add another one to the list ...

[Jas0n]

after myriad exams and much worrying since this past august, it seems i will be having avr shortly. bit of history: i am a 22 year old semi pro cyclist who was incorrectly diagnosed with exercise induced bronciospams/asthma two seasons ago. last august - after the "asthma" never subsided - i decided to see a new cardiologist. two echos, one stress test (which i FINISHED!!) and one mri later, we were facing conflicting reports which did agree on one thing: i was suffering from regurgitation, though the echos and mri disagreed as the severity of the leak (echo said severe, mri moderate). after speaking with my cardio, we decided i would stop riding entirely - it is too hard for me, as a YOUNG competitive cyclist, to ride at a restricted pace - and we would complete another round of tests during christmas break. come january, i had another echo done which showed moderate regurgitation and an ejection fraction of 40%, down from 55-60% in august; though i should note, i was not told about the importance of this change until just a few weeks ago. that is, my cardiologist never brought this to my attention because he either failed to notice it, or didnt think it was an issue (not too happy with him right now).

when i graduated from college only a few weeks ago, i was anxious to start training and racing again so we decided to see a cardiologist/surgeon at Columbia who came very very well recomended. his initial concern was not related to the level of regurgiation, but to the change in my ejection fraction that the january echo suggested took place. after another echo done at columbia confirmed the depression, he scheduled a TEE which i completed - albeit with a bit of a bit of difficulty (apparently i didnt like having a tube shoved done my throat and i think i may have fought the doc a bit, as i dont remember the operation at all and seem to have had to be sedated a bit more than usual) - yesterday. the tee confirmed a moderate leak which on its own should not have caused the heart's depression that my heart seems to be exhibiting. the myopathy could have been caused, he argues, by myriad factors including viruses, but we must repair the valve before we can say whether or not a the heart will fully recover; the leaking valve merely exagerates the problem it seems. i was also started on enalapril to treat the depression. from what i have been told, the depresion does not seem to have been caused by the leaky valve, though it more than likely has had some effect on it. we will not know, however, how/if the heart will recover until months after the surgery. i think it also worth noting that this change came AFTER i stopped riding in the months between my august echo and my january echo (and doesnt seem to have change much since january).

so here are the questions, and i should thank you for even reading this far. i will be meeting with the chief of sugery at columbia in the next week. before i do so, should i consider getting a second opinion?? i feel a bit ridiculous to do so given the depth of knowledge the cardio team at columbia is extoled for. who else can i speak to (im in new york if one didnt notice yet)?? is it common for someone my age to require avr?? can anyone recomend a hospital specializing in patients of my age?? should i consider travelling to the mayo clinic or any other hospital?? has anyone expereinced myopathy and a leaky valve as seperate issues?? what questions should i ask the surgeon?? should i consider a ross or less invasive techniques?? am i exposed to any additional risk - aside from the more than likely need for future avr's - given my age?? has anyone else my age gone through avr??

it all seems so perverse right now. in august i was in amazing shape and now im looking at open heart sugery as a 22 year old !?! in the mean time, i havent been able to ride for the past 10 months (if you knew me, you would know how depressing this), my doctor made me stop rock climbing, i cant exercise with any intensity at all, and i've been prohibited from drinking, which is just another - albeit insignificant - blow; i hate being told i CANT do something, even if i have no desire to do it !!!

well thats it for now, end of rant. thanks for reading.

EDIT: well, its official now: on August 4th I will be have an AVR (with a donor valve, likely cow) performed by Dr. Craig Smith at Columbia Presbyterian Hosiptal in NYC

 

[Georgia]

Well, Jason, that's a fine kettle o' fish, isn't it? I'm so sorry you're dealing with such a huge problem at your age. The good thing is that you appear to have really good docs watching out for you and they're on top of your issues.

I'm not an av patient, so I really can't help you there; but I wanted to tell you that we know how shocking this news must be for you. We're here to offer all our support as you prepare for this surgery and recover from it.

Others with better knowledge than I will be along to respond.

