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Went to the heart failure/transplant specialist...what a letdown

Apr 28, 2012 - 5 comments

Today I had my first appointment with the specialist and I was a little excited and a little scared, but those feelings gave way to disappointment. The good: my EF is still about 30%. The bad: my SOB is getting worst and so is my swelling. The ugly: I do not qualify for a heart transplant. I was told today that because I have multi-organ diseases that I would not be a good recipient for transplant. See, I am Diabetic (with serious complications due to very late diagnosis including - shrunken kidneys???, bladder paresis, gastroparesis, peripheral neuropathy) I also have a form of Sickle cell disease. I think I had my hopes that if things were getting worst that maybe I had some options...NOPE. I don't qualify for assistive devices such as LVAD, but I do qualify to get an upgrade to my Medtronics Secura ICD to a bi-ventricular ICD to help with pumping efficiency. The doctor was very sensitive and told me after I was trying to pick my face up off the floor "we will just have to fight back really hard with medications". So we changed from Toprol XL 125mg 2x day to Coreg 12.5 2x day, from Lasix 120mg per day to torsemide 100mg 2x day. I have no idea what I am suppose to say, I cried with my husband because a man killed his wife and committed suicide (she had late stage Alzheimer's and they had been married for over 50years) It made me realize that I wanted to grow old with my husband, we have been together for 22 years and I though I would get at least another 20 :)

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566249 tn?1510751258
by GardeniaDreams, May 10, 2012
one of the meds I have for the heart failure is Procoralan / Ivabradine perhaps they could give you that and I have the Digoxine for more pumping power  Send me message soon I have some brain fog and forget things was very ill last month.
Greetings take care GardeniaDreams.

566249 tn?1510751258
by GardeniaDreams, May 11, 2012
Hello , are you online now ?

566249 tn?1510751258
by GardeniaDreams, May 11, 2012
The right side of the forums is a column CHF ask a doctor you could perhaps repost your question there ?
You could also ask your own doctor if there are similar patients like you with those set of issues ?
Take care greetings.

566249 tn?1510751258
by GardeniaDreams, May 11, 2012
The right side of the forums is a column CHF ask a doctor you could perhaps repost your question there ?
You could also ask your own doctor if there are similar patients like you with those set of issues ?
Take care greetings.

566249 tn?1510751258
by GardeniaDreams, May 14, 2012
hello how are you today ?
found the university of Maryland Medical Center  CHF www.umm.edu/altmed/articles/heart-failure-000039.htm
there is also the site www.chfpatients.com

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