HCM Diagnose Time to Heart Transplant Time

[Grecoeuro]

Hello I have been recently diagnosed with HCM at 26 I can think back to as far as when i was 17 being short of breath during sports. So i guess its progressed for about 9 years. My septum is now 31 mm thick.

Just wondering how soon after do most people need a transplant? How do you know you need a transplant? And how bad do symptoms get before you need one?

I know all people aren't the same but i was wondering if some people could share their experience and hope.

Thanks

T

[Cynaburst]

Most HCMers will never require a heart transplant. That is pretty unusual, occuring only in about 1% of patients, I think. Those that require a transplant don't follow any particular course that is predictable. And you wouldn't get a transplant until everything else has failed....a myectomy if you are obstructed, all drug therapy, etc. Also, not only would you have to have bad symptoms, but you would also have to meet other criteria, as Shirley would attest...your heart has to be not working to send oxygen around your body.

[Toogoofy317]

Well,
I guess I'm that 1% who eventually go on to needing a transplant. I'm 25 as of yesterday. I was diagnosed at 21 before that point I just couldn't really run fast didn't know why until now.

For some reason my condition declined rather rapidly. I have tried every medication known to man and some I think that really weren't known at all!

As I've mentioned before. I am not like anybody else and I have another problem that affect how my heart is functioning as well. There is no way to tell what this disease is going to do!

mary S.

[karen cicconetti]

Hi I'm Karen I'm one of the small percent who needed a transplant. One of the most important things I wanted everyone to know is I was diagnosed at 29 years old, three months after my dd had died from it. I was never treated!!! Even though I went to the doctors every six months, all he ever sad is you are going to need a transplant someday but for now lets just watch it. Well he watched it get worse and worse till I was taken by ambulance to the hospital and was transferred to N.Y. that was when I was 33. The doctors had said that had I been treated I may not have ever needed a transplant, or at least not then. Transplant is the last resort if medication,other surgeries don't work then and only then will they even consider transplant. Even while on the waiting list they tried different meds to see if they would help and freeze my spot on the list but nothing worked. I waited 18 months. And when I needed to wait in the hospital (that's what they did 7 years ago, now you can wait longer at home) I only waited 8 days. I hope that helps someone. Feel free to ask me anything else.

Karen

[Midge Rollins]

I think it is about 3-4 % that end up needing transplants. As previous stated this is not something that they just do. All other options are tried first. In my case I was diagnosed at 28 and had a myectomy at 35 with a transplant at 57. Most people live long full lives with HCM with some modifications in activity. Please don't think that a HCM diagnosis is also going to mean a heart transplant. That happens in only the minority of us.

[Lisa Salberg]

The current understanding is that about 2-3% of those with HCM need a transplant at some point. However there may be a great number of people who do not present with HCM and are only diagnosed with "dilated cardiomopathy" that move on to transplant thus the actual number of people with TRUE HCM that require a transplant may be higher then we know.

Generally those with HCM live long normal lives with minimal intervention.

Lisa

[Grecoeuro]

Thanks for the information! Much appreciated.

My mother passed away at the age of 29 in 1983. Her septum and left ventricle grew to 2X the normal size and ended up having heart failure.

At my ICD Consultation the Dr. told me that I might end up having a similar case and that's usually what happens. I had a Cardiac Cauterization done and showed no obstruction. What happened when you get a ICD and it goes off frequently? A transplant is still not recommended?

I am saying what would have been my mothers other option and will I go through the same? What are my options in current times?

I do have hope and am thinking positive!!!

[Reenie]

Statistics show that although there are some families who do have more incidence of sudden death, that each case is individual and you can't say that your case will closely follow your mother's with any great accuracy. If your mother died of heart failure and not sudden death due to arrhythmia, an ICD wouldn't have helped that. At this point I think you really need to be seen by a specialist and have them evaluate you (along with your family history) to see what the best course of action is for you.

Reenie

[Pam Alexson]

However, in saying that ... a pacer could have helped if she was in heart failure. It is too bad that she did not have the oportunity to find out. The Ep 's can do various things with pacers that can help end stage heart failure patients. My doctor has already discussed these plans with me if my heart goes down that road.

