← Return to New & feeling lost online: Seeking heart transplant support group

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@1075

Hi Colleen,

Thank you so much for such a quick reply!

No. Not at this point. It looks like the one med. they've tried so far is now starting to work. I realize this may disqualify me. And if it does, I truly don't belong! I looked for a heart failure group, and thought this one included heart failure people. Apologies if a wrong conclusion! And apologies for taking your time, if so.

Jen

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Replies to "Hi Colleen, Thank you so much for such a quick reply! No. Not at this point...."

Hi@1075,
Jen before we had our heart transplant, all of us had heart failure. I was on
meds for heart failure for 9 years before needing a transplant. My diagnosis was sarcoidosis induced cardiomyopathy.
Stay in the group as we have experience. It sounds like you haven't been to a cardiologist, just your internal medicine physician or PCP.

Feel free to personal message me and we can talk by phone too.
I've been there and know that it can be scary. It was for my family as well.

Best wishes, Ellen Estrada

Hi Jen, as @estrada53 said I also had issues with my heart due to heart failure for about 10 years prior to my transplant. You are definitely welcome here and as they decided on treatment options there are many other groups within the Heart arena like Pacemakers which I also had to help with a portion of my treatment over the years. So feel free to ask any question you have and we can find other groups within this online community to help.
So you have been diagnosed with heart failure which sounds really bad, but has so many levels and the treatment options are many. So don't worry as the term is talking about how much blood leaves your heart per beat. This is usually represented by a percentage known as injection Factor. So to be diagnosed with heart failure usually its below 30 % . But honestly I did not have any major issues when I was at 30. When I first got diagnosed I left the hospital with a pacemaker with my IF at 5 % and for a normal person it is usually around 50-70 % depending on age. Have they mentioned anything about you injection Factor? Also you mentioned a medication as we all have had many different ones so if you want information on different issues with them please ask and im sure someone has probally taken them.
Again Welcome and you will find we are here to help .
Blessings