Another newbie looking for guidance and support

[DocJ]

Hi everyone, I am new to the forum and am requesting your opinions/knowledge. Like many, I was born with a congenital defect (bicuspid aortic valve), and have been followed since childhood. This week, I went in for my yearly exam, thinking my doctor would be thrilled with 50 pound weight loss and low cholesterol; however, was shocked to learn that I have severe stenosis (0.7 cm) and need surgery fairly quickly. I was told I shouldn't wait more than a couple of months, but I just found out today that I may not have insurance past Sept 1st, so obviously there is more of a rush.

This has all come as quite a shock and I am still trying to process everything and make appropriate decisions. After researching and reading, I thought the only decision I needed to make was regarding the type of valve to utilize. I had come to the conclusion that I would like a tissue valve because I bruise easily and also have to have recurrent eye surgeries and did not want to risk being on the Coumadin (I just turned 48 by the way). But, when I met with the surgeon, he informed me that another option for me would be the Ross procedure. The way it was explained and what I have read about it, makes me concerned. As nervous as I already am, the more extensive surgery appears to have more risks (and evidently is controversial for BAV); I know theoretically you likely will not have to have surgery again, but what are the risks of rejection or complications?

If any of you out there could please advise me and share your experiences, tell me how you made the decision on what type of surgery to have, and disclose any complications following surgery, I would be so grateful. I apologize for the long post, butI am currently quite overwhelmed. Thank you in advance for your assistance!!

 

[Mentu]

Welcome to our community here in VR. If your valve area is 0.7 cm2, as was mine three years ago, then you need a new valve. As for selecting the type of valve, my advice, for what its worth, is to select the valve that you believe you will be most comfortable living with. As you have now discovered, each valve type comes with its own issues. I would suggest that you consider which will fit best in your life and with which you feel most secure. As for the Ross Procedure, I can only say that although some surgeons perform it, my surgeon believes that except in special instances it may leave the patient more vulnerable than would a single valve replacement. If you have any doubts, you should seek a second opinion from a surgeon unrelated to the one with whom you spoke. I'm sure that you will hear others here.

Larry

 

[Scott]

Hi DocJ and welcome. I am also in Atlanta. I was thinking about the ross as well. I ended up feeling that if something wasn't broken than don't fix it. I didn't like the idea of messing with two of my valves when I only had problems with one. I dont know if you had a second opinion yet but Doctors Chen and Guyton at Emory are fantastic. They offer both mechanical and tissue. Either way you will have great valve with a long life. When I had my visit with Guyton he had openings right away too.

Scott

 

[dick0236]

I was told I shouldn't wait more than a couple of months, but I just found out today that I may not have insurance past Sept 1st, so obviously there is more of a rush.
!!

I know little about the modern choices for valve surgery, so I'll let others comment on those issues. My advice is not to let your health insurance lapse. If you are currently covered under an employer group plan, you will have an option to continue your coverage thru COBRA or some other State program.....however, you must act, within a limited period of time, to continue your coverage. If you have a private plan, DO NOT let it lapse. Given your impending OHS, no health insurance company will cover that surgery.....if they don't have too.

Once you get past the shock of being told you need surgery, you will learn that this surgery is not a life altering procedure and you can continue to live an "almost normal" life. Good Luck!!

 

[Scott]

What Dick said is very true. You can pay to continue your insurance. Also, you will very likely need insurance for months after for visits and any issues that come up after surgery.

 

[Duffey]

Hi and welcome.
A few quick comments. I originally intended to have the Ross procedure. That was in 2004, and I would have had Dr. Paul Stelzer perform the surgery. Circumstances changed and I went with a tissue replacement. Looking back, I'm glad I did. The Ross is a procedure that is technically difficult, and with the new advancements in valve replacement surgery, I feel confident about my options if my bovine valve needs later replacement.
Regarding insurance coverage, Dick's given you good advice. You will need insurance coverage post-op.
Best wishes and please keep us up to date as you make your choices.
Mary

 

[pgammo]

DocJ,

Welcome to the forum. I posted in the forum yesterday regarding my experience. Here is the link: http://www.valvereplacement.org/forums/showthread.php?40697-Read-This-If-You-re-Waiting-On-An-AVR

I hope you are blessed by it.

