16 yr old son just transplanted, 18 yr old diagnosed with Cardiomyopathy

[Arizona Cheesehead]

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 !

[CCF-M.D.-MJM]

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.

[Arizona Cheesehead]

Thanks for the kind words from everyone. It has been a tramatic experience but hopefully things can smooth out now.

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 !!!

[kitcurious]

I am sorry to hear about the ordeal you have gone through, so suddenly and unexpectedly. I am happy to hear that your son is doing well now and hope that the medication can keep your older child in good standing. May I ask you if you know if the genes related to the inherited form of the disease are autosomal dominant ?

[CollegeGirl143]

that is absolutely horrible!.. i cant even imagine what that must feel like.. At least your kids are being looked after at a great clinic.. but just incase, if you ever want a second opinion, i too live in AZ.. and im a patient at biltmore cardiology in tempe.. they have a huge team of cardiolgists, ep's, and all kinds of specialists. they are AMAZING.. If u ever want a second opionion they do amazing work.

[calico1]

Seeing your son go through that hell of multiple organ failure is devastating enough and now you have an older son whom we hope won't have to be in any worse case than where he's at now. You're still lucky that medical and technological remedies are accessible, they are still young and their body and spirit are still robust to sustain  such kind of trial.  Good luck to your family. Someone up there is watching over us.

[anacyde]

I just wanted to send my best wishes both for the continued success of your son's post-transplant health, and also that your older son's condition was caught in a timely manner so that the medication can prevent him from having to go through transplant as well.  Information is on your side now, and that's 100% more that your older son has than his younger brother before his traumatic experience.  Hang in there!  Your family has a second chance at life together now, enjoy every minute.

[Arizona Cheesehead]

CCF-M.D.-MJM, thanks for the reply.

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 !!

[Fionajnz]

Hi, am glad to read that your sons are doing so well, esp your son who was recently transplated.

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

[LaRae]

Hello there. Glad to hear a success story such as your son's. Your other son is very lucky you got him checked out as soon as you did. Good going. I've been told not all relatives follow up as suggested. I too am a first degree relative of dilated cardiomyopathy. My father was diagnosed with end stage (heart failure)DCM at age 44 and died at age 47. My brother was diagnosed at age 33, received a heart transplant at 35. He died from an unrelated cause at age 41. My brother was informed it is most likely familial (caused by a gene)and that his child and siblings should get echoes every 3 to 5 years. I went for my second echo screening in 4 years and found my EF has reduced from 60% to 45% or so. My ventricals are of normal size, but there is concern about my reduced EF. My cardiologist sent me for a MUGA scan to get an accurate EF and a better look at things just to be sure before jumping to conclusions with a diagnosis. I am still awaiting those results. My main concern is learning whether or not I could have passed a gene on to my two kids. They are now 15 and 16. Also my brother was survived by a child now 13. I am very interested in the genetics where FDC is concerned. I've read that any child of a DCM patient has a 50% chance of having the gene (although even so it may or may not manifest). I've tried to research my family history but it's difficult. I don't think my dad or his parents had a clue. That's OK though- no one can be at fault. I wanted to tell you about Jons Hopkins cardiomyopathy association. They have a website. You can also call there. They screen relatives at their clinic and offer genetic counceling. They are a great resource if nothing else. One thing I've learned is that aparently the tests for the genes identified are not perfected yet. It was explained to me that even if a person is diagnosed with familial dilated cardiomyopathy there is only about a 20% chance it will show up with the test now aailable simply because the test itself is still in the works and not 100% perfected. But I was also told they are getting more and more accurate with it as time goes on and I am persuing this idea. Anyway, wanted to let you know about that resource (Jons Hopkins). Wishing your sons and your family the best and hope all's well. Take care. P.S. Isn't amazing to see a family member get a second chance with a transplant? What a gift! Please do make sure your son is aware of how critical it is to faithfully take his anti-rejection meds as instructed by his doctor.