 

[MikeHeim]

I can respond on some of your issues. One year ago this month, I was 28 and as physically active as I had ever been. On 12/5/04, I had run a 3:36 marathon (not my best, but I was pretty happy with it). I surfed 2-3 times per week, biked about 60 miles, lifted weights 2-3 times per week, and continued to run. In July, I decided to train for the Long Beach Marathon, which takes place in October each year. When I began my training runs, I immediately knew something was wrong. After running about a half-mile, I would get chest pains and start to wheeze. I went to a GP, he heard a murmer, and sent me to a Cardiologist for an echo. The echo showed some mitral valve regurgitation, but based on my symptoms, he had me get a TEE. The TEE showed much more severe regurgitation than the original echo. He then referred me to a surgeon and I had the valve repaired in December.

I had never been diagnosed with a murmer before July of last year, and had absolutely no inclination that I might have a heart issue. As you were, I was incredibly confused, shocked, etc. because I thought I had always done a GREAT job of taking care of my heart. The months between July and the surgery were some of the longest of my life. I couldn't lift weights, run any faster than at a slow jog, or surf. I drank (BTW, I have no idea why you would have been prohibited from drinking) way too much and too often to compensate, and I was pretty much an emotional mess. Unlike many others, I was eager to have surgery and get "back to normal". I scheduled all of my appointments as quickly as I could get in, and when I finally met with the surgeon, I scheduled my surgery for the first day he had available.

As far as the second opinion question, I wouldn't bother getting one if you are satisfied with the first answer you get. In my case, if the Cardiologist or Surgeon recommended I wait for surgery until my symptoms got worse, I would have kept going for more opinions until I got one who supported my desire to get "fixed". My quality of life was so low (in my opinion) when I couldn't exercise that I couldn't imagine putting off the surgery that would get me back to normal. I couldn't imagine spending any more of my (relative) youth sitting on the couch just waiting to get worse.

Other people will come along and help you with some of the other questions. I just wanted to pipe in and say that my case sounds extremely similar to yours. Send me a PM if you have any other questions or think I could help you in any way.

I certainly wish you the best going forward.

I just realized this is my 6-month surgery anniversary!

 

[Jas0n]

I drank (BTW, I have no idea why you would have been prohibited from drinking) ....

mike: thanks for the responce. i too want to get this taken care of as quickly as possible so i can get back to living my life the way i want to. as for the drinking, apparently drinking has been shown in some people to cause depression of heart function, and so we are just being safe. no biggie, but its just another thing i CANT do, which annoys me. thanks again.

 

[Naomi]

Jason, my cardiologist recommended that I go to Mayo or Cleveland Clinic when I need surgery (I'm 26). He said they would have the most experience and at my age I want to have a surgeon with a TON of experience under his belt.

I also asked how he felt about the Ross procedure and he said it's falling out of favor for most people because most surgeons don't have enough experience with them and it makes you a 2 valve patient rather than a 1 valve patient. I'd say you should do your research and ask your surgeon about it. There's a lot of good threads here regarding valve selection. Bottom line is that whichever valve you choose will save your life so be grateful you have some options!

When you meet with your surgeon I would just make it clear that you want to get back to your usual active self. Because you are young and in shape, your recovery should be quick and hopefully uneventful!

Good luck & keep us posted!

 

[joanne6]

I don't have answers to your questions and I am way older than you are but I wanted to say hello and tell you to keep posting.You sound like you need all the support you can get. I can't blame you for that. I have said many times that I wish I had known about this site before my surgery. I looked at your public profile and the day you joined this site was the day I had my surgery.
Hang in and take it a step at a time.

 

[Sona]

should i consider getting a second opinion?? .

I believe in getting second opinion. I saw 3 cardiologists before deciding on MVR timings.

i feel a bit ridiculous to do so given the depth of knowledge the cardio team at columbia is extoled for. who else can i speak to (im in new york if one didnt notice yet)??.

Ask your doctor, I asked and they sent me to 'Standford Hospital in Palo-Alto' for second opinion. Even though the opinion was about the same, it gave me a lot of confidence.

is it common for someone my age to require avr?? .

