the hospital. He would not be able to spend the week in a hotel if I choose to go to Houston.
Anna Jones Thank you, everyone for your insights. I'm still wrestling with what to do. I will see if it is pos ... Read more
Anna Jones Thank you, everyone for your insights. I'm still wrestling with what to do. I will see if it is possible to tour the hospital.
Wanda Mroz There are great docs in every health system. My cardiologist suggested my surgeon and referred me. ... Read more
Wanda Mroz There are great docs in every health system. My cardiologist suggested my surgeon and referred me. I looked his rating up and decided he was the one. He was awesome and the hospital staff was wonderful. I was less than a half hour away from home. I would not have wanted to be so far. But you have to trust your gut and sixth sense. I did and don't regret it.
My husband is diabetic so I've had lots of experience being his medical advocate. It is giving me the knowledge to do the same thing for myself. I called the Cardiologist's office to find out what the delay is in scheduling my cardiac MRI. The nurse told me that we were waiting on the proper paperwork to be completed. I asked to speak to the person who files the paperwork and was assured it would be taken care of. Then I waited 7 more days. I called the hospital where the cMRI is to be scheduled, waited on hold for 10 minutes, and was told that the physicians orders were filed but that we were still awaiting the insurance authorization. I called the insurance company. I was told no paperwork had been submitted. I called the Cardiologist's office and spoke to the "paperwork person". She said she would file the paperwork. I called the hospital and waited on hold 30 minutes. I asked them to also speak to the "paperwork person". I waited 2 more days. I called the "paper work person" she said she had the authorization number but couldn't find it. I called the insurance company. They gave me the number. I called the hospital, waited on hold for 10 minutes, and gave them the authorization number. Tah Dah I now have a cMRI date of January 7. Do you think I can send a bill to the Cardiologist for my time?
Liz Burroughs Good for you!! We all have to be our own health advocate. Otherwise, if we wait for things to just ha ... Read more
Liz Burroughs Good for you!! We all have to be our own health advocate. Otherwise, if we wait for things to just happen, we'll be waiting a long time. Sometimes people lose things, they forget, and they're not that concerned about delays. I'm glad that you didn't give up & you achieved your goal! Good luck!!
Emily Rowley Oh my gosh, they treated you poorly. You go girl for taking action & being strong-willed health advoc ... Read more
Emily Rowley Oh my gosh, they treated you poorly. You go girl for taking action & being strong-willed health advocate for yourself! It's annoying all those places put us on hold for so long and slow they take to get back or when they don't so we need to chase them, they give excuses...
Wow, can I call you when I need to get things done? Way to self advocate!!
Sophia Ridley It's a pain that we need to go through this considering that we have enough to be thinking about :( g ... Read more
Sophia Ridley It's a pain that we need to go through this considering that we have enough to be thinking about :( good it's sorted.
Maybe it's a result of my day job but I've got to the point now that I follow up on everything, and also check medication for interactions as I want to know what I'm taking. I'll research and am not shy in questioning what they are doing and why, as I have an underactive thyroid which is sometimes overlooked. My advice is to be vigilant especially if you have other conditions.
Emily Rowley That's great Soph, in Hospital I ask what medication they are trying to give me, what's it for, what ... Read more
Emily Rowley That's great Soph, in Hospital I ask what medication they are trying to give me, what's it for, what side effects, why do I need it (do I really need it!) etc. All throughout this recent journey I have been keeping my paperwork in a marked display folder 📁 write all questions and important information down in a book 📚 Lucky I spoke up to my Surgeon about my previous Kidney failure & problems, she was surprised and that needs to be taken into consideration. I know what you mean cause other organs can affect your heart especially when dealing with mixing medications! O.O
Sophia Ridley Emily - you're super organised ! I'm sorry to hear about your kidney issues, you've been through a lo ... Read more
Sophia Ridley Emily - you're super organised ! I'm sorry to hear about your kidney issues, you've been through a lot in your 21 years. As they say, makes us stronger...
