On July 7th I was admitted to the ER for coughing up.blood. Four days later I was diagnosed with cardiomyopathey and my EF rate was 20%. Sadly I was only 24 and am reminded how Im "too young" to have this condition. If there is anyone out there in my age range with the same problem please respond. There are no.support groups where I live.
I wrote to you on the regular Heart Forum, but will also send this reply as well for the benefit of those on this forum. Cardiomyopathy happens in the young; babies and children also suffer from cardiomyopathies; my own daughter was diagnosed at 6 years of age and was transplanted at 22. This form of heart disease is not as uncommon as one would think. My daughter also suffered from Juvenile Rhuematoid Arthritis; something else people think never hits the young. Take care
You are NOT alone. I was diagnosed at 25 and I am now 34. It has been difficult to live with especially with no support. My husband doesn't talk about it so it "doesn't" exist and my children are now 8 and 11. (they were 3 and 4 months when I was told I was already in heart failure. My EF was 28. I have been on meds ever since and it controlled it for a while. I have been on several meds and after some time my body has built up a tolerance and they have to change them. Unfortunately even now with my EF being 48, I still don't feel any better than I did before. I am being considered for an LVAD As destination therapy, which is very scary. (i also have polycystic ovarian syndrome so that coupled with the cardiomyopathy makes it worse) However, some will be controlled with meds and be fine. One thing I have learned in my journey is that everyone is different and no part of cardiomyopathy is textbook. Be sure to follow your doctors orders, take all your meds, and really control your salt intake. That will help tremendously. Most of all, take rests when you need to, not over-exerting yourself. Once I do I'm down for several days. Good luck and I hope this helps...again you are not alone. God bless,
Hey, i am 21 years old and I've been experiencing heart problems since I was 14. When I was 14 I was healthy as ever untill out of the blue I wasn't feelin well all day and when I came home from work I told my mom I was having these chest pains when I breathe in and out and my lip was numb. She immedietly took me to the hospital in which all of a sudden I was sent into the ICU . I was in one hospital for a week untill they pretty much told us they didn't know what to do with me because nothing was helping me and my temp. And blood pressure just kept dropping. I had tubes down my throat and was connected to every hook up possible. It took them 2hours just to transfer me onto another bed where they transfered me to a heart special hospital. I was giving a temp. Pacemaker. And was in that hospital for another week. I had complete heart failure and they said It was a 97% chance tht I was not going to make it, but it was a miracle that I did..doctors have no idea what could have caused this so said I had Myocarditis and I was on 9 different meds twice a day including steriods. This was seriously the worst time for ANYONE let alone just a 14 year old...later on my doctor diagnost me with cardiomyopathy. A year later I was finally off my meds. Because they weren't making much of a difference. I have been off all meds for about 4-5 years now...but than just a few months ago I decided to finally follow up with a cardiologest in which discoverd I have congested heart failure and an EF of 25-30%. And I'm taking Carvedilol to hopefully lower my blood pressure and heart rate. In hopes of improving my EF with in 3months to determain if I need an infibulator. I was also wonderin how many young people are also going thru this. As I was since I was 14.
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