Feel free to PM me if you have any questions.

 

[Lynlw]

Hi everyone, I am new to the forum and am requesting your opinions/knowledge. Like many, I was born with a congenital defect (bicuspid aortic valve), and have been followed since childhood. This week, I went in for my yearly exam, thinking my doctor would be thrilled with 50 pound weight loss and low cholesterol; however, was shocked to learn that I have severe stenosis (0.7 cm) and need surgery fairly quickly. I was told I shouldn't wait more than a couple of months, but I just found out today that I may not have insurance past Sept 1st, so obviously there is more of a rush.

This has all come as quite a shock and I am still trying to process everything and make appropriate decisions. After researching and reading, I thought the only decision I needed to make was regarding the type of valve to utilize. I had come to the conclusion that I would like a tissue valve because I bruise easily and also have to have recurrent eye surgeries and did not want to risk being on the Coumadin (I just turned 48 by the way). But, when I met with the surgeon, he informed me that another option for me would be the Ross procedure. The way it was explained and what I have read about it, makes me concerned. As nervous as I already am, the more extensive surgery appears to have more risks (and evidently is controversial for BAV); I know theoretically you likely will not have to have surgery again, but what are the risks of rejection or complications?

If any of you out there could please advise me and share your experiences, tell me how you made the decision on what type of surgery to have, and disclose any complications following surgery, I would be so grateful. I apologize for the long post, butI am currently quite overwhelmed. Thank you in advance for your assistance!!

H DocJ welcome. As you've probably figured out valve choice can be one of the toughest things during the preop period. 48 is a tough age, but many of the larger centers are reccoeemended tissue valves these days for people in their 40s and up for a few reasons. think taking needing recurrent eye surgeries into consideation, is smart. As for the Ross, when it works well it is a beautiful thing, BUT If I were inteested in it, especially with BAV, I would definately get opinions from several of the more well known Ross procedure surgerions both to see if they think you would be a candidate and IF you do choose it, the Ross procedure is definatly one of the surgeries that surgeons experience really plays a big role in. Not only doing the surgery but maybe even more importantly, being able to tell once you are open and getting a good look at your Aorta tissue and pumonary valveif you still are a good candidate. I wuld be sure to discuss your 2nd choice for what valve you'd like if it turns out you arent a good candidate.

The other thing to consider given your age, even if your new Aortic /old Pulmonary valve is doing well, you MIGHT need to have your tissue pulmonary valve replaced, altho right now in 2012 having tissue pulmonary valves replaced by cath are already FDA approved even for healthy lower risk people, and are relatively common, considerring what a small amount of Pulmonary Valve replacements done each year compared to Aortic or Mitral valves.

 

[DocJ]

Thanks so much Scott! Dr. Chen is the surgeon with whom I met. I very much liked him, but he may not have openings in the time my insurance will allow. I've heard good things about Dr. Guyton as well. I feel very much the same way about the Ross, and I think I have to listen to my gut. Although I will likely have to have surgery again, I will likely go with the tissue valve. Really, rally scared, as this all came out of left field; I was totally unprepared for the news. More scared about ICU time; I'm a bit claustrophobic and the thought of being on a vent causes great anxiety. The more I read, the more nervous I get. Everything people have written about the back and neck problems it exacerbates (I already have severe degenerative disk disease and 2 herniated disks; I know...if I were a car I would be a "lemon"), and already having chronic pain made worse by a heart surgery is scary stuff. Have you had yours yet? Thanks again. Best, Julia

 

[DocJ]

And thanks so much to everyone else who replied; I did not see the other comments. I certainly appreciate all of your help, experience, and guidance!!

 

[Jkm7]

Hi DocJ,

My surgeon knew my fear of the vent and both times, he made sure I would have no memory of it. I barely recall waking and knowing I was still on the vent but I went right back 'out' and when next I woke, it was gone. Most of us worry about the vent and few of us have any problem with it.

