Member Comments are provided by individuals and reflect their personal opinions only. Under NO circumstances should you act on any advice or opinion posted in this forum. ALWAYS check with your personal physician before taking any action regarding your health! MedHelp International and our partners, sponsors and affiliates have no obligation to monitor any comments posted on this site, or the content and/or accuracy of such exchanges. MedHelp International does not endorse the views of any user.
Heart Disease (Expert Forum)
16 yr old son just transplanted, 18 yr old diagnosed with Cardiomyopathy
This forum is for questions and support regarding heart issues such as: Angina, Angioplasty, Arrhythmia, Bypass Surgery, Cardiomyopathy, Coronary Artery Disease, Defibrillator, Heart Attack, Heart Disease, High Blood Pressure, Mitral Valve, Pacemaker, PAD, Stenosis, Stress Tests
16 yr old son just transplanted, 18 yr old diagnosed with Cardiomyopathy
by Arizona Cheesehead, Sep 24, 2006 12:00AM
Hello; my 16 yr old son became ill a few months back and almost passed away. To make a long story short dilated cardiomyopathy, never showed any signs or symptoms until he almost died. Both sides of heart failed so 2 VADS installed, lung, kidney and liver failure also. Was transplanted at Mayo Scottsdale 4 months ago and doing great. Now myself (father) and other 3 sons 18,9 and 4 months were checked out by cardiologists and my 18 yr old son came back diagnosed with cardiomyopathy with an E/F around 40. He just like the 16 yr old doesnt show any signs or symptoms was very active playing drums and skateboarding but now I am at a total loss for words and a nervous wreck just waiting for him to have to go thru same ordeal as the 16 yr old. He is currently taking Lisinopril,Spirolonactone and Coreg and says that he feels just fine and no advers reactions from meds. I am remarried and the 18 and 16 yr old are from same mother and and 4 months old from current wife. Older 2 kids mother hasnt been checked yet cause she has no insurance.If there mother comes back tested and showing no signs of cardiomyopathy then I hope that genetic testing can be done to try and find the cause, biopsy of 16 yr old came back negative for any viral or bacterial infections. The team at the Mayo says there is a chance we may never know root cause.Alos just like to state after seeing my son code blue 5 times and watching his team of doctors fight like hell and not giving up on him I have a new found respect not only for life but for the medical profession. 16 yr old is back in school and doing great !
Doctor's Answer
by CCF-M.D.-MJM, Sep 24, 2006 12:00AM
Hello Cheesehead,
There are some names on this forum that make me laugh and this is one them. First, I am very glad to hear that your son is doing well. We see cases like this quite often and as tragic as they are, they can be some of the most rewarding in our profession.
Your doctors correctly informed you that the majority of non ischemic cardiomyapthies are difficult to put an exact diagnosis. There are known genetic causes but these are in the minority. As you have already figured out, the fact that your other son has a low ejection fraction suggests that it could be genetic. The problem is that genetics is very complicated. There are some genes that if you have the gene, you have the condition and others that have the gene and either does not develop the condition or only minor effects from the condition. Even viral causes may relate to how you immune system responds to a viral infection and again, this has genetic roots as well. Even if your children’s mother has normal heart function, it is still possible that the gene came from either of you. I think all transplant centers have genetic counselors. I suggest that you sit down with a genetic counselor to discuss risks and also to make sure that you understand that is no ones fault.
Regarding your son with the lowish ejection fraction -- cases like this can stabilize, improve or worsen. It is important that he has long term cardiology follow as directed by his doctor. I know you are going to worry no matter what I tell you, but don't forget to live your life and focus on what is happening rather than what might happen. We all spend a lot of time worrying about things that never happen, try not to let it consume you.
Regarding your son with the transplant -- make sure he understands that even though he feels well, he MUST take the medications. It is not uncommon for teenage transplant patients to stop their medications because they feel well.
I hope this answers your questions. Good luck and thanks for posting.
There are some names on this forum that make me laugh and this is one them. First, I am very glad to hear that your son is doing well. We see cases like this quite often and as tragic as they are, they can be some of the most rewarding in our profession.
Your doctors correctly informed you that the majority of non ischemic cardiomyapthies are difficult to put an exact diagnosis. There are known genetic causes but these are in the minority. As you have already figured out, the fact that your other son has a low ejection fraction suggests that it could be genetic. The problem is that genetics is very complicated. There are some genes that if you have the gene, you have the condition and others that have the gene and either does not develop the condition or only minor effects from the condition. Even viral causes may relate to how you immune system responds to a viral infection and again, this has genetic roots as well. Even if your children’s mother has normal heart function, it is still possible that the gene came from either of you. I think all transplant centers have genetic counselors. I suggest that you sit down with a genetic counselor to discuss risks and also to make sure that you understand that is no ones fault.
Regarding your son with the lowish ejection fraction -- cases like this can stabilize, improve or worsen. It is important that he has long term cardiology follow as directed by his doctor. I know you are going to worry no matter what I tell you, but don't forget to live your life and focus on what is happening rather than what might happen. We all spend a lot of time worrying about things that never happen, try not to let it consume you.
Regarding your son with the transplant -- make sure he understands that even though he feels well, he MUST take the medications. It is not uncommon for teenage transplant patients to stop their medications because they feel well.
I hope this answers your questions. Good luck and thanks for posting.
Kitcurious, we dont know the cause of the cardiomyopathy just yet. So far they have found nothing genetic or viral but will no more once their mother gets tested. If mother checks out ok then they will do some special genetic testing, what it is I have no idea.
Collegegirl myself and all 3 of boys 18,9 and 4 months have been checked out by 3 different cardiology teams and they all have come back with exact same results. They all seem to think it will show to be genetic but wont know more until mother gets checked out and then they say it could have been from me but I dunno how all them tests will turn out. We would just like to know the cause and if the younger 2 boys will be prone to this happening to them.
We were so lucky that Mayo in Scottsdale had just started to perform transplants or he would have been flown to Tuscon or UCLA and may have not made it thru the trip.
We have some great doctors in Arizona !!!
We are hoping that some root cause is found, the fact of not knowing the cause is horrible but I do realize we may never know. My 18 yr old is being treated by both the Mayo team and also the cardiologist who diagnosed him. It is nice to see them work together something I dint know would work.
My 16 yr old is doing very good managing his meds. He takes them at 7am and also at 7pm and basically does it all himself including checking his weight,temperature,blood pressure and blood sugar. Of caorse he has his father, step-mother and mother watching him like a hawk. I am very proud of the way he is handling this, way better than his father so I think he will do as good as can be expected.
Thanks for your time and replay.
Anacyde thanks for your comments also. You are so right we have a second chance at life and it will not be wasted !!
I just wanted to let you know that although your sons have a dialated cardiomyopathy and its different to what I have been through the past 9 mths (I was dx with a post partum cardiomyopathy Dec 23 05) I have taken my meds religiously and now my EF is up to 60% which is basically normal. I was at 45% when they caught it and it was probably waay worse than that EF during my third trimester (hx tells all involved that I had had it for at least 3 mths and the OB did not pick it up). When I finally remembered to mention my tachycardia and edema to my PCP, bless him, he picked it up immediately. I had put down my symptoms to post partum stuff.
I also had horrible liver numbers (in the thousands) and my kidneys were starting to go when they hospitalised me, then my lungs went south - functioning at less than 50% of normal. So I can understand your worries as a Dad ( we have three young kids) and a little of what your sons went through being dx.
I hope things continue to go well and your boys do just great. Teenage years are hard enough for parents without health worries added to the mix.
Hang in there.
Fiona