Pam

[progers]

I understand that there is no real way to know who will progress to 'end stage', but what are the early signs (other than the obvious dilation of the heart)? Karen, why did your cadiologist predict that 'some day you would need a transplant'?

Is family history important? Are people with larger hypertrophy more prone to go to 'end stage'? Or is end stage more common in those who have no obstruction?

I've always wondered about these questions. Maybe those who have experienced end stage could tell us about their experience?

Paul

[Reenie]

Those are great questions but I don't have any answers. I know they do look at family history but HCM is too individual to know predict how a particular case will turn out. For instance, my husband's grandma had a septal measurement of 1.8 cm, his mom doesn't show any thickening at all, yet his is 3.8 cm. There isn't always consistency in how HCM expresses itself among family members.

Reenie

[karen cicconetti]

I never under stood why they told me I would need a transplant. They never tried anything else. ( I made a mistake I was 9 not 29 when I was diagnosed).
From what they can tell from my fathers history mine was the same non-obstructed HCM, my sons is obstructed. My heart actually weakened faster then it thickened, maybe because it was never treated. But unfortunately I'll never know. Their is always one thing I always tell my son when my father had it they didn't even know he had it so nothing could be done for me medication was just al ittle to late but I was able to have a transplant, for him medicine changes every day and with the help of his forum and education he may never need anymore then what he already has. And if he ever does we have a large netwok to help us.

Karen

[shirleymahoney]

Like you Karen i have had this as a child according to what doctors have told me being all the symptoms i gave them like passing out getting very lightheaded before i did and this was happening from the time i was in a crib til i was 5 or 6 years old and i passed out a couple of times as a teenager and like you i was never medicated until 2 and a half years ago but now my heart is very stiff just picking up after my family today my hair is soaked and it has worn me out, so they don't think the meds are going work and the only thing left is a transplant being i have had surgery and the stiffness is still there, i hope everyone is well this fine day

Shirley

[karen cicconetti]

AS for end stage HCM,I think I was there for many years But just wouldn't admit it looking back I know I was in heart failure for at least 2 tears before the doctors told me, I would walk to work and have to sit for a few minutes just to continue. The funny thing is I worked in hospital for 15 years (I scheduled patients for Pre-admission testing and would notify doctors if their might be a problem. But no matter had many doctors I told, I couldn't lay down,SOB, they all said the same thing a cold, allergy's who knows. And they all knew I had HCM I told them. It wasn't until a friend of mine who was a doctor ( he was a gastroenterologist)who said Karen theirs something more wrong with you then what their saying I can see it. Within a week I was in A-fib and the process began. That was in 1996 was transplanted in 1998.
Karen

[Midge Rollins]

There is no way in predicting "end stage" HCM. I had the genetic testing results in March and they can only tell if you carry the gene not if, when or to what degree your HCM will be. My father like Karen heart weakened more than it thickened. Unfortunately transplants were not available back then (77) I was told about one year before I was officially placed on the list that I would most likely need a transplant they did not know how soon. They continued with medicine therapy right up to the transplant.

[shirleymahoney]

Midge is right
There is no way of knowing if someone will get to the end stage of this disease , I have stage 3-4 HF but i could stay this way for the rest of my life or i could get worse, my father is 88 and he is still living with it but never knew he had it until a couple of months ago, we all figured he did being we had it and we know my moms heart was very healthy and she died from cancer of the lungs and my brother that died was my half brother we share the same father, i hope this answers some questions for you

Shirley

[Toogoofy317]

I'm still not sure what the logistics are as to why I'm getting assesd to go on the list. I do know I have no quality of life right now. I just spent 15 minutes outside taking pics of my car and was drenched in sweat and had chest pain. But, it was odd that Maron mentioned heart transplant the very first time I saw him. But, as of right now I'm paced 100% and now my EF is at 50. Just two years ago it was in the 80's. Also, my septum has not grown and I'm non obsturcted so I don't know if my heart is just getting stiff or what? But, I know I can't even do my sit down secretary position anymore. Something has got to change!

Mary S.

[Grecoeuro]

Wow what great information,

Thank you all. You are all so strong.. it is inspiring. I wish you all the best. I will ask my cardiologist to see a specialist and I will keep in touch if I have any other questions. You are all so helpful.


Theo