I had 3-4 days of chemo – fludarabine and Cytoxan – followed by 3 days of total body radiation. It didn't feel like much, but after the second treatment I was puking afterword. Transplant the same as any other. Unfortunately I was very sick afterward and spent 80 days. Was discharged to our temp home nearby on our 30th wedding anniversary!
There were lots of ups and downs with many misfortunes. My CVC came disconnected with the IV and I woke up with blood all over. Had to make an extra trip to IR to make sure the line was in place before my transplant could happen. Mouth sores were terrible and lasted about a week. Team said I could have no more Ativan (lorazepam) as it was making me too "loopy," and minimal pain meds for my headache since most of them have Tylenol (acetaminophen, paracetamol) in them. Dilaudid (hydromorphone) wasn't designed for headache. After many drugs were tried for my headache, I was allowed one Fioricet (butalbital, acetaminophen, and caffeine) per day, which I was asking for for several days in a row.
I was diagnosed with vancomycin-resistant enterococci (VRE), so I had to garb up to go walk in the hall. (When I had my first stem cell transplant at Karmanos, I didn't leave your room if you were in isolation.) It took 30 days for my white count to come up for discharge. I went home only to return less then 24 hours with a temp of 102 degrees F (38.9 C). I even got my same room back, minus all the decorations I had on the wall and windows. I had a viral infection and needed meds to eliminate it. I took a nose dive and don't remember most of March. Had a feeding tube since I couldn't eat much, CT and MRIs, Endoscopy with biopsy and sigmoidoscopy same reason. I am glad I don't remember those. All the tests showed I had some mild graft vs host disease.
At the end of another month I was discharged home, only to return within a few days. I fell and hit my head, I was very disoriented, and my pupils weren't equal. Back again in a very cold room. After lots more tests now with neuro and eye tests, it was discovered that I probably had scopalamine on my hands from the patch behind my ear for nausea, and it cause the eye issue. Seems the disorientation was due to something else. I don't remember.
I made a rapid turn around at Easter time and went home a few weeks later. I stayed at our new home away from home and stayed one month when I was allowed to come back to my house, across the state from Ann Arbor for 6 months.
I still see my transplant doctor every few months, and was given the OK to see other doctors, after consulting with him. I even get to drive short distances! My appetite is still wimpy but I am doing ok. My labs are great and I am able to get out to my regular events, except work. I was terminated after using up all means to hold my 1 day/week position. It's ok, think God may have a different plan. First to get well.
That's my story in a nutshell. Sorry if I went on too long.
