31 year old mechanical AHV

[kcstock]

The cardiologist has told me the valve I have will not last my life. I am 52 years old and still very active. I have been on coumadin for 31 years and this is the first time the cardiologist has suggested a new valve. The window on when to do it is still unclear. I'm wondering if anyone out there is about my age and also has a 31 year old valve which is starting to show signs of calcification. I'm trying to gather information on the risks of a second surgery and an idea of pro's and con's of waiting.
thanks

 

[njean]

The cardiologist has told me the valve I have will not last my life. I am 52 years old and still very active. I have been on coumadin for 31 years and this is the first time the cardiologist has suggested a new valve. The window on when to do it is still unclear. I'm wondering if anyone out there is about my age and also has a 31 year old valve which is starting to show signs of calcification. I'm trying to gather information on the risks of a second surgery and an idea of pro's and con's of waiting.
thanks

Dear KC,

I will tell you a little bit about my story:

I am 57 years old & I had two mechanical valves (aortic & mitral) implanted in 1975 when I was 24 years old. I have been on coumadin for 33 years & I lived a perfectly active & normal life for 31 of these years without any real restrictions on what I did accept the restrictions I may have placed on myself & which weren't many!

In between those 33 years, I also underwent a hysterectomy in 1997 & a knee surgery to repair a torn MCL in 2004 that I suffered when I fell off my ATV!

Since the beginning of 2005 I began to notice signs of CHF which I instantly recognizied only too well. (Throughout the years I had been monitored by a wonderful cardiologist since I was 21 yrs old & I came down w/rheumatic fever (1972) which was the cause of all my heart problems. But unfortunately my long time cardio RETIRED in 2000 & I struggled to find a good cardiologist.) During this time, the signs were being missed or ignored by these stupid doctors!!

Finally & by the grace of God, I went to the cardio I have now & after undergoing ECHOS, Angio's, etc., it was determined that my old 31-yr old Aortic valve was showing extreme signs of pressure & it needed to be re-replaced with a new valve. I was flown to Houston & had the surgery at St. Luke's. The put in a brand new St. Jude's valve in it's place which is working wonderfully! The 31 yr old mitral valve was left as is because it appeared to be working okay, but that is another story right now.

So since you say that your cardio is recommending that you need a new valve, go for it! This will be your 2nd OHS; I have had 3 OHS & a 4th one is still a possibility! You need to inquire around & choose a surgeon that specializes in re-ops & I know of at least 3 that do that are in Cleveland; in fact, if I have to go under the knife again, that's where I'll be heading!

You are very young still & the odds are in your favor. Go for it my friend!

I wish you all the luck in the world & I will have you in my prayers. Please continue giving us an update on your situation! Take care!

 

[geebee]

Welcome,

If you do need it replaced, you are still young so the risks should be minimal for a second OHS. However, I would sure be asking some serious questions as to why he feels it needs replacing. You mentioned an active lifestyle - does that mean you do not have any symptoms? Was the replacement suggestion done as a result of problems or just in the course of regular checkups?

Would love a little more information about your situation.

 

[kcstock]

31 year old mechanical AHV

I have been getting regular check ups annually. The echo was the issue. I don't have all of the numbers, but my gradient? was 75% which was up from the 60's range for the past 4 years. 8 years ago it was 29%. I had an ETT and that looked ok. The heart is strong and hasn't enlarged. Symptoms...yes some tightness in the chest, minor dizziness at times. Honestly, I thought I was just getting old. The cardiologist has said that the symptoms will guide his decision, rather than a reading of 75%.(I'm paraphrasing here) so...there is a little more info.
thanks

 

[catwoman]

What type of valve do you have now (position, manufacturer)?
Not sure what an ETT is, but have you had a TEE or other diagnostic tests other than a regular echo?

 

[Jkm7]

Hi and Welcome.

While the prospect of a second OHS is a nightmare ( I know as I just had my second in four years about 4 1/2 months ago).... the added risk because it is a second is negligible to a top notch surgeon. It didn't phase my surgeon who had also done my first.

Sooner rather than later is always the best in terms of preventing premanent damage to your heart.

Use the time now to find the surgeon who is right for you and prepare for a second surgery. If your cardio is right, there isn't much to be gained by waiting.

You won't get younger, you probably won't get stronger and you may actually develop other conditons in the meantime that could complicate the issue.

Happy you found us but sorry for the reason.

 

[Arlyss]

Hi Kcstock,

We also watched my husband's mechanical valve because of increased pressure gradient - no other problems with his heart, no obvious symptoms, etc.

Pannus is scar tissue that forms around the valve opening, and we understood that because of this in his case, the mechanical valve would need to come out at some point.

However, he had just had aneurysm surgery in 2001, and there were no indicators of anything that would force surgery immediately. It seemed safe to give it a little time, watching carefully.

In spite of careful monitoring, one day in the fall of 2005 he suffered a massive right brain injury. I returned home to find him on the floor, completely helpless.

No one knows when they appeared on the scene, but fine hairlike strands of tissue had formed on the intake side of the valve and were floating in the blood stream. Some of them broke off and went to his brain. It could have taken his life, or disabled him even more than it has.

I do not want this to happen to anyone else.

Here is a paper that was published after this happened to him. It covers all the known problems that can happen with prosthetic valves - including pannus and strands, which he had.

http://bicuspidfoundation.com/Evaluation_of_Prosthetic_Heart_Valves_Van_den_Brink.pdf

I encourage you to share this with your physicians. If they are not open to this information, if this were my body or my husband's, we would keep looking until we found someone who was - someone who would leave no stone unturned in understanding what is happening.

We cannot go back to those days in 2005 and proactively take out that valve in time to avoid what happened. Sharing this, I hope it will help you and anyone else who reads it. Since my husband, I know of four others who had their prosthetic valves removed because of strands. Three of them had strokes before it was realized there was a problem.

I don't want to frighten you - I just hope it will help you be checked thoroughly.

Best wishes,
Arlyss