No, its not common ( to my knowledge ), but not that uncommon either. Growing age does take toll on heart, but there are other factors which affects almost any age, like viruses, birth defects etc. I have seen cases as young 3 year. I don't have AV issue, but Mitral Valve issue and had an OHS when I was 7 year and again 3 week ago

anyone recomend a hospital specializing in patients of my age?? .

Don't know if there is any, and I do not believe there is much of a difference in size/shape of heart. Its the experience counts in my mind.

should i consider travelling to the mayo clinic or any other hospital?? has anyone expereinced myopathy and a leaky valve as seperate issues?? .

Mayo clinic is famous and suppose to be one of best. I had my MVR done at Kaiser San Francisco, and am happy with outcome.

what questions should i ask the surgeon?? .

Type of valve. Condition of other valve.

should i consider a ross or less invasive techniques?? .

Only your surgeon or cardiologist can tell

am i exposed to any additional risk - aside from the more than likely need for future avr's - given my age?? .

any type of infection.

has anyone else my age gone through avr??.

yes, there are other members here on the forum of your age or younger. I am a little older ( 29 year ).

 

[nearyneary]

has anyone expereinced myopathy and a leaky valve as seperate issues??

Hi Jason-- My situation wasn't exactly the same as yours, but I have had dilated cardiomyopathy for 30 years (due to a viral infection when I was six months old). It's always been stable, though, with an EF of about 45. I had my mitral valve repaired last year at the age of 29. I was really freaked out when I found out that I had to have surgery, because I was afraid that the cardiomyopathy had gotten worse and caused the valve to leak. I got a second opinion from Dr. Jeffrey Borer at New York Hospital/ Cornell-- he is an expert in valve disease, and he assured me that the valve and the cardiomyopathy were 2 separate problems. It might be worth seeing him-- he doesn't take insurance, but you may still be able to get partial reimbursement from your insurance company. Good luck, and PM me if you have more questions!

 

[maka]

Hi Jasom

Not sure whether I can be of any help, but want to let you know that I understand how you are feeling. I?m much older than you and can imagine how difficult this most be for you being so young. I?m also from NY and highly recommend my cardio, Dr. Roistacher She is from Memorial Hospital (yes, I know, a cancer center but highly recommended to me by my oncologist). She is definitely a no-nonsense lady that will tell you exactly the way she sees it. I was operated last August at the NY Presbyterian/Cornell hospital by Dr. Krieger. If you want her telefono number let me know

 

[marky]

Welcome..
I probably can't answer many of your questions..as I am older and didn't have AVR..
but you will find a great support community here!!
keep posting.

 

[Der Biermeister]

Jason
I know that once you get through the AVR surgery and heal, you can return to a fairly normal sports regimen. However, I am not sure you can return to SUPER athleticism, at the highest level of competition with such activities as extreme power lifting, trying to run a mile in record time, doing the Ironman, etc., etc.

Perhaps some of the younger athletes on here can comment on this.

But I can also tell you that you WILL feel better no matter what activity you are doing.

 

[Jas0n]

However, I am not sure you can return to SUPER athleticism, at the highest level of competition with such activities as extreme power lifting, trying to run a mile in record time, doing the Ironman, etc., etc.

Perhaps some of the younger athletes on here can comment on this.

But I can also tell you that you WILL feel better no matter what activity you are doing.

as long as i feel better after the surgery than i did before, i have no doubt my performance on the road will be at the highest level. it actually gives me something to look foward to; that is, the idea that i could ride at such a level with such a limiting factor as a leaking valve only gives me hope about my future as a cyclist. imagine what i could do with a normal heart!!

so who's doing a century ride with me on my 6 month anniversay?? i was thinking double century, but that may be too ambitious. maybe a metric double = 120miles?? ill try and convince my surgeon to sign a contract saying that if i let him operate on me, he will in return ride with me on my 6 month anniversary.

