Poll on causes of member's valve problems

[Diesel]

Gina: My valve decision

Gina: My valve decision

Gina:

Wow, i thought i was the only one here with this heart disease. I have mitral stenosis, and a parashutting valve (sp??) I am trying to figure out which kind of valve to replace it with.

AT 28, had you had any children? may i ask , do you have any now?? i was told that i shouldnt/couldnt have children after i replace my valve due to cumadin medication.. I thought i was okay with it. But at 25, i am still sigle and children are not in my imeadate future. But i dont know if im ready to say, I never want to give up having birth..

I do need this surgery to feel better, and i can't put this off any longer. And i understand that. But i just would like to know how to make the decision.. and HOW to make the decsion that is best for me for which valve to have in.

My doctor is amazing, but wants me to choose which valve i would like. That way ihave a say in my surgery...

Diesel

 

[geebee]

Diesel,

I answered in the thread you started.

 

[bvdr]

Hi Diesel,

The #1 cause of mitral stenosis in the adult is rheumatic heart disease and yes, there are quite a few of us here on the board who have or have had it, including me.

 

[KenKeith]

I have always said CHD as being 'congenital heart DEFECT' not disease and I know a lot of other parents of CHD children who hate the term 'disease' being used about their children. by Emma

I agree "disease" connotes to many something (almost an anti-social malaise), but I prefer the word "disorder" rather than "defect". Defect means something that is missing and disorder means something not functioning properly. The heart isn't missing; it is not working properly.

 

[pillarpaul]

Other explained

Other explained

Interesting question, Betty. I voted "Other" so I'll comment. A couple weeks after my surgery I asked the surgeon what it looked like in there once he got in (we could never quite tell exactly from the echos). He said I had a small hole in the aortic valve which was probably congenital. However, there was also a long rip from the hole downward which he very reluctanlty admitted was probabaly caused by an angioplasty I had abut five years previous (different hospital and cardio). My murmur was detected the day after my angioplasty. It was highly unlikely that placing the tubing in the artery could have caused the hole but it was more likely it exacerbated it (thus the tear) and I probably wouldn't have ever needed surgery without the tear.

Paul

 

[KimC]

Paul,

Wow. What an amazing story.

Ken, it's reassuring to hear that heart remodeling can be reversed with meds and time.

Thanks for initiating the poll, Betty. We should do more of them!

Best,

 

[Debbrn]

I was born with TOF. Part of TOF is pulmonary stenosis. When I was 6 my pulmonary valve was removed and I lived 19 years without a pulmonary valve. At the age of 25 I had a cadaver aortic valve placed in my pulmonic space. That was 14 years ago. So I voted congenital.

Debbie

 

[ericaj]

syndrome/disorder

syndrome/disorder

I have to post one more comment. Keep in mind that a defect is something that is amiss or missing.. another thought is that for many of us (or maybe only a few) we have disorders that are calledlabeled as syndromes (my case Scheie Syndrome) which is a cluster of diseases caused by a single known cause - in Scheie syndrome this is the missing or deficent enzyme Alpha-L-Iduronodase... thus the overall name is mucopolysaccharidoses 1 scheie syndrome....

And in cases of connective tissue the same general thought applies....
just another 2cents worth.

Erica

 

[Johnny Stephens]

Radiation Treatment

Radiation Treatment

Late effect of radiation treatments for Hodgkin's disease; valve problems diagnosed 22 years after the irradiation.

 

[Heather Fisher]

Congenital aortic valve inherited from dear old dad.....
2 heart surgeries, coartation and Ross procedure for me. Still alive and kicking...

Heather

 

[ShezaGirlie]

Great question Betty and great thread!


Bicuspid Aortic Valve which my Cardiologist said was congenital.

My Mother will be 90 this year and takes no heart medication and my Dad died at 84 without ever taking heart meds either, so where did this come from?

 

[Granbonny]

I posted

I posted

But no valve disease...I think that Ross, Creed (Gail) and I are the only ones who had Valvereplacement due to an aneurysm . Are we 3 lucky people Where mine came from..Never will know. Dad is age 90 and going strong. Rest of my family are healthy... I was a healthy age 62 year old...then, I got lucky.... PCP was concerned enough to send me to a Cardio...Mentioned something about b/p...after a Cath of heart..there it was....A big 5..something..3 days later...VR...surgery..Thank you Lord.. Brother-in-law died from same thing at age 50..My age too.Dissection....Lived 24 hours .........I never had any idea anything was wrong with me... But, here I am now, 3 years later.. Doing great. Bonnie

 

[Georgia]

I was diagnosed with MVP at age 29; subsequent mid-sternum radiation for breast cancer AND Phen-fen (for 6 mos.) make me suspicious, but surgeon said it was not a phen-fen valve. But another vote for what appears to be possible multiple causation.

