Now my brother needs OHS!

[njean]

About two months ago, my older brother, went to the doctor for his regular checkup. While there, they ran an EKG and found that he was having heart palpitations and scheduled him for an Echo. The doctor also detected a slight murmur. I have not seen the copy of the Echo but he was told that he had a mild/moderate leak of his Aortic valve and he would likely need to have OHS in the near future.

My brother says he remembers being told as a young man, that he had a murmur but he never gave it a second thought and went on to live a full, and normal life, kind of like me. I was told by my surgeon, that they thought I was born with a malformed mitral valve and then when I had the bout with rheumatic fever in my early 20's, that just blew everything out of proportion!

Upon hearing these shocking news, he decided to get a 2nd opinion with another cardio. This cardio performed another Echo and a TEE and the reports concurred with each other with only a few variances. And the TEE detected something even more shocking......he has a four-leaflet aortic valve!!! :eek2: I had never even heard of this but I guess it's not as uncommon as one might think!

My brother is asymptomatic right now and still can't phantom the thought that he will have to travel the road I've been on and know so well! Since he is 66 years old, they are recommending a mechanical valve. I have been talking to him and trying to reassure him that everything's going to be fine. He is still a very active, energetic, and vibrant man, who doesn't even look his age! I have very high hopes for him and know he's going to be okay.

So, the saga never ends.....I'll keep you posted!

 

[markp66]

Rubbish news but what an inspiration he has! If I had a sister who had a heart valve for 36 years then I'd be pretty confident. It doesn't sound like he will need surgery in the next year or so. Let's hope non-invasive surgery improves by the time he needs surgery. And I've never heard of 4 flaps!

 

[Cooker]

NJ ... sorry to hear about your brother ... maybe OHS is a ways out ... mechanical at 66? ... I would think he might get by with tissue ... please keep us posted....

 

[epstns]

njean,
While I am sorry to hear that your brother may need valve surgery, he must have a good working knowledge of what's ahead from you.

I, too, am surprised that they suggested mechanical at 66. Cleveland Clinic has been implanting tissue valves in the majority of their patients, even those in their 50's. I thought it used to be that mid-60's was the turning point, after which tissue valves were recommended. When I met with Dr. McCarthy for my initial consult, he told me that with the newer tissue valves, they are using them in much younger patients now - with expectations that they should do just fine for a long time. Of course, we all hope that by the time we need another replacement, they will be done via catheter. . .

 

[SB42]

Sorry to hear that, njean. He is quite lucky to have a hands-on resource like you...your experience and knowledge is priceless and you will be his comfort and he will overcome the fears and anxieties much more quickly than most of us, like you, that were the first to go through OHS. You know which site to send him to if he wants to open up - no pun intended.

Best of luck,

Scott

 

[Duffey]

Norma, I hate to hear your brother's diagnosis, but as the others have said, he has you to rely on. Hopefully he will be able to postpone surgery for another year or two. We had a member from North Carolina that has a 4 leaf aortic valve. I can't remember her name offhand, but when I do, I'll pass it along. Please extend my heartfelt best wishes to your brother and let him know he has an extended valve family ready and waiting at VR.

 

[drivetopless]

If 2 leaflets are bad and 3 are good, then 4 must be fantastic. Do they call is quad-cuspic? QAV?

Just kidding. I'm sorry to hear about your brother, but the scientist in me finds this very interesting.
I am glad he was diagnosed. Better to know than not know and suffer a dramatic complication. Keep up posted on how he is doing.

 

[nngbwh]

Sorry to hear about your brother. I hope everything works out for the best and keep your head up.

 

[Superbob]

Norma, I am sending my best wishes and fervent prayers for your brother. His pathway sounds somewhat similar to mine -- a doc detected my murmur in my 20s and I was 63 when the day came I needed surgery.

I never lobby for a particular valve choice, but I agree with Cooker and Steve that at age 66, the tissue option might be worth exploring for him. Tissue valves tend to last longer in we older folks than in the young. Just something to ask about -- his docs may have a reason for saying he should go with the mechanical. The best choice is very much an individual matter.

All best to him.

 

[Jkm7]

I'm sorry to hear your brother will need to walk the OHS path but he's lucky to have you to guide and assure him. You are surely an inspiration to him.

I wonder what his doctors are thinking to recommend a mechanical valve at age 66? I'd carefully question their reasoning.

 

[njean]

Thank you everyone for your kind words and thoughts.

