My choice: Synergraft aortic homograft

[John Cochran]

As a 50 year old male with a bicuspid aortic valve, I've known for several
years that my valve would eventually need replacing. Up until this year, I
was pretty sure the Ross Procedure would be my choice. However, a new
option, not yet widely available, has changed my mind.

On April 24, I will be having my aortic valve replaced with a Cryolife
Synergraft aortic homograft (human valve). The Synergraft process
decellularizes the donor valve, leaving behind a functional collagen matrix.
This valve is not attacked by the immune system like a conventional
homograft, and in about one year my own cells should have repopulated the
valve, at which point it becomes my own living tissue. It is believed that
calcification will be dramatically reduced, or even eliminated.
Unfortunately, there are no 20-year studies on this technology since it is
so new. The Synergraft pulmonary valves (human) have been being used for
some Ross procedures, but it is only recently that the thicker aortic valve
(and therefore harder to process) has become available on a very small scale
through a couple of centers in the United States.

While there is great promise with this "tissue engineered" valve, e.g., long
and perhaps permanent solution, no blood thinners needed, etc., there are
also some risks. First, the valve may end up not repopulating, in which case
the life of the valve would be reduced. Second, the Synergraft process has
not been proven over a long period, so other unknown risks may exist. I
picked this option over the Ross to avoid the potential of having a
two-valve problem and because it reduces the amount of surgical trauma to my
heart. Psychologically, it is pleasing to think of this implanted valve
eventually becoming my own living tissue.

I am VERY anxious about the whole surgery experience, but this forum has
helped immensely by having a better idea of what to expect in general. I
will try to keep you all posted on my progress after surgery, and would be
happy to answer questions about this new valve.
You can email me at:
[email protected]

Best to you all,
John Cochran

 

[srwieland]

Hi John,

Welcome to the small group of brave pioneers trying out the new CryoValve-SynerGraft valves. I believe that I was the first of those who frequent this site to have received such a valve, about 10 months ago.

I encourage you very much in your choice of valve. My first 8 months after surgery, I had excellent results, about as good as you could ever hope for.

I have, however, recently developed a problem. My new valve has begun to leak. They put me back on meds (Procardia), which was disappointing since I had been completely off meds for over 6 months. Unfortunately, even though I had taken Procardia for many years before my surgery, this time around I did not tolerate it well and ended up in the ER twice for near fainting episodes. They have now switched me to Accupril on which I am doing better, although still feeling woozy and fatiqued more than I should. About 10 days ago, I underwent a cardiac cath procedure and they got a better idea of the extent of the leak, etc.

So, all is not well in Paradise for the moment! In any case, I meet my surgeon today to discuss how to proceed. My expectation is that he will recommend a TEE (transesophageal echocardiogram) to get a better look at the leak from the inside. Worst case: the new valve is a loss and I'm back to square one, probably getting a mechanical valve with a lifetime of Coumadin, etc. My best hope: the leak is not in the valve flaps but the root and can be repaired. I think there is a good possibility of this because they had me in the OR for a long time during the first surgery since they had a lot of peripheral leaks to seal after taking me off the pump. My suspicion is that one of these post-op leaks has reopened, otherwise why I did so well for 8 months and then started leaking again? Then again, the valve could have a structural weakness or my body could have reacted to it over time despite the antigen removal, or whatever.

Another open heart surgery in any case but I prefer one that would preserve this valve which I still have a lot of faith in. I'll keep you posted.

By the way, Jennie is also active on thise site and is scheduled to receive the same valve as you around the same time.

Best of luck and our prayers are with you and your family,

Steve

 

[Mb]

Steve:

So sorry to hear about your "new" leak. Best of luck to you.

My first reaction to new surgical procedures, is invariably one of doubt. However, I always remind myself that if not for the people who are willing to try the new procedures out, how will the medical profession find a better way!

So, thank you both, for being so brave!!

Marybeth

 

[Nancy]

Hi Steve-

I'm sorry to hear about your leak. Joe also sprung a paravalvular leak in his new mitral mechanical, maybe you remember, but they were able to go in minimally invasively and were able to do a repair. I'm not sure they could do a minimally invasive on the aortic valve, but at any rate, I hope you don't have to face another surgery.

My thoughts and prayers are with you for your TEE.

Keep us posted we're your friends.

