Infant heart transplant and immune system failure

[msorolis]

My neice had a heart transplant 12 years ago as an infant.  She has been miraculously healthy until this year.  Recently she has had a recurring fever with nausea and vomiting.  Repeated antibiotic treatment has only eliminated the problem for a short while and then it reoccurs.  She was hospitalized to evaluate and during the evaluation it was determined that her immune system has basically shut down.  They have ruled out cancer.  Does anyone know of other avenues we should pursue?

[grendslori]

Something very similar happened to my daughter about a year after her heart transplant. She started running a fever (103-104 range) that was doing all kinds of things like being high in the morning hours and normalized as the day went on which is the oipposite of what should have been happening. She was hospitalized for a few days with the normal hydrating type things, antibiotics etc. That was at our local hospital. The day after she was discharged, still sick, we had to take her back to the ER. They called UofM and she was sent by ambulance back to UofM where they thought she had cancer. Her immune system was also non existant. They did a bone marrow biopsy and all kinds of tests but it wasn't until they took a nose smearing sample during the middle of the night when her temp was 103. It turned out she had the parvo virus which is basically a cold for normally healthy people. We should have had her in the hospital where she had her transplant done in the first place and not wasted our time with the local hospital. Is your niece being followed up by her transplant team?  

[msorolis]

Thanks for the comment.  They checked her for cancer as well (negative, thank God) and ran a host of other tests (and she was at her transplant center.)  After several days of IV antibiotics, she has been fever and symptom free for about 3 weeks.  Thank you for the info.

[grendslori]

I'm so glad to hear that!!