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.
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 of funky- my body didn’t quite feel like mine and nuses ... Read more
Anna Jones  Thank you. I was a little worried.
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. ... 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.
Marie Myers  If it is any consolation, no one mentioned a dental clearance for me either.But I did it anyway.
Anna Jones  Thank you, Marie
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, ... 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 ... 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 ... 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 ... Read more
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, incomplete information. I cry once in awhile when facing the what-if's ... 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 ... 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 ... 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 ... 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. ... Read more
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 similar reaction after scheduling my surgery and was caught ... 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 ... 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 ... 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, 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 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 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 full steam ahead. Two days from now I will have a new valve ... Read more
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.

Kelly Stoll  Drive safe and may you get the answers you need.
Bonnie Stone-Hope  Best of luck for your appointment this week. Hope you get all your questions answered. Drive safe.
Anna Jones  Thank you.
My General Practitioner
Journal posted on March 5, 2018
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 I called the surgeon and made an appointment for a consult. ... 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 ones who will be there for you in the months/years after surgery ... Read more
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 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 info on morbidity, valve types and their pros and cons and ... Read more
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. ... 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 speaking with my cardiologist again, I left him a message on the ... 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 ... 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 ... Read more
Anna Jones  Isn't that the truth of it, Helen Daw!
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 ... Read more
Rose Madura  I met him one time prior to surgery.
Anna Jones  Thanks, everyone.

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. ... 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. I believed that I did based on how I am feeling, my pulse, ... 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 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 together so that is reassuring. My cardiologist is doing ... Read more
Gerald Poulton  I suggest a new cardiologist asap
Local Surgeon and my questions for this group
Journal posted on February 27, 2018
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 heart valve surgery given thatyour surgery might be some ... 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 ... 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 ... 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.
Phyllis Petersen  That's the one! Who was your surgeon Bill?
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: ... 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 ... 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 ... 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 three months now and I’m feeling good and playing basketball again on Fridays.
Phyllis Petersen  Fantastic Bill!
Very Disappointed in Dr. Accola
Journal posted on February 27, 2018
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 rely on an interaction with an admin from his office to ... 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 ... 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 ... 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 ... 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 ... Read more
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 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 have a another incident while I was back home, and I just ... Read more
Anna Jones  Thank you, Shannon
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 ... Read more
Anna Jones  Thank you Lilly
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 to CC for follow-up and again when one of my incisions ... Read more
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.

If my nerves don't kill me.... nothing will.
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. 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 they were in the process to switch insurance companies. When ... 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 am very glad your boss is among them. Best wishes for ... 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 amazing reputation at the hospital. People would come ... 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 10. I told the nurse on the way in how nervous I was and ... 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. ... 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 ... Read more
Anna Jones  Thank you
Digital Voice Recorder
Journal posted on February 17, 2018
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.

If you bought one, what brand/kind did you buy?
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 ... 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 called to see if I had any questions not answered by the surgeon. ... Read more
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 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 referral if you can meet them all meet them. If You don't ... 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 ... 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 ... Read more
Anna Jones  Thank you.
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.
Anna Jones  Thank you Bob Fessler.
An update and maybe the start
Journal posted on February 1, 2018
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 are clear.
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 ... 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 ... 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. ... Read more
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.

I wish I could cry.
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 ... 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 ... 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, 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. He acknowledges my symptoms. My left atrium is enlarged. ... 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 MV Repair- it is a beautiful state of the art hospital just ... 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! Loved the dr and surgeons. I felt I received great care. ... Read more
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 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 prolapse and severe regurgitation, my family physician referred ... 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 ... 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, ... 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 ... Read more
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 having those symptoms. I was easily out of breath, woke up short ... 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 ... 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 ... Read more
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  So glad that it went well and is over with!
Hope you are feeling well after the procedure. Keep me posted!
Anna Jones  Thank you, Therese. How are you doing?
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 ... Read more
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.
Michael Zernell  I would like to know that too
Civita Fahey  I didn’t have much of an appetite for the first few weeks. I craved fish tho for some reason. But after that pretty much normal eating
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 a lot of stress so start slow. Soup is good but I had to ... 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 ... 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 ... 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.
Civita Fahey  I still cant drink coffee!
Gerald Poulton  Wow Civita, that's life changing 😀
Question for Women
Journal posted on January 18, 2018
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 to shave "down there" so they can shave and make sure the ... 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 ... 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 ... 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 ... 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 ... 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.
Rita Savelis  Laughing is good!
Phyllis Petersen  It's what gets me through the day!
Valve Types
Journal posted on January 3, 2018
Is there a difference between human-donated and porcine or bovine valves?

I am reading that the bovine lasts longer than the porcine. Does the human-donated valve last just as long as either the porcine or the bovine valves?

How difficult is it to get a human-donated valve?
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 ... Read more
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!

This is a season of miracles.

Rose Madura  Wow!
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 ... Read more
Debra Langford  Great save! I’ll bet the kids were happy you helped out.
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 sleep feature but I think the heart rate measurements are ... 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! 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 enjoyed the step counter, sleep function and app but it kept ... 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 were off by 20 beats or more. but to know how much you have ... Read more
Anna Jones  Thank you, everyone
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 ... 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 ... 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. ... 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.