I have kidney history, nothing as serious as yours and I really hope it doesn't happen to you, but when my catheter was removed I gained pyelonephritis within minutes. Hurt 100x more than the heart op and knocked me for 6. I don't know if your surgeon can preempt this, thought best to warn you. They had to then balance the antibiotics vs beta blockers but did get much better within a day of starting the course.
Gerald Schaffer It's frustrating having to go through all that but good for you for pushing things to get them done.
Update posted on...
December 28, 2015
If I decide I want to see a mental health practitioner (i.e. psychiatrist, psychologist, therapist) before and after surgery to help with the anxiety, mood swings, depression, whatever.... what type of mental health specialty would I look for? Is there a special kind of therapist that works with people having surgery?
pino correale Hi Anna, it's so coincidental that you bring this up and by the way thanks for that, because with yo ... Read more
pino correale Hi Anna, it's so coincidental that you bring this up and by the way thanks for that, because with your comment you might be opening the doors for other heart brothers&sisters to perhaps open up and do talk about their various experiences. For instance i am 5weeks post-op and the first three were simply hellish because i couldn't sleep a wink. So in complete honesty i think that my anxiety level got the best of me and i had to resort to some medication to address my problem. However my recovery on the physical part has been wonderful. Hope this helps........good luck
Hi Anna, sorry in advance for this long post. I am a psychologist and just had AVR via mini sternotom ... Read more
Hi Anna, sorry in advance for this long post. I am a psychologist and just had AVR via mini sternotomy about 4 weeks ago. I have had to do a lot of processing and management of my own anxiety. I was petrified about this surgery; especially because I have two children. A psychiatrist will likely prescribe medication, but most don't do traditional therapy. Medication may help depending on the issue, but manages symptoms and doesn't necessarily teach a person the skills to manage anxiety or depression. There is some literature that a combination of medication and therapy work best, but usually with more severe cases of depression/anxiety. A psychologist or other doctoral prepared therapist usually has more extensive formal training in different types of therapy modalities. Doctoral trained psychologists must complete supervised predoctoral internships (1 year) and a usually an additional year of postdoc prior to becoming licensed. Therapists have similar standards. A therapist who is master's prepared has less formal training usually, but is also trained in different types of therapies and to be licensed has to complete a certain number of hours under supervision. Also, many people with religious affiliation like to work with chaplains or someone in their church. Ultimately, you would need to find a provider who works best for you and your needs. I would look for someone who has significant experience in anxiety/depression (and if you can find it someone who has worked in a medical setting) and ideally someone who can refer the therapist/psychologist/psychiatrist There is a lot of literature that supports cognitive behavioral treatment, which looks at how one thinks, feels, and behaves and provides strategies to help challenge the thought process and create more adaptive coping strategies. Can't say that would work for you, but there is extensive research on it. As Pino said, this is great that you are bringing this to light; it is so important! This website is invaluable at normalizing this unique experience. Please feel free to email me if I can help you find more resources. LMM_uk@yahoo.com
Best wishes to you.
Anna Jones Laura, Oh my gosh!!! Thank you so very much for your response. I will search for a cognitive therap ... Read more
Anna Jones Laura, Oh my gosh!!! Thank you so very much for your response. I will search for a cognitive therapist who focuses on anxiety/depression and hopefully PTSD. I will ask if they have worked in a medical setting. Maybe there will be someone who fits all of these needs. I will also ask my primary care physician and cardiologist if they know of someone. I will also ask at the hospital once I find out which hospital.
Thank you so much for your email address. I may take you up on your offer to find more resources if I make no progress on my own.
Congratulations on getting through your AVR. Sending best wishes for an easy recovery.
I really need to give them both the URL to this site as neither doctor mentioned it.
pino correale Hi Laura, i just wanted to thank you for your wonderful commentary. I am certain this will help a lot ... Read more
pino correale Hi Laura, i just wanted to thank you for your wonderful commentary. I am certain this will help a lot, simply because as we all know, we are all very shy and apprehensive in approaching the touchy subject of mental health. I may add nobody better than you can evaluate and stress on it's importance as you just did. Wishing you a speedy recovery and a Happy New Year.