The shock of learning you need the surgery and having to schedule so soon is difficult, at best. The up side to it is most of us agree the wait is the worst part of the OHS journey. The shorter the wait, the better IMO I had a month wait before my second surgery, at Mass General with same surgeon as the first, and truly the wait was the hardest part of the whole deal.

I opted for tissue valve as I did not want to cope with coumadin or risk a loudly ticking valve. My surgeon explained he could never predict who would have a softer vs louder valve as petite little ladies can have very quiet ones and a barrel chested, large man might have the loudest valve. I can't stand a ticking clock and couldn't risk the noise.

Hopefully you can get everyhthing scheduled and done while your insurance is still in place.
ALL best wishes.
This is a very supportive group and it's always so good to hear from those who have been there and know first hand about the experience.

We're happy to help in any way we are able.

 

[neil]

dont worry about uci to much, i was terrified about all that stuff,i am the number one baby when it comes to hospitals etc, but i didnt have no memory at all of the vent,when i woke up i was very thirsty and sleepy and no pain , the waiting is the worst bit about ohs,it really isnt as bad as your mind makes it out to be, you will be just fine,

 

[Allisoninoz]

Hi, I'm in Melbourne, Australia, and am 44. I had the Ross Procedure done for my BAV (actually turned out to be unicuspid) nearly 18 months ago and feel great. It was a crappy few days but I don't remember much about it. My surgeon is one of the world's most experienced in the RP - he's done about 300 of them and is monitoring all these patients yearly. He has only had to reoperate on a couple of them. I'm a journalist and wrote about my experience. You can read it here ... http://www.heraldsun.com.au/ipad/a-diary-of-open-heart-surgery/story-fn6bn9st-1226058541539
You need to do what feels right for you. And it's certainly right that Ross procedures are best carried out by surgeons who are very experienced in that surgery. I like not having to be on Warfarin and I like the likelihood that I'll require another surgery for 20 years or more (I had two ops as a child, so I think three in my life is enough!). Do your research and find a surgeon you really like. Feel free to private message me with any questions.
Cheers, Alli

 

[Scott]

Julia, I had my syrgery last Sep 13th. I did not have any back or neck pain. Really very little pain at all. And my scar is about 5" long and is hard to see. If I had to do it again I would refuse the pain meds and take tylanol. I was sick for days from the drugs. I finally refused them on the third day. I was very afraid of the ventalator. I woke up still connected and choked for a few seconds untill I started to breath with the machine. Then it wasn't a problem. It's just one of those things your going to have to do. It will be more than ok. I really thought I had no symptoms but now I know that I had symptoms. I have more energy and feel better than I have in years.

 

[Rebecca]

I woke up on the vent and remember that I was so thirsty. I felt no pain when I woke up in ICU. I do not remember them taking the vent out. I had no pain when my drainage tubes or lead wire to chest were removed. I did have back pain for about three weeks. My heart no longer sounds like a washing machine. I did have some complication during surgery but Dr. Chen is a good surgeon so everything ended well. One thing that Emory forgot to do was call me to go over my meds. list before surgery. Thank goodness my oncologist told me to stop taking tamoxifen for fourteen days before and fourteen days after surgery because it can cause blood clots. I feel so much better now after having my valve replaced.

You need to not let your health insurance lap. There is a state insurance plan in GA for people that have preexisting health conditions. Let me know if you want more information. Larry King Cardiac Foundation also will help save lives by funding surgery for people that have no health insurance or find that their health insurance doesn’t cover surgery. http://www.larrykingcardiacfoundation.org/

Dr. Alan Wolfe is also one of Atlanta top doctor for aortic valve replacement. He used to be at Saint Joseph Hospital and he used to do the Ross. http://www.nghs.com/meet-the-surgeon

WomenHeart Champion (class of 2012)
WomenHeart.org WomenHeart of Fulton County Co Support Network Coordinator

Five year breast cancer survivor & Aortic Valve Replacement Dr. Edward Chen, Emory University Hospital, 10-13-11 (Freestyle Modified Subcoronary Valve) - Pig
Guard your heart, for out of it comes all of the issues of life. -- Proverbs 4:23