New member with surgery on 6/2

[Luke]

Hello Everyone,

I'm new to this site. It was discovered within the past month that I have bicuspid aortic valve stenosis. I am scheduled for the Ross Procedure on June 2. I am 38 years old and never thought I'd be facing something like this at my age. I am grateful for this site and being able to see that others have dealt with this. To be honest... this is really messing with my head a bit. I find it difficult to cary on my daily duties. I'm tired a lot and my head is not in the game with work. I ask for your prayers as I get my life in order before this procedure.

Luke

 

[buncle]

Everything your feeling is normal.There is a light at the end of the tunnel and you will feel alot better after your surgery and recovery.Think positive -it will
be over soon.Prayers on the way now.

 

[mwkentner]

Luke,
welcome, you'll find lots of information here and even a few new questions. I was in your shoes 11 yrs ago at your same age. I had the same problem and didn't even know I was sick until a work physical. what you are feeling is quite normal and yes you will dwell on it. Ask questions here and do some homework It will make you feel a bit better. There are options as you read everyones story. Use the information given to you by your doctor and research your condition. As buncle said there is light at the end of the tunnel and surgery will make it better
MWK

 

[Luckyguy17]

Welcome Luke,

will be a few weeks ahead of you, also replacing bicuspid aortic valve and like you had a few months to ponder and prepare.

The forum will be beneficial to you in understanding the process as well as receiving the education which will allow you to have the important conversations with cardiologist and surgeon in making choices.

the process may seem overwhelming and intimidating right now, but it will improve and make every effort at keeping a positive state of mind.

All the best to you

Gil

 

[nngbwh]

Welcome aboard Luke.

 

[Ross]

It is a huge smack in the face when your told you need this surgery. We've all felt it and a few of us, a few times now. While bad things can and do happen, the overwhelming majority of patients make it through just fine. Focus on the positive, think about things you want to accomplish after your better and get on with a new life.

 

[dick0236]

Welcome Luke, you will be able to get a lot of good info from this site. Although you may find it hard to accept, you are fortunate in that you are correcting the problem so soon after the diagnosis.

 

[acr]

Welcome Luke. This is the best place for support and good advice. I can relate to how you're feeling, I was two years older than you when told. And yep it is a smack in the face. Fortunately it didn't mess with my head too much, though I won't deny that I had a pretty negative first week after being told. Just go with the flow, you can't change anything about the outcome (other than refuse the surgery, and thats not an option!). I'll keep you on the prayer list.

Ade

 

[kpearse]

Welcome aboard Luke.

I agree, get it done and move on with your life.

 

[ryen0]

Hi Luke. I know how you feel. I had my surgery when i was 27 and believe me hearing "your way too young" gets old quick. But the upside is that the younger you are the less chance of any complications and more often times a quicker recovery. Good luck on your surgery, i'm sure you'll be fine!

 

[Luke]

Thank you everyone for your words of encouragement and prayers. It will be great to have this over with. In preparation for the surgery the Doctor has had me quit smoking. I'm on my 4th day without a cigaret and no one has been injured so far It's a bit too much all at once, and the timing at work could not have been worse. (ok, ....whining over....) I look forward to getting know you all here.

Luke

 

[Luckyguy17]

Good on you luke, you have the right amount of time to get your ducks in a row and be prepared, check out the tips on pre op checklists available all over this forum, so that you can plan for what can be planned for.

Don't forget haircut, nose hairs and toenail clipping pre op (grin), seems these are also important

know what you mean about leaving work, but they (work) will manage, as you would not be any good to them if you do not get it done

all the best

Gil

 

[Daren]

Luke, Prayers on the way for you. Dont feel bad about your head not being in the game right now. When I had my Mitral valve repaired a year and a half ago I was a basket case before the surgery. Sometimes you have to get lost before you can get found. The folks here are real good and know what you are dealing with so dont be afraid to ask them questions. Stay strong Brother.....Daren

 

[ARGreenMN]

You've come to the right place!

You've come to the right place!

I don't even remember how I stumbled upon this site a couple months ago, right after being told (after an annual echo cardiogram) this was probably the year I was going to have to have my bicuspid aorta valve replaced. In that short 2-month period between then and now, I've gone on to have an angio, which confirmed this was the year, scheduled my surgery, had my surgery, and am now recovering at home (and doing very well).

I'm telling you - this site is a Godsend!!! I don't know who started it (I suspect Ross might have been one of the early founders, but I've never asked) but thank God they did. The people in here are just amazing, and along with my surgeon and other doctors/nurses have been the main thing that got me through this. It's more than a resource for questions - it's a support group. It's scary to think what it would have been like without everyone in here.

Make sure to understand exactly what you're facing, what your options are, etc., then, stay busy right up until your surgery date. That's my advice anyway. Think of all the things you won't be able to do for about 3 months, and get as many done as you can before surgery. I think that helps keep your mind off the actual surgery because you end up racing against the clock to get everything done before the surgery. There's no sense fretting over the surgery because it's not optional - gonna happen whether you want it to or not - so just focus on other things. It'll be over with before you know it - esp. if you stay busy. And the biggest message from everyone in here, that finally sunk in with me is - chances are EXTREMELY good you're going to be just fine!!!

