Heart Transplant - CMV - Need Real Information

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CindyS
New Member


Date Joined May 2006
Total Posts : 4
   Posted 5/10/2006 10:34 AM (GMT -7)   
I have a question for this group that may not be very common. I had a heart transplant 10 months ago. The donor was CMV+  a virus found in most of the population. I was CMV- so very at risk to get the virus due to my immune system being suppressed. Usually the virus attacks within the first few moths of transplant. But 2 months ago, it became active in my body and I became hospitlaized from it. My transplant coordinator did not take me seriously and because she delayed in treating me, the virus got into my blood stream and through out my entire body.
 
After getting out of the hospital, I have spent the last 6 weeks on IV infusions at home 2 times a day every day of a cancer treatment called Ganciclovir. It is a mild form of chemotherapy. I am working part time, trying to make it through each day. Losing some hair, headaches, feeling very fatigued, but will end the treatments this Friday, May 12.
 
My questions are: 1. Has anyone been in this situation and had the virus become active again shortly after treatment ended? 2. What symptoms did you endure from the IV treatments? Any emotional upheaval? 3. Did you gain weight or have trouble with fluid retention? 4. Did the CMV cause you to go into rejection? 5. Did it effect your kidneys?
 
I ask these questions not for answers from a doctor--but real people with real information. Too often the nurses and doctors I deal with--and I am sure many of you do also, only tell us some of the information as they think they are protecting us from mind games. I always know when they are not giving it to me straight. I am so swollen I am concerned--not fearful--I may be having a rejection problem but the medical staff thinks I am "paranoid".
 
Okay, hats off to you all today! Stay strong! "Sympathy is two hearts tugging at the same load"

“Never let the sense of past failure defeat your next step.” Oswald Chambers


DREAMGIRL
Veteran Member


Date Joined Jan 2006
Total Posts : 600
   Posted 5/10/2006 7:13 PM (GMT -7)   

:-)  i cannot help you with an answer just wanted to say i hope you do not suffer anymore problems, keep checking, someone will reply bye

 


els
Veteran Member


Date Joined Oct 2005
Total Posts : 4031
   Posted 5/11/2006 6:49 AM (GMT -7)   
Hi Cindy,  You have been through so much...I just dont even know what to say.  I dont think I could it.  Your an amazing person.  I dont believe we have anyone who has had a heart transplant post here before.  I could be wrong, but I dont recall seeing it.  Hang in there if someone does a Google search with any of the key words "heart transplant" "CMV" the forum will pop up so you could get some responses that way.  Keep posting and letting us know how your doing...Take care ~ Elisha


 


lifeintolives
New Member


Date Joined May 2006
Total Posts : 2
   Posted 5/14/2006 3:18 AM (GMT -7)   
Cindy:
 
Yes I am familiar with CMV.  Cytomeglovirus.  I have posted my daughters story as well on the message board.  Her first transplant at the age of 14, she did have CMV.  It's interesting, before she was released from the hospital on her 1st transplant she was sent home with Gancyclovir and was on it for 3-4 months.  Even with being on Gan. she still got the virus.  Yes there was weight loss, and weight gain, but mostly due to the high levels of prednisone.  She too was hospitalized.  With the 2nd heart transplant on 3-27-05, they didn't have her go on Gancyclovir, but instead gave the pill form which is called Valcyte.
 
You are pretty much correct in how you are feeling.  And I'm sure with the lab work your transplant team should be following it very closely.
 
It is vital and important especially in the first year to be aware of everything.  Even if it seems little.  If your co ordinater is not taking you seriously, you can always leave a message for the doctor.  You must take your health into your own hands,and empower yourself as a real active role in maintaining your heart.
 
I hope you'll have the opportunity to read the message board I posted.  And I look forward to helping you in any way that I can.
 
Michelle

DREAMGIRL
Veteran Member


Date Joined Jan 2006
Total Posts : 600
   Posted 5/15/2006 2:02 PM (GMT -7)   
:-)  so glad you showed up, i felt helpless, so thank you michelle for helping her out with that info
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