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Cardiomyopathy

AlaskaGirl
0 Recommendations

I received news today that the 41 year old daughter of a friend of mine has just had a diagnosis of cardiomyopathy. She is on a regimine of medication but is also having trouble with her kidneys as well. Therefore, they need to address that problem before they can fully deal with the heart issue. She has been told that if they cannot adequately deal with the cardiomyopathy with medication then the alternative is transplant.

What do others with this problem have to say that I can relay to her mother? I don't have experience with this type of heart disease - mine is completely different. AlaskaGirl

Explore topics in this discussion:

Exercise Heart disease Heart transplant Diet restrictions Pacemaker Cardiomyopathy

8 replies

kardia

HI Alaska Girl,

First give her this site...

I could relate, I am 54, ICD implanted, because for months I my doctors have been working on getting my medications right for my cardiomyopathy, and are introducing the idea of a heart transplant.

Doesn't seem many on this site have had that experience because you are the first I have read inquiring...

My problem is low blood pressure, so they cannot give me the meds that help cardiomyopathy. Cardiomyopathy as I understand it, is damaged heart, and in my case, it is progressing to get worse. last month, because I couldn't get up off the couch, it was the first time, I t hought, a heart transplant has gotta provide a better life then this.

Here is what I know: They can last 10 years, you can't be too sick, otherwise they won't get you one, age has no boundaries. My doc told me about a few recipiants who were in their 70s, and I know a set of twins in their thirties who both had one, one has had two, they will continue to get them. They do everything now, ski, work out at the gym, healthy minded. It comes with its own set of mediction regiments, that could be overwhelming to some one who does not take care of themselves, and simply routine to some one who can follow the routine. Mostly, I see it as a huge honor to get some one elses heart, with it comes an enormous spiritual responsibility to it, so self care is crucial.

That is all I know and have also been thinking about these past two weeks. Feeling better now, doc says it can be temporary because he just tweaked my pacemaker, and I am still not on meds for cardiomyopathy.

Welcome to the site...thank you for asking the question that identifies the elephant inside the room....

Prayers for your friend.

Winglover

Kardia,

Finally I have find someone else out there with this scary diagnosis. I myself do not have it. Unfortunately last May my 15 yr old son was found to have dilated cardiomyopathy. Docs are telling us it is from a virus that attacked his heart muscle. He has tolerated all his meds well although it has been a long haul watching my once hockey playing son be content to sit on the couch. There are days I just want to scream and those where I think I'm losing my mind wishing I could turn back time. I am a critical care nurse so knowing what I know makes it worse sometimes. My thoughts are with you!

martzj

kardia and winglover,

My heart goes out to both of you. Winglover, there are several other transplant recipients here...maybe they will see this. One was a 19 year old girl if I remember correctly. Try not to give up hope. Her story was amazing...and her life is very active now.

Thank you for being one of those critical care nurses who help patients keep their spirits up with a kind word or a light joke. It was nurses that got me through...all intelligent and patient and funny in a practical way that was very reassuring. It helped normalize a very surreal situation.

My thoughts are with you and your wonderful hockey playing son. Keep in mind that Wake Forest University has already developed a way to regrow organs (in pigs now, humans next) and are perfecting the growth of coronary arteries from a patient's own blood cells within 3-4 weeks! They are already growing and transplanting human bladders. Your son's youth is to his advantage in this case. The North Carolina research triangle has a lot going on. I hope your son isn't staying too isolated. That is so easy to fall into...and he needs his peeps : )

No giving up hope ladies! (smile) Things are advancing every day!

hugs to you both,
Jaynie

WandaJ

Greetings, all.
When I first received my diagnosis of idiopathic dilated cardiomyopathy (IDCM) I drove home (2 hours) and did a websearch. The best site I found was simply www.cardiomyopathy.org (out of the Heart Institute in London).

On that site I found descriptions for the various types of cardiomyopathy,along with information on various treatment options. When my diagnosis was refined to include left ventricular non-compaction (LVNC), the site had information on that condition as well.

I'm sure there are other good sites out there. I share this specific site simply because when I needed immediate information, that website provided it without being alarmist or depressing (in my humble opinion).

My prayers are with you and your friend's family,
Wanda

AlaskaGirl

Thank you all for responding to my question. I know this is a horrendous situation for this whole family and I knew our community would come up with information for them. I will relay this and be sure that Mom gets on the site for herself and her daughter. What would we do without each other? Don't want to know. Been there, done that! AlaskaGirl

Patybluetx

Yes, cardiomyopathy is VERY scary esp since most of the time Drs don't give you a lot of information on it. But she shouldn't give up...first of all. Attitude has a lot to do with recovery of any condition. You should know that when I was diagnosed with PPCM (a type of cardiomyopathy) my kidneys were begining to fail too. Fortunately, I had a very quick recovery. The kidney specialist told me that the kidneys are one of the quickest recovering organs we have b/c they go through so much. So there is definitely hope there. Also, I too was told that if the meds didn't work, I would get an pacemaker, then if that didn't work I would get put on the transplant list. It all freaked me out, big time! I was 26, had just lost my daughter and on top of that I had to deal with this potentially deadly condition. Well, it turned out (for me at least) that it was all in the presentation. They give you all the scary stuff first so that you know the worst case senerio.

But there are a lot of things she can do. First, she needs to follow any diet restrictions they gave her to the 'T' as well as the exercise restrictions they gave her. If she takes care of herself, she can help her body heal. I hope that her kidneys heal quickly so that they can put her on the appropriate meds and she can be on the road to recovery.

Good luck!
Martha

Winglover

Wanda J,

Thank you, thank you for the link to the website for Cardiomyopathy. I checked it out and it provides a wealth of info and explains it very well. They also have a section for children that will be helpful for my son as he is only 16. I'm going to e-mail them for a
copy of a brochure for him.

Lisa

WandaJ

You are most welcome, Lisa!
I was thinking today as I showered that I should add that website to my favorite links, so others might be able to find it if they look at my profile page.
I think I'll go do that now!
Hugs to (((all))),
Wanda

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