Surgeon/hospital shopping.

[Ethan]

Hello,
I just found out that it is time for me to get a new valve. I was told that there is some enlargement of the heart, and maybe a little more then they would like. This has of course got me a little WORRIED, but I still have to get everything moving along. My question are there any helpful websites or other resources for picking a great hospital and surgeon? I have heard something about there being information on doctor?s stats out there, but have not found any. All my early surgeries were done with my parents running the show for the most part. This makes it a rather new experience for me.
I met with a surgeon that my cardiologist suggested, and he seamed competent and easy to talk to. I do however want a second opinion as I don?t want any regrets with this! He suggested a St. Jude?s mechanical valve as, I am 28yrs old. The coumadin, noise, and other side effects while sounding annoying, pale in comparison to getting this done soon. I want to minimize any further damage. I guess I have grown a little attached to being alive
That actually brings up another question. Is there anything that can be done to help correct enlargement of the heart after fixing the valve?
Thanks,
Ethan
Ps. I am so happy I found this website

 

[JimL]

Hi Ethan and welcome. This is indeed a fabulous website.

Other people will come along and post the references to sites where you can check out hospitals and surgeons.

I was told that my heart had enlarged because of the stress on it before surgery. After surgery it returned to normal. I think that is a fairly common experience, although there is the caution to get the surgery done before there is permanent damage.

It's great to be attached to being alive!

 

[Harpoon]

Howdy. This is a pretty good resource for most of you questions all at once because a lot of people here are either about to have surgery or are looking into it or have already had it.... They're from all over the place (US and abroad) and can offer all kinds of information on various heart centers and their abilities just about anywhere.

I just turned 30, not much older than you, and got a St. Jude's valve within the last year. I was born with a heart condition which was corrected when I was an infant and I've lead a nearly normal life for 27 some years. I started getting sick about three years ago and ended up getting the valve and some other "touch-up" on the original surgery I had after birth. My heart was really enlarged and it's come down a lot. The enlargement happens when parts of the muscle are compensating for other parts which aren't working as well as they should. When this is corrected, the heart comes back to it's normal size, or at least close to it.

My heart's a lot better than it used to be. It's not as good as it was 5 years ago, but it's a heck of a lot better than it was one year ago!


There's a lot of stuff to sift through here and everyone loves to answer questions and share their own experiences and knowledge.

Welcome. =)

 

[Karlynn]

Welcome Ethan - you've "stumbled" into the right place. I had mitral valve replacement 12 years ago at the age of 32, found this site in August this year and can't believe I lived without it and the wonderful people here.

My heart was enlarged before surgery. That was one of the signs that the surgery needed to be done. My heart size went back down to the normal parameters after the replacement and has stayed that way until this year when, unfortunately, they discovered that my aortic valve is now a little leaky and my heart size has increased a bit.

As Jim said, for most, the key to regaining a normal heart size is to have the surgery done before permanent damage is done.

Coumadin gets a lot of bad press, in my opinion. It is a serious drug, no doubt, but is extremely manageable with common sense and common precautions. But we, as heart patients, must practice more caution than those without heart issues. We are blessed on this site to have an expert in the field as one of our members. Al Loddwick. and I recommend you visit his site www.warfarinfo.com for a lot of great information on Coumadin. He's always ready to jump in here when someone needs his expert advice too.

As far as the clicking noise of the mechanical valve. You can't hear it most of the time. You can in quiet rooms, tiled rooms and it makes for a great party discussion. I find the sound very comforting because I know without it, my life would be so much worse.

Welcome again!

 

[Ethan]

Hello,
Harpoon sounds similar to my history. I was born with a pinched aorta, and a bicuspid valve. The aorta was repaired when I was 6yrs. With a stint inserted later to patch things up around 17. All done at Boston Childrens Hospital. I got kind of lazy on my yearly eco and stopped going for three years until now. I now have to get the valve done within 3-4 months. I am going to have it done sooner if I can. I think I have learned my lesson on procrastination.
Thanks,
Ethan

 

[Nancy]

Hi Ethan-

Welcome to the site. You have a wonderful attitude in spite of just having found out about the need for surgery soon. Sounds like you've done quite a bit of research already, at any rate it will help give you a smooth transition into the pre-surgery phase.

Can't help you out with surgeons in your area, but there is sure to be someone who can.

My husband is the patient here. He's had 3 valve surgeries, an aortic, a mitral and a repair on the mitral. Both valves are mechanical, and he's been on Coumadin for 26 years.

We love to answer lots of questions and you won't find any lack of opinions here . Everything is fair game for vigorous debate.

So ask away and watch in amusement as we come up with answers.

 

[tiggerangelgirl]

iam also 28 but a female and have to have my tricupsid and mitral replaced , iam from the outer banks north carolina and have come to meet alot of the heart drs and surgeons,because of complications drs keep turning me away but i do know i have a list of some wonderful docs,which hospitial will you be using,i will try to get back real soon with the numbers and a list,keep your head up things kinda feel like thier out of controll when were this young and already are hearts are demanding some tender loving care,maybe when i feel better i can share some more.ill write back soon with a list

 

[ALCapshaw2]

Welcome aboard Ethan !

It sounds like you've already done a lot of research and pretty well know the issues.

By all means, proceed ASAP to Surgery, "Do Not Pass Go, Do Not Collect $200" and hopefully your enlargement will recede. You will be vigilant about keeping your echo appointments in the future now, won't you?

Valve Selction is always a 'hot topic' but at your young age, the St. Jude Mechanical Valve is a good choice. Tissue Valves tend to wear out after 10 to 20 years depending on type and individual, but they typically wear out faster in younger patients.

The Cleveland Clinic is the #1 rated Heart Hospital, but I suspect any Heart Surgeon with LOTS of experience who practices regularly in a hospital that does lots of heart surgeries (>1000/yr) will do just fine. I'm sure every heart surgeon who does valves is familiar with the St. Jude Mechanical valve so just ask for referals to active local surgeons and then ask them about their experience (number of AVR's / year, Morbidity and Mortality numbers, etc.) For young patients and first AVR, success rates should be over 97% at good hospitals.

Duke University Hospital is another good one, along with Emory in Atlanta and one or two in Nashville. Surely there is a good heart hospital closer to you in Virginia 'somewhere'.

'AL'

 

[dwfreck]

Ethan,

Welcome. One thing most of us on the site like to know are DETAILS. So, I'll save the others the chore of having to ask and say, "What are the details of your condition and upcoming replacement (which valve or valves; stenosis, insufficiency and/or prolapse; other complications)?"

I'm due for an aortic valve replacement in the near future and am facing the same questions you are. I'm ten years older than you are, and I've got my own family and my parents here in town (Cincinnati), so it seems advantageous to ME to have the surgery done locally, with the surgeon my cardiologist recommended or one of that surgeon's partners (depending on the procedure/valve I pick), both of whom I have met and like. Your social/familial situation may be different, so you may not mind travelling to one of the top rated heart centers. The other folks on the forum will continue to recommend them to you, or you may find their recommendations scattered throughout the various threads; check the pre-surgery section, in particular.

 

[Tom F.]

At your young age have you considered the Ross Procedure?