 

[PJmomrunner]

we decided i would stop riding entirely - it is too hard for me, as a YOUNG competitive cyclist, to ride at a restricted pace - and we would complete another round of tests during christmas break. come january, i had another echo done which showed moderate regurgitation and an ejection fraction of 40%, down from 55-60% in august

Jason, I'm sorry you find yourself in your current medical circumstance, particularly at such a young age. The info quoted above reminds me of a conversation I once had with my father-in-law (who has been a semi-elite marathoner and continues to be an athlete (cyclist)). He mentioned how important deconditioning is to the elite athlete (and he may have been talking specifically about cyclists/triathletes--I'm not sure) because if they abruptly stop training they risk causing heart function problems by not allowing the heart to gradually remodel, so that instead of remaining functional at gradually reducing training levels, they are left with big, muscular athlete hearts that quickly lose tone and become ineffective.

I briefly attempted to look for studies relative to this on PubMed, but I really didn't come up with anything. I do wonder if you stopped cycling abrubtly and if this could be the cause of your deteriorated ejection fraction. I think it's a question worth asking of someone who has knowledge of elite athletes' hearts. If it's a known phenomenon, there may also be a known treatment that perhaps doesn't include surgery. Perhaps you could find a specialist at a sports medicine center or by searching PubMed to find out who's studying elite athlete's hearts.

Good luck.

 

[RCB]

Jason,
You have had a tough break, but you must try to stay in the race.
I would remind you to be a student of history. Sports are full of examples of people who had life threatening health problem and came back to be at the top of their sport.

I would get a second opinion for your own peace of mind. You need
to feel that you have tried your hardest. Take control of your life, give Cleveland Clinic a call. They are extremely helpful at telling you what you need to send them and most of the time you don't even have to go there to get a second opinion. The cost is around $500.00 last time I checked and is covered by most insurance. The information is all at their website.

Lastly, don't feel alone. There are many young kids who have gone through the same things as you, only at a much younger age- I did it over 46 years ago. Best of luck to you and remember, we are here to help you.

 

[LLJ]

JaSon: Nothing wrong with a second opinion. In NYC you have access to the best there is. Columbia,NYU (mitral man had a great surgeon) and off course I love my guy in good old New Jeresy;Dr. John Brown III. You need'nt go far ,especially if commutability for family is a factor. If you were in the middle of nowhere it would be different. I guess every almost every major city has a remarkable cardiac program.
As far as fitness,well look around just here. There are many of us in the best shape of our lives when we had to lie down under the knife and get OHS. You will come back, you will race again. Keep us informed
LLJ

 

[Jas0n]

I briefly attempted to look for studies relative to this on PubMed, but I really didn't come up with anything. I do wonder if you stopped cycling abrubtly and if this could be the cause of your deteriorated ejection fraction. I think it's a question worth asking of someone who has knowledge of elite athletes' hearts. If it's a known phenomenon, there may also be a known treatment that perhaps doesn't include surgery. Perhaps you could find a specialist at a sports medicine center or by searching PubMed to find out who's studying elite athlete's hearts.

Good luck.

i did stop cycling quite abruptly, literally within a week; i did, however, continue to be active (rock climbing 5 times a week, boxing). if you have any further research related to this phenomenon, i would be very interested. i wonder if what you are refering to is called "atheletes heart," as i asked my cardio a question regarding my recent lack of conditioning and whether or not this may have effected my heart's depresssion and he commented that i was not exhibiting "athlete's heart," which was a term i was not familiar with.

by the way guys, thanks for all the help and the already prodigious support.

 

[PJmomrunner]

Hi Jason. I talked to my father-in-law today and he affirmed my recollection of our conversation. Unfortunately, it was information he gained in a conversation he had with the doctor who did the research in the 1950's at Wheaton College in Illinois, and who himself was an elite runner. I have not exhaustively tried to identify him or find his research.

