Little Update and questions!

I haven't posted in a yr..had a good yr., but was hit hard w/either a virus or my disease has worsened since Halloween. Now I have O2 in the house & my Dr. wants me to meet the Transplant Team at UPMC. I'm actually feeling a lot better than I was, but they still want me to meet the team to get the process started. I can't believe it..I thought I was yrs off from starting this process! I'm hoping I stay the way I am now so I can put off the transplant as long as possible!!

Question for those w/kids that have had Transplants at centers away from did you do it w/kids?? That is one of my biggest stressors when I think of the transplant. Aside from the obvious stress of it!

Another ???---Anyone on Cytoxan??  Dr. stopped the Cellcept b/c she didn't think it was working anymore.  Now I take 50mg of Cytoxan.  

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  • Thanks so much for the advise.  Yes, they said I would be in rehab for a few weeks after the transplant...which was causing me stress b/c of the kids.  What did you do prior to the transplant to get in shape?  I'm doing a diet that I read about by Dr.Thomas  Rau (swedish dr.) that is supposed to help with inflammatory diseases.  The only exercise I do is taking care of the kids and whatever little I can do around the house.  My Drs don't seem big on pulmonary rehab programs.  Your thoughts?  Thanks!  I'm glad to know you are doing well and were happy at UPMC.

  • Hi Diana,

    I had my double lung at UPMC 17 months ago and have meet a few other post transplant patients who have had younger children, some have left them with family members others were in hotels.

    The social workers at UPMC are very good at helping with advise.

    Jus another thought, i was only in presby for 7 days post transplant and went home, even though we were told to plan on about 3 weeks. So think positive and stay active, you may not be gone that long.

    I hope this helps, if i can help with questions about UPMC please just ask.



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