(This is being written from my mom, Ashli’s, point of view)
I knew transplant wouldn’t be the cure all to our problems. I am a bone marrow transplant nurse. I know the risk of infections, the side effects of the meds, the unpleasantries of transplant.
Our first issue post-transplant was diarrhea. Dash started an antirejection medication called Cellcept. The biggest side effect of it is heartburn and diarrhea. Dash got diarrhea immediately. This then caused a really bad diaper rash. Dash’s poor butt was in so much pain. The diarrhea eventually subsided, as did the rash.
Then came Dash’s first UTI. He started having a fever, so I called his transplant coordinator. The coordinator straight cathed Dash and his urine grew E. coli. They initially straight cathed him on a Friday, and recollected a sample on the following Tuesday because it was resistant to Bactrim, the first antibiotic they would use to treat the UTI. Tuesdays culture also grew E. coli so they started him on ciprofloxacin. His fevers resolved and he started feeling better almost immediately.
Then he got his second UTI. We went in for another straight cath. This culture grew E. coli again. Less E. coli than before, but E. coli none the less. (the first two grew <100,000, this time it grew 11,000) Now the E. coli was resistant to ciprofloxacin as well. The doctor wanted to hold off on antibiotics to prevent further antibiotic resistance. A few days later Dash woke up with a fever of 39 degrees Celsius. 102.2 degrees Fahrenheit. I called the on call nephrologist (because of course everything happens on a weekend) and we he ordered Cephalexin to start immediately. At our clinic appointment the following Tuesday, the nephrologist had spoken with the urologist who recommended starting Macrobid prophylactically to help prevent future UTIs. We started Macrobid as soon as his cephalexin was complete.
The Macrobid made Dash vomit. We have figured out if we dilute it in his formula and administer it over 3 hours he can tolerate it.
Dash has developed peripheral neuropathy. Another side effect of his medications. His hands and feet are extremely painful. He cannot describe his pain/discomfort, but boy is he in pain. We tried decreasing his Tacro dose, didn’t help. We tried Tylenol, topical lidocaine, capsaicin, nothing helped. We finally got Gabapentin and this has helped tremendously. He still gets annoyed at his hands and feet, but nothing in compare to how he was prior to the gabapentin.