And I too was taken aback when he said that the doctors recommended mechanical when I think a tissue valve would be the way to go considering his age. But he said that's the very reason they are leaning towards mechanical rather than tissue so that he will not have to undergo another OHS at a much older age? So go figure? He's the kind that doesn't even taken an aspirin and he dreads the thought of having to take anticoagulants but there again, I'm doing my best to reassure him with that aspect!

The last doctor even mentioned Dr. Cohen at St. Luke's in Houston, to do the surgery! Houston.....did someone say Houston???

 

[njean]

The last doctor even mentioned Dr. Cohen at St. Luke's in Houston, to do the surgery! Houston.....did someone say Houston???

And that's Dr. Cohn in Houston.

 

[dick0236]

Norma, sorry to hear of your brothers heart problem....but at least he has a very knowledgeable resource in you, to help get thru this. Your families experience seems to validate that many of our heart conditions are inherited. Both my mother and my only sibling(sister) died at age 69 with diagnosis of "heart attack" on death certificate . My own condition was first diagnosed as "scarlet fever" although doctors now say it may have been a bicuspid valve. Until I joined this forum I was not aware of the congenital issue of bicuspid valves. I have cautioned my two sons about their need to periodically make sure they, or their children, have not "inheritad" a heart problem. I hope everything works out for your brother.

 

[Bina]

Bummer news to hear about a heart defect, but when the time comes for his surgery, he will have one heckuva
good nurse in you, Norma. Send that good looking dude a hug from me.

 

[ElectLive]

And the TEE detected something even more shocking......he has a four-leaflet aortic valve!!! :eek2: I had %never even heard of this but I guess it's not as uncommon as one might think!

It appears to be pretty rare: http://ats.ctsnetjournals.org/cgi/content/full/72/2/628 and http://www.ncbi.nlm.nih.gov/pmc/articles/PMC548255/ with incidence rates anywhere from 0.01% to 0.008% but probably the most tangible reference point is that only 100-200 cases have ever been clinically documented in case reports. I guess a small bit of good news is that it was identified via TEE. In some cases, it's not found until surgery. Best wishes to you both and lucky for him to have your experience to rely on.

 

[Sarah_Louise]

Thinking of you and your family, especially your brother,
Love Sarah xxx

 

[Boston Tiger]

It's got to be quite a relief to your brother that he has seen how well a veteran like you have done over the years. Heck, my brother was an ICU nurse, and it was great when I was able to talk to him after surgery about some of my issues. Talking things through really helps, which is why I find this forum so valuable.

 

[bdryer]

Hi NJ

Wow shocker for your bro, yet what a score to to have a sis like you. You will make his experience with VR an interesting understandable journey.

One of the things you folks may not know about me, is that I have an identical twin brother. When I was diagnosed on Oct 14/11 with severe AS due to a bicuspid AV, I told my bro to get an appt with the cardiologist ASAP. His PCP understanding the urgency, got him an appt within 2 weeks. He came out clean. Thank God.

NJ, like others who have posted before me, I to question the MHV recommendation. From my research of last year, I found that a Bovine valve could take some one his age to his end days.

Best of luck to your brother.

 

[Bill B]

Thank you everyone for your kind words and thoughts.

And I too was taken aback when he said that the doctors recommended mechanical when I think a tissue valve would be the way to go considering his age. But he said that's the very reason they are leaning towards mechanical rather than tissue so that he will not have to undergo another OHS at a much older age? So go figure? He's the kind that doesn't even taken an aspirin and he dreads the thought of having to take anticoagulants but there again, I'm doing my best to reassure him with that aspect!

The last doctor even mentioned Dr. Cohen at St. Luke's in Houston, to do the surgery! Houston.....did someone say Houston???

Your brother's doctors must have read this paper.
http://billsworkshop.com/Some_AVR_lit/risk_corrected_analysis_of_bio_v_mech.pdf
Although the "traditional" break point is age 65, this analysis argues the MOST important thing is not age. Rather it is over all health. If you are otherwise healthy and have a long life expectancy, my surgeon told me and this analysis supported, you will probably do better over all with a mechanical valve. If you have co-morbid conditions, you will likely not outlive a tissue valve, so that would be the choice, again, regardless of age. That's an oversimplification, but the takeaway for me is that over all health needs to be weighted heavily.

 

[carolinemc]

I am sorry about learning about your brother, but mechanical valve is not so bad. You have been here long enough that there has been better mechanical aortic valve replacements in the last few years. Even though mine, St. Judes aortic valve replacement is still pretty common, there are others out there just a good or better. When he does have surgery, he will feel better, the murmur will be gone till there is a major problem. Having a wait till a future time, things get better later. Just keep him busy as usual, he will be fine. Just let us know when he does have to go for it. Hugs for today.