I've found it's interesting how many folks have family with MVP's - can't find anyone in mine who might or might have had one. Both my daughters have had echoes and the valves are fine (thank God).

Thanks, Betty - really interesting.

 

[Mb]

rheumatic vs. non-rheumatic

rheumatic vs. non-rheumatic

I am just curious here, and hope someone knows the answer.

When reading up about valve disease, a-fib, etc., and trials are done, they often exclude people whose heart disease is rheumatic in origin.

Does anyone know why? Are the results so different?

Marybeth

 

[karlaosh]

Kenton Zehr, who recently reviewed my films, told me that he thinks my valve is actually monocuspid (or unicuspid), and that people with monocuspid valves vs. bicuspid valves tend to deteriorate more quickly and require valve replacement in their 30s and 40s instead of in their 50s and 60s.

Karla

 

[Harpoon]

I am just curious here, and hope someone knows the answer.

When reading up about valve disease, a-fib, etc., and trials are done, they often exclude people whose heart disease is rheumatic in origin.

Does anyone know why? Are the results so different?

Marybeth

I would surmise that it's because the disease affects multiple areas of the heart, not just the valves, and that could skew results on how effective one valve type is over another...

Most research seems to be centered around adults with acquired heart valve problems. Rheumatic fever is generally something one gets as a child and it leads to other issues in how the heart and body develop (or recover.)

Generally studies on valve issues in regards to rheumatic fever are probably limited to those who have it, if there are such studies.

I've seen studies on patients with transposition who develope valve problems and it's more about the fact that they do, than which valve (or procedure) is best for replacement (repair.) Seems like most people with transposition of the great vessels are destined either for a valve job or heart transplant (if they don't die first) so the focus is more on how and why native valves fail rather than which way is best to deal with said failing valve. Treating the cause, rather than the symptoms.

In acquired valve disease (those affecting generally older adults with no prior history of congenital heart disease) the focus is more on treating the symptom, the bad valve, rather than the cause because there are multiple causes for the same problem, some genetic, some environmental, some chemical/radiological....


I suspect that's where the differences are.

 

[Bunny_Rabbit]

It was that stinkin' Strep Throat that caused the Rheumatic Fever.

Sheesh, I guess you really have to finish ALL of your medication when it's prescribed.

 

[Barry]

Hmmm. While I voted Congenital Heart Disease, I just noticed that there's a separate category for Mitral Valve Prolapse. What about congenital mitral valve prolapse? That's what did it for me.

Regarding disease v. defect: I can't say I find much comfort in considering myself defective rather than diseased!

 

[KenKeith]

Hmmm. While I voted Congenital Heart Disease, I just noticed that there's a separate category for Mitral Valve Prolapse. What about congenital mitral valve prolapse? That's what did it for me.

Regarding disease v. defect: I can't say I find much comfort in considering myself defective rather than diseased!

Children can be cruel by teasing other children, and "disease" or "defect" can be problematic with the child's relationships and their self-esteem. I can understand a parent's wish to shelter their children from teasing or rude remarks. I believe the original poster had that in mind. A "disorder" seems to me less innocuous in tone and more understanding to a child.

Also some adults may have some pre-conceived misinformation and misunderstanding as well.

Wouldn't congentital MVP be CHD? CHD covers a wide spectrum of all heart ailments and deformities from birth.

 

[Phyllis Jean]

Bicuspid Aortic Valve

Bicuspid Aortic Valve

When I Was Born 62 Years Ago, I Was Not Breathing And Was What They Called A "blue Baby". After Working With Me For A While, I Finally Got My Breath. During My Growing Up Years, I Got Tired Very Easily. I Found Out I Had A Heart Murmer When I Was About 30 Years Old. When I Was 55 I Had My Aortic Valve Replaced. My Surgeon Said It Was Congenital. I Wish I Had Known This Earlier As I Didn't Know To Take Antibiotics Before Dental Work.