 

[sylviayasgur]

hi steve!
i'm so sorry to hear about your leak. you must have been devastated. i can relate...
joey, upon having his routine 6 months echo, it was discovered had a mod. to severe leak. they did a tee on friday and we are meeting with the surgeon tomorrow. it seems that his valve has a mild, trivial leak that they were aware of when he left the hospital. unfortunately, a coronary artery seems to be leaking. the cardio has never really seen this before (although he does most of the tee's in this office and is very knowledgeable).
we're not sure if this would seal on it's own or not. hopefully the surgeon will know more tomorrow. he also suggested joey have another cath so they could clearly see if the dye leaks out of the artery. this will confirm that the leak is where they think.
he did say that they won't be opening joey up in the immediate future unless he becomes symptomatic.

i truly understand how you must be feeling. i am afraid to be optimistic with this new finding.
but as billy mccomb told me, atleast you have a sign that something is wrong. this way it can be fixed.
unfortunately, his wife myrtle didn't have a sign. he really made me see things differently.
i don't mean to belittle your disappointment and upset.
please let us know when you go for the tee and what they say.

you are in our thoughts and prayers,
sylvia

 

[srwieland]

Thank you all for your sympathies.

I'm still much better off now than I was last year before surgery, but my surgeon has confirmed that I will need to replace this new valve again before too long, probably in a year or two. I'm still struggling being back on meds making me whoozy. But my ejection fraction is 60%, which is very good, considering, and my heart size is between 56-57, which is at the upper limit but OK nonetheless.

My surgeon is not inclined to do a TEE at this time since I've had 3 echo's and 1 cardiac cath in the last couple months and he feels he would get better pictures but not enough additional knowledge to warrant it at this time.

I will be getting a second opinion soon. I'm thinking of going to the Mayo Clinic in Jacksonville, Florida, which is not too far away. Does anyone have any experience or knowledge of the cardiovascular surgeons there?

I'll keep everyone posted. I got distracted a lot from my friends on this site while I was doing so well, but now that I'm again in need, I'm a friend indeed!

Thanks again everyone.

Steve

 

[John Cochran]

Steve,
Sorry to hear you'll need to have the valve replaced, especially since I'll be having a Synergraft aortic valve implanted on 4/24/02. For those of you who are new to the Synergraft story, Steve was the true pioneer here, getting a Synergraft pulmonary valve implanted in the aortic position. It is only in the last couple months that the aortic version of the Synergraft valve has become available.

Steve, is there any good explanation you've gotten on what might have gone wrong? In any case, I'm wishing you the very best. If you elected to go to Mayo in Rochester, Dr. Kenton Zehr is the man you should see.

Hang in there Steve!
--John

 

[srwieland]

No, unfortunately no good explanation. My surgeon says the only way to know is when it's explanted, which he projects won't be for at least a year or two. I know they had some trouble plugging me up during surgery, so I think there is as much possibility that the defect was the result of the surgery as it could be structural on the part of the valve. So, I'm not yet ready to conclude for sure that the valve is at fault. I'm hoping a second opinion might be able to tell me more, but if indeed no on can say until my next replacement, the jury will be out for a while on this.

In any case, I will be following what happens with you, Jennie, and Mara very closely in the meantime, for obvious reasons.

Everyone who has had to undergo valve replacement is indeed a brave soul and again I am reminded of how dear my heart buddies have become to me.

Thanks again,

Steve

 

[Mike in Florida]

Hey Steve,
So sorry to hear about the problem you've got
with your valve. Been wanting to stop by your
office to chat, but just get caught up with work
and all. Will try to stop by soon. Stayed home
from work today, due to an extremely sore arse
after falling off the top of an 8 ft. ladder
Saturday while doing side work. Hope things
work out for you. Good idea to get a 2nd
opinion, I would definitly do the same.
Hang in there Steve, will be talking to you
soon.

Mike in Florida

AVR/MVR St. Judes mechs.
By Tomas Martin at Shands at U.F.
Chronic A-fib
Sore arse

 

[srwieland]

Damn! Are you sure you won't need 'arse' replacement?

Been busy too. Stop by any time at work. I've moved, though. My office is hard to find; truly a bunker hidden in the depths of the Health Science Center. My phone number is the same, though. Call me at 6-1202 and I'll give you directions or we can meet somewhere.

How's the a fib? Hope it's better than before.

Take care,

Steve