Thanks Anna and Pino! I appreciate your post and your responses in so many ways. I have been saying a ... Read more
Thanks Anna and Pino! I appreciate your post and your responses in so many ways. I have been saying all along that these types of surgeries are traumatic and scary. I think our surgeon/cardiology offices would benefit from integrated health care where they are assessing and treating both medical and behavioral health needs (as they can be so closely related). I work with PTSD and trauma and to have me being the one experiencing the symptoms was a table turner. This was such a scary surgery to me, especially as this runs in my family and I had personal trauma related to it. It stirred up a lot of "stuff" for me. Best wishes to you both and we will all get through this together!
Meredith Bray I'm a heart patient and also a beginning psychology student. I had an interesting conversation with m ... Read more
Meredith Bray I'm a heart patient and also a beginning psychology student. I had an interesting conversation with my cardiologist last month about pre- and post-surgical counseling. He refers his patients to a counseling center that only works with surgical patients. Maybe your doctor or surgeon can refer you to someone?
Anna Jones Thank you Meredith, I will ask my doctors.
Wanda Mroz Great questions... Very happy you got some answers to work with.
Kimberly Biddick Wonderful advice Laura!! I can also chime in and say I have been on the patient side before with Cog ... Read more
Kimberly Biddick Wonderful advice Laura!! I can also chime in and say I have been on the patient side before with Cognitive Behavioral Therapy. I had SEVERE postpartum OCD and anxiety, so bad that I could not function at all, and CBT worked wonders for me. I will be forever grateful for that! It took some time to find a therapist that I was comfortable with, and I had to combine with medication, but the tools I learned 5 years ago were also things that I was able to use and apply before heart surgery. I cannot say enough good things about it!!!!!!!
Lilly Black Anna, try a surgery coach. I actually bought Peggy Huddleston's book but also hired a surgery coach w ... Read more
Lilly Black Anna, try a surgery coach. I actually bought Peggy Huddleston's book but also hired a surgery coach who had recommended the book. From it, I learned to visualize, relax, and meditate. It helped me tremendously for my first (2007) and second (2014)heart surgery. My second surgery was easier because I knew what to expect. Here is the link: http://www.healfaster.com/workshop.html
I don't believe you need a psychologist. It's all about acceptance, relaxation, and visualization. It worked for me! Good luck! Or as an alternative, you may also want to get Adam Pick's book.....it helped so many people on this site. :o)
Prepare for Surgery, Heal Faster - A Guide to Mind-Body Techniques
Wanda Mroz Wow this looks great Lilly... I could have used that.
Sophia Ridley I did extensive research prior to surgery and was warned about cardiac depression so I decided to pre ... Read more
Sophia Ridley I did extensive research prior to surgery and was warned about cardiac depression so I decided to prepare for this. Visiting a cardiac psychologist and a hypnotherapist are extremely beneficial, I have seen both from 4wks pre-surgery. My husband visits the psychologist with me which helps him express his concerns too, she also came to see me in hospital when I returned to my room which was a God send. Hypnotherapy using CBT has helped me articulate my concerns and put it into perspective.
I urge all heart surgery patients to engage these professionals.
The natural concern will still be there but with this addition support it prevents it from manifesting.
I also received the Sacrament of the Sick from the church prior to surgery so I covered all bases!!!
pino correale Partecipating to this blog has been so far a revealing and educational experience .By the sounds of i ... Read more
pino correale Partecipating to this blog has been so far a revealing and educational experience .By the sounds of it, correct me if i am wrong, we are all breaking the ice and coming together in total honesty and dignity. As we all know mental health was always connected to the physical body. The Latins use to say ""Men sana in corpore sano"" Sound Mind-Sound Body.......
