UTI, Adenovirus, Norovirus, C. Diff and CMV

UTI, Adenovirus, Norovirus, C .Diff and CMV

    The problem with increasing my anti-rejection dose was that it made my immune system lower. This created several issues. I was diagnosed with a UTI which is something I haven’t really had a problem with. I began to feel congested in my lungs and I needed a bronchoscopy. The results showed I had the adenovirus. I had also been having diarrhea for a while and a stool culture showed I had Norovirus. To treat the Norovirus, I was given three days of an oral antibiotic. It did seem like it had worked by the third day and my diarrhea was subsiding. All of this happened in the month of June of 2021. The diarrhea seemed to be coming back and by August another stool culture revealed I now had C. diff. Although the diarrhea was frequent, it was nowhere near as bad as when I had C. diff the first time, during my multi-drug resistant Pseudomonas stay. This would require oral vancomycin to be taken 4 times a day for two weeks. I would continue to get diarrhea frequently and in June of 2022, I would get another culture which showed I had both Norovirus and C. diff still. I was treated for both at the same time and they were finally knocked out. It had been really hard to deal with the constant diarrhea. It made leaving the house very difficult, which meant I was limited in the things I was able to do. I was always afraid that I would have an accident but I never did. My pulmonologist decided that due to all these new complications, I should lower my Mycophenolate back down to the original dose.

    I had one other complication in that same month of June, due to the increased anti-rejection dose. My CMV was elevated again for the first time in years. Up until this point, I had been taking a maintenance dose of Valganciclovir once a day to keep the CMV at bay. To treat the higher level, I was put on Ganciclovir IV, 3 times a day, for 6 months. This is the IV version of the same medicine I had been taking orally. I had to get frequent bloodwork to check on my CMV levels. Although elevated, my level was low, and LabCorp was not able to detect a level lower than 200. This meant I would have to go into the city to do weekly lab work for 5 months. My mother would drive me back and forth to keep me company and as she knew I didn’t care for the drive. There were other medications that could help but they were new, and only approved to treat higher levels of CMV, and I did not qualify for them. Finally, the level began to climb and I was now eligible to take one of these new medications. I met with an infectious disease doctor who told me that this medication was approved for the treatment of an active CMV infection and once my level was undetectable, insurance would most likely not cover it any longer. Being that it was a new medication, it was expensive. He assured me there was another medicine that had been approved for maintenance, and that I would eventually transition to taking that medication. The medicine worked extremely well, and it put my CMV back into an undetectable range. The medication also affected my sense of taste. Watery foods and fluids tasted off in an unpleasant way.

    After discussing things with the infectious disease doctor, and my transplant doctor, I was switched to the other maintenance medicine. As soon as I started this medication, I felt extremely sick. My stomach had intense pains and I lost my appetite. I asked my doctor if I could switch back to the previous medicine but she said that wasn't a good idea. She was afraid I could have already become resistant to the old medication. I was going to have to grin and bear it. The days passed and I felt no better. I couldn’t do much other than lay in bed or on a couch. But slowly, I started to feel some relief from my symptoms. By the second week, I was feeling well and once again was able to eat. I was so grateful that my bad reaction was only temporary. I have remained on this medication and CMV is undetectable.