Wishing everyone a happy Thanksgiving.

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 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 January and can cancel the surgery. I agree with Lilly, ... 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 his issue. Take care of you, too.
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 administrative area where valuables such as a suitcase can ... 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 ... 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 ... 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 ... Read more
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 surgery I took my purse and carry on bag (including my eyeglasses) ... 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 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 was a very detailed process, almost annoying, but they were ... Read more
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 the cath.
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 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 look at your echo before going? The last thing either of ... 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 ... Read more
Phyllis Petersen  Hopefully, you can both get some answers soon.
Taking Deep Breaths
Journal posted on October 10, 2017
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 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 your plate and worry and fear only compounds and makes ... Read more
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 be to work on stress reduction for both or you. We had ... 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................... ... Read more
Marie Myers  It is hard being human...
Traveling out of state for surgery
Journal posted on October 4, 2017
Hi Everyone,

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.
Anna Jones  Oh, great idea, Steve. Thank you.
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 ... 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 would be with me. Since there probably won't be, she said ... Read more
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 went to Brigham (the patient room is set up to accommodate ... Read more
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 the Cleveland Clinic was in our network. I then sent my ... 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, ... 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 ... 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 ... 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.
Rough 2 weeks
Journal posted on October 23, 2016
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 for sure
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 ... Read more
Anna Jones  Thank you, Ellen and Rita. I very much appreciate your thoughts.
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.
Anna Jones  Thank you very much.
Ellen Leng  Wow, tough news! Take one step at a time, and thank the Cardiologist for not waiting with the news. Sending good vibes...
Craig Gay  Hugs and prayers to you both!
Shannon Sullivan  Anna, prayers for calm for you and your family
Anna Jones  Thank you very much.
Roseline Rosario  Prayers your way
Corey Sines  Sending good vibes and prayers..
Anna Jones  Thank you, everyone.
Meredith Bray  I did a lot of pretending. I think it's a normal coping mechanism.
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 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.

It is like the Sword of Damocles.

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 ... Read more
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 care. I needed to change cardiologists earlier this year ... 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 ... Read more
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 you have not started already. If you're worried about that, ... Read more
Did you know that weight training for osteoporosis -- not just walking or doing aerobics, but lifting weights -- can help protect your bones and prevent osteoporosis-related fractures? Here's how to get started on weight training.
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.
Mark Caswell  Great news....for now :)
Anna Jones  Thank you, Mark
W. Carter  Lucky you!
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 surgery and when I had my cath they said my valve function ... 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 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 favorite restaurant is Seasons 52 and I've been begging my husband ... 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 ... 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.
Sophia Ridley  Maybe he's planning something??
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 used is Cardiac Surgery Specialists. Dr. William Brinkman ... 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 ... 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 invasive." There is one surgeon in the practice Laura mentioned ... Read more
Anna Jones  I'm in Austin, TX
Health is falling apart!
Journal posted on January 4, 2016
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 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 things were falling apart right before my surgery. So much ... 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.
Jeff Oswald  Sending prayers for you
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 ... 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. ... 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!!
Anna Jones  Thank you.
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 ... Read more
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, so all of them can fix an aneurysm or replace a valve. ... 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 ... Read more
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. I went with the surgeon that my cardiologist recommended ... 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 their surgeries, but it wasn't practical and I stayed in the ... 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.

We had childcare issues so my husband wasn't there when ... 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 ... 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.
Sophia Ridley  Sorry to hear your restrictions.
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 ... Read more
Here's my newest picture!
December 31, 2015   Like
Anna Jones  Our Springer likes to be comfortable
W. Carter  Spoiled Rotten! :-)
Liz Burroughs  Cute picture!!
Being My Own Medical Advocate
Journal posted on December 30, 2015
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 happen, we'll be waiting a long time. Sometimes people lose ... Read more
Anna Jones  Thank you, Liz.
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 ... Read more
  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 :( good it's sorted.
Maybe it's a result of my day job but ... 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. ... 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... ... Read more
Anna Jones  Laura, call me any time :-)
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 your comment you might be opening the doors for other heart ... 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 ... 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. ... 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 ... 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 ... 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 ... Read more
Anna Jones  Thank you Meredith, I will ask my doctors.
Wanda Mroz  Great questions... Very happy you got some answers to work with.
Anna Jones  Thank you, Wanda
Anna Jones  Thank you Pino
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 ... 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, ... Read more
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 prepare for this. Visiting a cardiac psychologist and a hypnotherapist ... 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 ... Read more
Anna Jones  Thank you, Lily and Sophia, Pino
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 worry wart.
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 ... Read more
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, 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. When you are on that you have to watch your vitamin k ... 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 ... Read more
Anna Jones  Thank you. That was my concern.

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 ... 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. I eat a salad of romaine everyday so as long as as I didn't ... 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 ... 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 ... Read more
Anna Jones  Thank you everyone.

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 with regular NSAIDs too: I get internal bleeding in multiple ... Read more
Update posted on...

December 24, 2015

Wishing everyone happy, healthy holidays ahead. Merry Christmas.
Journal posted on December 22, 2015
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?

I would like to welcome you and let you know that I just had open heart surgery, ... 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 ... 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 ... 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 ... 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. ... 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 ... 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