So in effect our efforts should be directed in helping de-stigmatize the old mentality and way of thinking around mental health issues, after all there are excellent treatments nowadays , so there is a lot to be thankful for.
Wanda Mroz I was told of cardiac depression also but I didn't seem to be affected by it. Different people react ... Read more
Wanda Mroz I was told of cardiac depression also but I didn't seem to be affected by it. Different people react different ways.
Wanda Mroz Glad there is all this help! I was more affected by anxiety and worry... That's normal for me... The ... Read more
Wanda Mroz Glad there is all this help! I was more affected by anxiety and worry... That's normal for me... The worry wart.
Anna Jones Wanda, I am a worrier too. I am pretty sure I have the Mitral Valve Prolapse Syndrome (that I read ... Read more
Anna Jones Wanda, I am a worrier too. I am pretty sure I have the Mitral Valve Prolapse Syndrome (that I read about here: http://www.mitralvalveprolapse.com/) My husband says if I wasn't worried about something I would be worried that I wasn't worried :)
In 2006 when I got out of the hospital I was very depressed. It lasted a couple of months and then slowly got better on its own.
The Society for MVP Syndrome is a nonprofit,charitable organization. Co-founders Jim, Cheryl and Bonnie Durante. Were dedicated to educating and support patients with mitral valve prolapse syndrome. Link to Cheryls and Jims story. The Dream TEam of MVPS/D DVD
Wanda Mroz I hear that is common. There were times I thought things were moving too slow and got a little down, ... Read more
Wanda Mroz I hear that is common. There were times I thought things were moving too slow and got a little down, but no serious depression... just the worry. I still worry!!!
Question About Diet and Aspirin
Journal posted on December 24, 2015
Hi Everyone,
I called my cardiologist to find out what is delaying scheduling my cardiac MRI. We are still waiting for approval from the insurance company. I wasn't happy to hear this. After Christmas I will call the insurance company to see if I can help get things moving.
Meanwhile, I have been reading a lot of journals and posts. Thanks to everyone for all the wonderful information you are sharing.
So the questions I have: Does everyone need to be on a blood thinner? I am a vegetarian. That means most of my diet is vegetables and salads, nuts and seeds. Is this going to present a problem?
Second question: I'm allergic to aspirin and NSAIDs. Is everyone on aspirin after surgery?
Wanda Mroz I can't speak for everyone but I am on a low dose aspirin, yes. I was also on Coumadin for 3 months. ... Read more
Wanda Mroz I can't speak for everyone but I am on a low dose aspirin, yes. I was also on Coumadin for 3 months. When you are on that you have to watch your vitamin k intake... Mostly leafy greens have a lot. I still ate salad everyday though. They work with you but you may still need to avoid spinach, kale... Things like that if you are on blood thinners. I wish you well... Hope your insurance gets things moving for you! Happy holidays to you and yours. Any questions just ask... Lots of first hand knowledge on this site!
W. Carter Iceberg salad does not effect your inr readings. Spinach and other leafy type salads do. If you are a ... Read more
W. Carter Iceberg salad does not effect your inr readings. Spinach and other leafy type salads do. If you are a vegetarian I would suggest a tissue valve. I would imagine that your surgeon will recommend the same with you being a vegetarian. About a fourth of the vegetables that you eat are high in vitamin k and vitamin k is the antidote for Warfarin. In other words you can lose all of the anticoagulation effects by consuming too much vitamin k. Warfarin is more suited to people that eat a well rounded diet of meats and veggies.
Meredith Bray My nurse told me (so this is second hand to you, of course you'll do your own research and asking) th ... Read more
Meredith Bray My nurse told me (so this is second hand to you, of course you'll do your own research and asking) that if i wanted a spinach salad (raw, not cooked) that a glass of wine could balance out the vitamin k. So I still eat spinach, broccoli, brussels sprouts, etc.
Clare Auten I also think that they can adjust the blood thinner for a higher vitamin k diet. My clinic just like ... Read more
Clare Auten I also think that they can adjust the blood thinner for a higher vitamin k diet. My clinic just likes me to be consistent.
