[Brother With Cardiomyopathy]

Author: richardjst (---.machlink.com)

Date: 12-17-02 17:25

My brother was diagnosed with Idiopathic hypertrophic cardiomyopathy when he was three, his whole life he had not been able to do anything that he really wanted. He could have felt sorry for himself but that was thing that he ever did. When he was in 7th grade he had to have a pacemaker put in. Just recently he was diagnosed with congestive heart failure and put on 30-40 lbs of edema. He was admitted into the hospital they performed his 5th catherization, removed 1/2 liter of fluid from around the heart, and implanted a defibrillator. They found out that he had a lot of pulmonary edema and is not a candidate for just a heart transplant but needs a heart and lung. How unfair is life for my brother at 17 years old has to make the decision to either go home and die or try to prolong the inevitable. But, my brother being the way he is said well, I've lived 17 years some people don't get to live that long. What an optimistic. Now, we sit with his bed downstairs and await the worst. He is doing good now due to the biventricular pacing. I just can't stop thinking, I can't get my hope up because I know what's going to happen. For his make a wish he got me a laptop for college which Im using to type on right now. How unselfish is that?

I guess what I'm trying to say is that God is testing me, can I put up with all of the stuff that he throws at me. Can I be as strong as my brother was? I'm trying to cope with this by learning about it. I'm planning to become a pediatric cardiologist. That's a long way from now since I'm just a senior in highschool.

How many people out there are going through this too right now, how are you coping with it?


[Re: Brother With Cardiomyopathy]

Author: Board Moderator (Sarah Beckley (---.client.attbi.com)

Date: 12-17-02 18:18

Dear Richard,

You have probably heard this a lot, but it is still true: what doesn't kill us, makes us stronger.

Everyone has their own method of coping. You have a hard road ahead of you, but your brother sounds like a gem and he will be with you every step of the way (in body or in spirit). I have learned a few things about hardship and pain; here they are.

First, you have to let yourself feel all the pain, anger, grief, etc. You will want to stuff it down and avoid it, but that only makes it worse. It may seem like if you let all the pain out, you'll split apart, but only through letting the pain happen does it leave you and set you free. I would walk down the street in the middle of the day with tears running down my face because something reminded me of my dad (who died on xmas morning '99) and I would just keep crying and crying until it stopped by itself. If I was at work, I would hide in the bathroom and sob if I needed to.

Second, you can't think ahead. Thinking ahead can be very hard and not helpful. You truly have to take each moment as it happens. Don't think about next week, not even tomorrow. Just think about the next 20 minutes. If that is hard, just think about the next 5 minutes. Make that five minutes be good. Then go on to the next 5 minutes.

Third, cherish the time that you have. I never got to say good bye to my dad. I saw him for the last time a month before he died. As rotten as it is that your brother needs a new heart and lung, it is a small gift to be able to tell him how much he means to you.

I think you will find a lot of help and support here. Sadly, there are many people in similar situations.

Please call Lisa at 973-983-7429. I think she would like to talk to your parents and see if she can be of any help. And you should ask her to hook you up with some of our medical advisors so you can talk about medical schools and so on.

Your brother wants you to have a wonderful life. NOT the life he would have had, but your OWN life full of what will make YOU happy. Never try to be who you think you ought to be, or he ought to have been or even who your parent's want you to be (sorry, mom and dad) but be who you are. You may not know who you are for a long time, but that is the way it works. Remember the 5 minute rule here, too.

take care,



[Re: Brother With Cardiomyopathy]

Author: Linda, Bd of Directors (---.wmnsmd.adelphia.net)

Date: 12-18-02 15:19

Dear Richard, Your entire family is dealing with a tremendous load. It sounds as though you are very close to one another and that support will get you through. I'm glad your brother is doing well with the BV pacing, technology is improving every day. Sarah gave you some excellent advice, and gaining information/knowledge is a smart move. Please talk to your parents about calling Lisa as Sarah suggested. I'm sure your whole family will be pleased with the information and help she will be able to provide. Keep us up to date with progress reports, so many will be praying for you all. Linda


[Re: Brother With Cardiomyopathy]

Author: Lisa Salberg (---.dyn.optonline.net)

Date: 12-19-02 07:13


You and your family have a lot to deal with, not to mention your brother. HCM is truely a family disease in every way. It is genetic and the effects of the conditon reach far beyond the individual. Obtaining other opinions regarding treatment may help, his treatment may be 100% correct, but hearing that from a doctor who specializes in HCM may do your brother and family a great deal of good.

My father is also Bi-V paced and has been for over a year now. He has improved a great deal and is able to function at a much higher level then he did last year. I know your brother is much younger and bi-v is not his long term answer, but it can help a great deal.

Your brother sounds like an amazing person, I would welcome him to our message board to learn, share and participate in a community that allows interaction with others yet lets him rest at home.

I hope you visit us often here at the HCMA and I wish you and your family a happy holiday.

Wishing you peace this holiday season,

Lisa Salberg