I did find a few publications on PubMed that you may be interested in. The first two are about the athlete's heart. The third addresses heart function of the deconditioning athlete, and the last discusses the difficulty in assessing ejection fraction in a a patient with LV hyperkinesis.

http://www.ncbi.nlm.nih.gov/entrez/..._uids=11864923&query_hl=4&itool=pubmed_docsum

http://www.ncbi.nlm.nih.gov/entrez/...t_uids=8435237&query_hl=4&itool=pubmed_docsum

http://www.ncbi.nlm.nih.gov/entrez/...t_uids=8435237&query_hl=4&itool=pubmed_docsum

http://www.ncbi.nlm.nih.gov/entrez/...uids=10149889&query_hl=33&itool=pubmed_docsum

 

[ALCapshaw2]

Welcome to our world Jason.

My condition is nothing like yours BUT I agree completely that 'fixing' the problem SOONER is definitely better than LATER. Waiting only guarantees that your heart's condition will deteriorate. Many Cardiologists like to wait due to 'Old Time thinking' that it was best to postpone the 'risks' of surgery.

Open Heart Surgery has evolved into a Highly Refined Art with extremely LOW Risks (1% mortality plus 1% stroke risk) for first time patients under age 60.

The response you received from Mike Heim was EXCELLENT in my opinion.

The only thing I would add is that you look into the newer (third generation) Mechanical Heart Valves such at On-X, ATS, and St. Jude Regent. These have all been designed with an emphasis on improved fluid dynamics which improves heart function and reduces risk of Clot formation. Several studies are now underway in Europe and the USA to evaluate the use of lower anticoagulation and/or aspirin only therapy. It will be some time before the results of these studies are compiled, but wouldn't it be nice to be in the 'winner's circle' should they come back in the affirmative?

Do a SEARCH for discussions on those valves in the Valve Selection Forum and also check out their websites for further information. Be sure to ask your Surgeon(s) about their experience with these new valves.

I second the recommendation of getting a second opinion from the Cleveland Clinic which is the #1 rated Heart Hospital (Mayo Clinic is #2). Their on-line second opinion service sounds like a great way to go.

Finally, note that the 'regular' St. Jude Mechanical Valve is the Gold Standard for Durability and Longevity (but leaves something to be desired for an athlete who wants the best performance and lowest risk of clot formation).

With your positive attitude and training ethic, I'm sure you will 'breeze' through surgery to an awesome recovery!

Best wishes,

'AL Capshaw'

 

[Jas0n]

thank you

thank you

thank you everyone for the plentitude of replies. i met with my surgeon yesterday and we decided to go ahead with the surgery. though it is not immediately necessary, we are taking a sooner rather than later approach. accordingly, i will be having avr with Dr. Craig Smith at Columbia Presb. on the morning of August 4th. i dont believe i will even pursure a second opinion; i have quite a bit of faith in the program at columbia.

in discussing valve choice, i have know for a long time that coumadin - at any dose - would not be a viable option if i wanted to continue cycling. namely, road racing involves the certainty of AT LEAST one crash person season, and the associated road rash - though not necessarily life threatening - could pose serious bleeding risks, nevermind all the mountain biking (cuts and breaks are a certainty) and the rock climbing i do. we decided on a cow valve since they are more proven at the moment, though he did admit that bovines are being used more and more. also, we will start the surgery as a minimally invasive procudure (the only diff in the way he does it, is that bottom of the breast bone will remain in tact, therefore the incision is about an inch to two inches shorter) and he will go with the traditional method if he needs more access. dr. smith mentioned that he is perfectly comfortable with either method and the min. invasive is not any more difficult, so i opted for the shorter incision and the small bit of breast bone to remain in tact (i figured this might help post op comfort a bit).

if all goes well, i will be back to riding - albeit at a deconditioned pace - within 6 weeks. i am the best man for my uncle's wedding in VA on sept 16th, so i will likely have to fly down given that my car is more than uncomfortable (i drive a very very stiff sport car which prob wont go well with my healing sternum). i look foward to riding again, which is huge!! i sold all my bikes last season so i have the joy of getting some new rides!! well, thats it for now.

the countdown begins!! thanks a million.

 

[MikeHeim]

I know how great it feels when everything is finally decided and the plans are made. Best wishes moving forward.