Anna Jones - Heart Valve Journal

Bobbi Alford Good luck with that, kid.

Rose Madura Anna, I think you'll find after your surgery, that you wish you didn't expend so much time worrying. We all did this so I'm not picking on you - just saying. ... Read more

Judy Shaw Anna, I don't have many symptoms but my surgeon says my heart is showing symptoms. I think it's been such a gradual change I've gotten used to symptoms I'm ... Read more

Joan Lyons That's how I felt too, but the only place from here is down with waiting and you won't be as healthy going into the surgery, or up after the surgery and rehab. ... Read more

Anna Jones Thank you.

Bobbi Alford Anna, thinking of you. Hugs.

Adam Boyadjis I will echo what Rose said. The lead up is actually harder emotionally than the recovery. Recovery is easier to handle in my opinion because you have a track ... Read more

Ivana Okereke Hi Anna I am the same, I feel good, I dont have symptoms and yet I have surgery the same day as you. My TEE came back 4+ sever, severe, and yet I feel great. ... Read more

Bonnie Stone-Hope Hello Anna, you will be fine. Thank you for all your encouragement for others (including myself!)

Chris Purvis That would drive me insane too. I’ve got to travel and I’m not booking my flights home because I really don’t know what to expect.

Anna Jones Chris, I hedged my bets and booked using a fair that allows me to change my return date.

Kelly Stoll I'm sorry Anna. That sounds very frustrating. No one should have to deal with bad customer/patient service on top of trying to travel. I hope things improve for you.

Chris Purvis Anna have you ever heard or found information on flying after? Landings can be rough and intense wondering how that could feel potentially

Rose Madura I agree that sometimes there are some healthcare workers who need to remember who the customer is! It sounds like you have it coveredd with the kind of ticket ... Read more

Catie B Knowing when to schedule a flight home is an art, rather than a science. There are a lot of variables, depending on whether you experience any complications ... Read more

Anna Jones Chris, I have read a number of people on this site saying that they had no trouble. I'll let you know when I get home how it was. The flight will be short.

Karen Warren Make sure someone is assigned a pad and pencil to right down the answers. Emotions are running high and often people hear the answers but do not remember them. Best wishes.

Willie Radl My surgeon explained most to my family but he (or his fellow) also came in each morning I was in the hospital and was able answer any of my questions. If you ... Read more

Anna Jones Thank you, Willie and Karen.

Willie Radl May also want to know if a blood transfusion was needed.

Anna Jones Oh, great question, Willie! Thank you.

Julie Copeland The dr will explain most everything. I’d ask about any complications. Ask for the long term plan. Ask for a copy of the surgical report when it’s ready. ... Read more

Anna Jones Thank you Julie. These are great questions

Bonnie Stone-Hope Hello Anna,
Just speaking from personal experience, so others may have opinions which differ from mine.

I did not use any draw string pants since did not ... Read more

Peggy Whitecotton I had stenotomy which was 7 inches. It was supposed to have been a mini (4 inches) but ended up being a full sternotomy, which is another story :).
I took a ... Read more

Barbara Wood Anna, I got by with about 2 pair of drawstring pants, I was able to fit into my regular pants about a week after I got home ( had about 6 extra lbs when I left ... Read more

Deb Lewis Completely recommend pj pants for once the catheter comes out. The feeling of knowing my bottom was covered when walking through the hospital halls gave me ... Read more

Anna Jones Thank you.

Deb I am going to go look for your slippers.

Deb Lewis That is so hard!

Phyllis Petersen Wow!

Willie Radl Anna, for what it's worth the nurses told me the soap wasn't anything all that special just an extra precaution but not necessary. I had my tests the day before ... Read more

Anna Jones Thank you , Willie. I hadn't thought of that. It is reassuring.

Julie Copeland I had a cardiac cath and other tests day prior and did fine. No special soap for me either. I did online education videos. There will be lots of nurses along ... Read more

NM Peacesine So glad you posted about the soap not being so critical. I was having anxiety about missing some spots.

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.

Like | Mark Wilbur, Alina FH likes this

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.

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!

Like | Mark Wilbur, Shannon Gray, Rose Madura likes this

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

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

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.

Like | Mark Wilbur likes this

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

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...

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.

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...

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

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.

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