Question

[heather]

If you have secondary pulmonary hypertention due to your HCM, would that make you not a good candidate for a transplant? This was the reason my dad was told he could not have one back in the late 80's, but I was thinking if it's your heart that is causing the high pressures in your lungs, wouldn't a new heart fix the high pressures? My cousin who had a transplant in the early 80's, lived w/ her new heart for 20 yrs. She was the first heart transplant in the Albuquerque, NM area. I'm sure she had the high pressures in her lungs too. Just wondering. I'm full of questions tonight!

[EmilysDad]

Over time, the high pressures in the lungs cause the pulmonary artery and vein to remodel, to become thick and restrictive. This makes the outcome of a transplant less favorable.

[Pam Alexson]

Additionally.. it would make not just a heart transplant necessary but additionally a lung transplant. I am not sure how that is viewed in priority of candidacy for transplantation. Therefore, a heart transplant will not fix the damage to the lungs.

As I have secondary pulmonary hypertension from the increased pressures and have readings of 55 mmhg ( last cath 2006). It has been one of my concerns as well... so I do everything I can do to make sure my doctor is helping me keep my heart as relaxed as possible. My hope is I will not progress further and also the heart failure will not increase and this will not ever be something I will have to confront.
I think for those of us with this entity of our HCM disease in which stiffness is pretty over the top it is VERY important to NOT push ourselves to levels in which the heart is working so hard that it causes further damage of the pulmonary vessels from constant increased pressures. That is what I have learned about my variety of HCM and often am VERY concerned when I read of individuals pushing their HCM hearts.. Learning all we can about our unique character of HCM with the guidance of an HCM specialist is EXTREMELY important as it appears for our longevity. For some as.. your relatives Heather, the damage and progression may be something we are not able to stop.. Your cousin did well to have her heart for 20 years .. the average I believe or rather predicted is 10 years.

We can only be optimistic about what is the right thing to do and I am very hopeful for all of us who have these issues.

Pam

[Midge Rollins]

When being evaluated for a transplant the pulmonary hypertension is closely looked at. Then every 6 months they do a R.sided cath to meaure the pressures. As far as longevity after a transplant who knows. I focus on the 4 1/2 years I have had not what is expected. I have met people 15-22 years post transplant and they are doing well. Usually, it is not the heart that gets us but something else caused by the low immune system. Pam, is right though when your disease is more profound it is not a wise decision to push that heart just to say look I can still do this. We have to be moderate in all we do.