Help! My 2nd artificial valve seems to be letting me down - now what?

[charlottekaye]

Hello Everyone,

Born with a bicuspid valve, at age 25 I had an AVR (porcine valve) in 1981 at NYH, William Gay, surgeon. Lasted till 1997, but just barely - my then cardiologist let me go too long before re-replacing, and - a piece of calcium broke off: wow was I lucky to survive that. After 5 weeks of unnecessary pleading, screaming and yelling, I finally convinced my then-insurer to let me go to a very experienced surgeon rather than the newbie they were pushing on me.

In 1997, when I was 40, Dr. Douglas Murphy at St Joe's in Atlanta implanted a Carbomedics valve, and - there was a small peri-valvular leak from the get-go.

(I wonder if I would have had a better outcome with no peri-valvular leaks if I had been sent for re-replacement early enough.)

(BTW - THANK YOU Dr. Hochreiter of New York Hospital, Dr.Paul Phillips now of Clearwater, Fl.)

I had about 15 pretty good years. Now - I'm hearing that my "leak" has been upgraded from mild to moderate, and - I am not feeling well at all. My aorta is dilated, and I finally found a cardiologist who would tell me what was going on : (Tissue growing into the valve, I believe he said.)

Of course, with a mechanical valve, I am not a candidate for the new cath procedures.


Has anyone on this Forum gone through 3 AVR's?

I would be MOST grateful for any and all comments and suggestions.

Thank you so much, everyone!

 

[ski girl]

Charlotte there are several people on here who have had three AVRs and no doubt they will speak up. I've had two within the space of one year, Anthony had two within the space of three months . . . and to be honest, NOT having another AVR isn't an option for you (if you want to live, that is!) so there's not much point in thinking about it - get it done and get on the road to recovery!

Best of luck

 

[pellicle]

Hi

I have had 3 OHS, one as a valve repair and 2 as replacements.

Born with a bicuspid valve, at age 25 I had an AVR (porcine valve) in 1981 at NYH, William Gay, surgeon. Lasted till 1997, but just barely
...
In 1997, when I was 40, Dr. Douglas Murphy at St Joe's in Atlanta implanted a Carbomedics valve, and - there was a small peri-valvular leak from the get-go.

my history was a little simmilar, I had an OHS at 9 to do a 'valvotomy', then a homograft put in when I was 28 and then a mechanical put in at 48.

My surgeon was of the view (and I agree totally) that after 3 surgeries we don't want to be doing a 4th. TAVI is mainly for those who are so at much higher risk that they may die from regular OHS and still has the issues that they can't see to size the valve as well as they can on regular OHS. You may find this less "sell it up" view of TAVI interesting.

The reason for not wanting a 4th and then maybe a 5th is that the risk of death or just complications goes up with every reop. In my view a mechanical has lower risk of needing a reop as because all the tissue prosthetics have known life spans (and mechanical seem not to).

Of course, with a mechanical valve, I am not a candidate for the new cath procedures.

you may not be anyway ... mechanical is actually a good option if you ask me, and while some get anxious about being on warfarin the risks are in my view perhaps over-stated because they always include those who have other co-morbidities as complications and you just never see studies of only regular healthy OHS patients (we represent a minority on warfarin anyway).

I have put together my own thoughts on this matter on my blog here. Read that and then balance that against the other things you have heard.

Best wishes with the decision.

 

[charlottekaye]

I thank you both for your replies. I will definitely have another surgery if I need it, but - I would like more information on when to re-replace. Unfortunately, I am now of the opinion that I want to sort of look over my cardiologist's shoulder - I have had so many deaths and/or near misses
among my family due to delayed operations. I do not want to be in that situation again.