Keep us posted as you get closer, and then again once you feel up to it after surgery. In a few short weeks, you'll be comparing notes and helping the rest of us who are "post surgery" calm the fears of those that are still in the 'waiting room'. Best of luck and make sure to ask any questions you have - this forum is just awsome!

 

[skeptic49]

Welcome, Luke. There is never a good time to get the news that your membership in the BAV club entitles you to a trip under the knife. You'll do fine. Keep a positive attitude and post here often.

Best wishes,

Jim

 

[ALCapshaw2]

Luke,

Your post raised some concerns in my mind.

First, you need to know that the Ross Procedure is a Very Complex Surgery, requiring skills and experience beyond the 'comfort level' of most Heart Surgeons. I would want to know how many Ross Procedures this Surgeon has performed in his career and in the last 12 months and how his patients are doing. What are his Morbidity and Mortality statistics?
The Most Prolific Ross Procedure Surgeon in the country is Dr. Paul Stelzer in NY. He has performed just over 400 the last I heard.

Second, BAV is often associated with Connective Tissue Disorders (I'm thinking maybe 25% but not really sure of that number). Connective Tissue Disorders (CTD) are often associated with Aortic Aneurisms (and sometimes/rarely, Brain Aneurisms). The Gold Standard for detecting Aortic Aneurisms are either a Chest CT or MRI, performed BEFORE Surgery. Aortic Aneurisms are often NOT detected by basic Echocardiograms. I always encourage BAV patients to find a Surgeon who has considerable experience treating patients with BAV and who KNOWS how to Recognize Connective Tissue Disorders (often only confirmed after they 'get in there') AND how to deal with such Tissue. Such Surgeons are most often found at Major Heart Hospitals. Johns Hopkins in Baltimore has such experienced surgeon(s).

Third, IF you have a Connective Tissue Disorder, I'm thinking that the Ross Procedure might not be a wise choice because of the possibility that the harvested valve may be prone to early failure. Because of the possibility that your First Choice may not be viable once the Surgeon 'gets in there', it is wise to also have a Plan B, agreed to in advance by your surgeon.

You may also want to know that the Cleveland Clinic which is the #1 Rated Heart Hospital, no longer recommends the Ross Procedure for most patients because of a high incidence of Early Failures, even in non-BAV patients. You may want to check their website or call the Cleveland Clinic to confirm if this is still their policy.

Sorry to be the one to bring up these issues, but if I had BAV, I would want to KNOW Before Surgery whether I also had CTD and be SURE my surgeon could handle it appropriately. We have had BAV members whose valves failed due to stitches not holding their valves in diseased tissue and had to have a second surgery from a Surgeon skilled in dealing with diseased tissue to save their lives.

ALL of these issues can be dealt with successfully IF you have a Surgeon with the Right Knowledge and Experience.
If I were considering the RP, I would want to at least get a second opinion from Dr. Stelzer and probably even consider traveling to NY to have him perform the procedure.

Please understand that my purpose in raising these issues is so that you will be fully informed about the issues and risks treating BAV and possible CTD. You would be wise to discuss these issues with your surgeon to verify his experince with these issues.

'AL Capshaw'

 

[ALCapshaw2]

Luke -

I forgot to mention that there is another Forum on VR.org that may be of interest to you,
namely the BiCuspid Aortic Valve and Connective Tissue Disorder Forum.

You can find the stories of other BAV patients and a Lot of useful Information on those conditions in that Forum.

FWIW, I became interested in BAV and CTD after reading the compelling story of one (former) member whose valve was becoming 'unstitched' due to the stitches failing to hold in diseased tissue. One of the Top Aorta Surgeons in Texas saved that patient's life. Unfortunately those posts were deleted when that member left but other similar stories are still posted. I have followed that forum closely for several years now.

'AL Capshaw'

 

[ALCapshaw2]

Here's another BAV patient's story from the BAV and CTD Forum with an explanation of the variations in how BAV can present itself in the larger population.

BarbJean: I guess you remember that I was diagnosed with Marfan Syndrome 20 years ago and then down-graded to a diagnosis of "Marfan-like Syndrome" and finally, after a trip to Stanford, was found to have BAV with an aortic aneurysm. A lot more of the population has BAV with some connective tissue involvement than have Marfan syndrome. Some people, like me, have lots of other connective tissue problems with our BAV. It seems that there is a sub-group (without a nice and neat name like Marfan Syndrome) who have a specialized syndrome with connective tissue problems. (On the other hand, there are lots of BAV people who do not have connective tissue involvement and perhaps many more people who never know they have BAV and live a long life without heart or connective tissue problems.) Oh, and then there are people like my friend Carol who have aortic aneurysms but have perfect hearts. It's complicated.

Maryka

Aortic Root replacement, Dec. 23, 2008, Johns Hopkins, Dr. Duke Cameron
St. Jude mechanical valve with dacron tube for aneurysm.

I recall reading somewhere that 2% of the general population has BAV

'AL Capshaw'

 

[heartman77]

Luke.....my thoughts and prayers will be with you.....Ill having my surgery on the 9th so i know how you are feeling....but i have a lot of faith and have felt so badly that i am looking forward to feeling so much better when all is over.....We can get though this buddy......We can lean on each other and all the other nice folks here...many who have gone through this and are still here smiling and posting

 

[Bina]

Congrats on the quitting of smoking. Best thing you can do for yourself. Looking forward to your scar pics.
(I am another bicuspid aortic stenosis person)