Wanda Mroz That's true Clare... They want you to be consistent in what you eat. That keeps your levels even. ... Read more
Wanda Mroz That's true Clare... They want you to be consistent in what you eat. That keeps your levels even. I eat a salad of romaine everyday so as long as as I didn't deviate too much from the norm it was ok. When you do eat something with more k in it a small portion shouldn't hurt too badly. I would eat broccoli now and then but only a little.
W. Carter You are playing with fire when you double the dose everyday to consume more vitamin k. Say you are si ... Read more
W. Carter You are playing with fire when you double the dose everyday to consume more vitamin k. Say you are sick for 4 days and can't eat, your inr might shoot to 5.0 or higher. Then you are at high risk for bleeding. Vegetarians like to consume a lot of vitamin k veggies daily. They are great for fighting cancer. I joked with my pro time doctor, I will probably die from cancer. :-)
Consistency means if you eat 3 (not 23) portions of high vitamin k enriched vegetables a week do so every week so your dosing will remain the same.
Jim Kelly-Evans Consistency is the key. I am a vegetarian. When I was on an anti-coagulant (Warfarin) I ate salads, s ... Read more
Jim Kelly-Evans Consistency is the key. I am a vegetarian. When I was on an anti-coagulant (Warfarin) I ate salads, spinach, anything i wanted, but each and every day so that my vitamin K intake remained relatively constant. I had no problem at all staying in range with 8 mg of Warfarin daily. People who tell you that you can't eat this or that simply do not understand anti-coagulation therapy.
Thanks Jim. I was hoping there was a vegetarian on this site.
Phyllis Petersen I know you posted this awhile back and may have discussed this with doctors already. I have an issue ... Read more
Phyllis Petersen I know you posted this awhile back and may have discussed this with doctors already. I have an issue with regular NSAIDs too: I get internal bleeding in multiple places. After my knee replacement I took Xarelto with out much problem, but only for a short period of time. I'm having repair, unless of course anything goes wrong. Just make sure that your doctors understand that it isn't just a stomach problem, so they can adjust accordingly.
Life is strange. Fifteen years ago my husband died of V-fib. In the midst of my grief I remember talking to a woman who told me that she had had mitral valve replacement with a bioprosthetic valve and that it was the worst experience of her life. I'm not sure why I remember this conversation.
In 2006 I went to a cardiologist with extreme chest pain. He did an EKG and told me I was having a heart attack. An ambulance drove me from the cardiologist's office to the hospital where I given nitroglycerin, had several EKG, echo, echo stress test, and CT. After 2 days I was released from the hospital with a diagnosis of stress.
In 2013 I was in an automobile accident and sent to the hospital. I was told I had a heart murmur and to see a cardiologist. I saw a cardiologist who sent me for a cardiac MRI. I was told I had mild to moderate regurgitation. Every year since then I have had an annual echo but this year the diagnosis was severe regurgitation.
I am waiting for the cardiologist to schedule a cardiac MRI. She has told me that she expects she will be referring me to a surgeon.
Currently I am trying to do as much research as I can based upon the little information I have at this moment. The conversation I had with that woman 15 years ago has me worried.
Kimberly Biddick I am so sorry to hear about your husband. Did he also have heart issues?
Kimberly Biddick I am so sorry to hear about your husband. Did he also have heart issues?
I would like to welcome you and let you know that I just had open heart surgery, via a full sternotomy, 6 weeks ago. It was NOT the worst experience of my life. In fact, I would have to say having a forceps delivery with my second son and having 35+ stitches as a result was much more traumatic. Plus, medicine has come a far way in 15 years!! Educate yourself, learn as much as you can and read the journals here. It's all very helpful in making something as scary as open heart surgery much more bearable. Hang in there!!!
