Look Beyond The Heart

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Comment by Lisa on August 22, 2010 at 8:42am

Hi Allie, I assume you have talked with you doctors.Do they have anything to say about this? They told me it takes anywhere from 6 months to a yr after transplant. I had a k/p March 30, 2010 I started feeling better and more activity around June 1st. Every since then I have been doing well except for a low white blood cell count that has been going on since June. So I have been off of Cellcept most of the summer. It runs anywhere from 1.5 to 2.5.Are the meds you are taking can they cause you to be sick? I would think you must be losing some weight from this which is not good. I would have another talk with the docs sometimes I know you have to make them stop to listen to you.

Comment by Allie on August 17, 2010 at 6:42pm

Hi everyone. I had my tx in November 2009 and I am nauseous everyday and exhaused and spend a lot of the day in bed. Was this normal for most poeple? When did you finally get back to being a normal person again?

Comment by Paula M. Rice on January 22, 2010 at 3:33pm

NICOLA, hi. Looked Allomap & it's exactly what I thought. IE. blood work to replace biopsy. Xtremely poor result & ridiculously xpensive. So, NO, NYET, NEVER, again. Guess that was firm enough! Hope you are well. Hugs & Blessings, Paula

Comment by Paula M. Rice on January 21, 2010 at 10:49pm

For Carol Becker. By Allomap, do you mean the blood test to replace biopsies? If so, don't do it. They're finding that even if it, supposedly, works, it's not accurate. It didn't work for me in any way. We weren't told it was a completely experimental procedure & are still fighting the ins. co.! My docs aren't doing it, any more. It simply doesn't perform as was expected. Hope this helps & isn't too late. Just found this site. Hugs & Blessings, Paula

Comment by Michael Strane on August 13, 2009 at 10:21pm

Kelli,

I'm 11 months out. My experience has been a little different. I lost 45 lbs before the tx, down to 112 lbs, so the 25 lbs I've gain since then has been good. I've also been lucky enough to have not had any episodes of rejection. The meds affect everyone differently, I'm hyper sensitive to the immuno-supression drugs and have a lot of trouble keeping my white blood count at a healthy What I can relate to is feeling like crap. What I can tell you, is, it gets better - the frustration is that it take much longer than you want it too. I still feel like crap, relative to before my (sudden) transplant, but I feel light years better than I did 4 months ago. Also, I think it will get better as you meds stabilize. At 7 months my dosages were still bouncing around, they've been pretty stable for the past few check ups. Trust me, I know it can be hard, and scary, keep positive and get good rest.

Comment by KELLI SMITH on August 13, 2009 at 10:04pm

My name is Kelli and I am 7 mo. out of heart tx. I am so thankful for my gift of life and need to know what to expect to feel from here on out? I gained 50 lbs from my meds and still am having 1B rejections. Anyone????

Comment by Dave Yish on February 16, 2009 at 6:35pm

Hi Carol,
Sorry I haven't been on for awhile. I am on my third Allomap and everything has been great sio far. I love them compared to biopsies and my cardiologist is thinking of only running biopsies if I have a bad Allomap. Who said they are crap, your doc?

Comment by Carol Becker on February 6, 2009 at 2:31pm

i was told today that allomap is crap. anyone to comment?

Comment by Carol Becker on February 5, 2009 at 9:45am

anyone have any comments about allomap?

Comment by Damon Draheim on December 3, 2008 at 7:40pm

So glad to be a part of the group!:)

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