Billy G Hi Anna, I can see how a story like that can create additional fear when you are now facing a similar ... Read more
Billy G Hi Anna, I can see how a story like that can create additional fear when you are now facing a similar surgery. There are many things I could share, but one of the most helpful might be how much modern medicine has improved this type of surgery over even just the last few years.
I started researching heart valve surgery in August and had open heart surgery to repair my aortic valve 5 weeks ago. One story I came across was from a person that had heart valve surgery 6 years ago and was now facing a second surgery. The person was inquiring about how different a second surgery 6 years later would be, and a person from the medical field replied saying that he would notice improvements in the surgery and medical care that had been made within just the 6 past years.
If you do find you are facing surgery, try to be as positive as possible. It may not be easy, and there will be difficult moments, but remember that medicine has had many advances within the past 15 years and hundreds of thousands of people have similar surgeries worldwide every year. There are some people that prefer to not know what they are facing, but for me, learning as much as possible about what I was facing helped me get through everything.
Wanda Mroz I had mitral valve repair four and a half months ago via sternotomy. I also had a tricuspid repair a ... Read more
Wanda Mroz I had mitral valve repair four and a half months ago via sternotomy. I also had a tricuspid repair and maze procedure. It was not the easiest thing, but definitely doable. And not nearly as painful as a total shoulder replacement 3 years ago! Heart procedures evolve quickly and the advances are amazing. 15 years ago is a long time! Thirst surgeries have a high success rate and there are many fine physicians. I can't complain about the care I received... All positive. You can learn a lot from this site and everyone here has been through it. Just ask and we will help you through it.
Sophia Ridley Hi Anna, welcome to this wonderful site! I had my mitral valve repair 5wks ago. I'm so glad I had it, ... Read more
Sophia Ridley Hi Anna, welcome to this wonderful site! I had my mitral valve repair 5wks ago. I'm so glad I had it, not having it was not an option.
Heart surgery is at the forefront of modern medicine. The techniques used 15 years ago will have been modified beyond recognition. For example... I have had two kidney ops - 20yrs ago open surgery 10" flank "shark bite" scar, recovery far worse than OHS; 13yrs ago by keyhole and I have an inch scar and 2wk recovery! At that rate, now they probably just sprinkle fairy dust... I'm not planning to find out !!!! :o)
When I found out I needed heart surgery I knew no one who had had it and felt naturally scared. My first experiences was to be told by a nun that it was very depressing. I started researching turning the whole thing into a project, found this site and talked to everyone I knew (and a host of professionals) to educate myself. I promise you will learn fantastic life changing stories to draw strength from. I decided to take what the nun said and act positively in prepare myself for the surgery by engaging with a cardiac psychologist. Yes, good days and bad days are part of recovery but speaking with her pre surgery, during my hospital stay and in recovery has made my feelings about my AF (not expected) more bearable. She has supported too my husband. In many ways I'm thankful for what this nun said as it spurred me to react positively in a direction that I would not have considered.
We're here for you.
Anna Jones Thank you, everyone. I am so very glad I found this site. I appreciate all offers of emotional supp ... Read more
Anna Jones Thank you, everyone. I am so very glad I found this site. I appreciate all offers of emotional support and will be asking questions as I get more information. Right now I am waiting for insurance authorization for the cardiac MRI and then I will see my cardiologist again and get better answers. When I heard I needed surgery I think I went into fear mode and left without asking anything... and that isn't like me.
Anna Jones Kimberly, my late husband had high cholesterol and was on Lipitor. At the time I asked is primary c ... Read more
Anna Jones Kimberly, my late husband had high cholesterol and was on Lipitor. At the time I asked is primary care physician to check for atherosclerosis. His doctor said that he didn't fit the profile and there was no reason to do anything more than prescribe the Lipitor. He went into V-fib 1 month later and the death certificate states his death was due to atherosclerosis.
Steven A Husted i agree with the posts above knowlege is a good thing and there is plenty of it here and in adams boo ... Read more
Steven A Husted i agree with the posts above knowlege is a good thing and there is plenty of it here and in adams book
Thank you for sharing.