A lot of what to expect is dependent on the conditioning treatment. No slouch either way, but some can cause more side effects. My conditioning consisted of Fludarabine, Clofarabine, Busulfan, and SAHA 1000mg daily for 4 days. I was super nauseated and even managed to throw up some blood at one point. Use the baking soda and sterile water rinse to prevent mouth sores, but as far as keeping the sores from forming in the throat there isn't really anything you can do about that. You will more than likely be given a pain pump at some point and you can press it ever so often for pain med infusions. Try your best to stay ahead of it. Eating is going to be really tough and you will probably lose some weight during the process. I went in at 165 and was 141 a month later being discharged. A solid chance you will develop a fever from infection or just being neutropenic. It doesn't mean the process isn't working. Shakes will become your best friend to attempt to get nutrition. Mashed potatoes as well. Soft things are good. Eat whatever you can but when the eating gets tough soft is good. When I was discharged, I couldn't swallow without some irritation and I couldn't taste the foods I was eating which can be quite frustrating. I noticed my taste fully return when I began to grow hair again. My NP said she has observed similar patterns to taste return with hair return in the past. I was fortunate enough to avoid illnesses post discharge from the hospital. Try your best to stay hydrated! I didn't do a good enough job inpatient for the one month and when i got out I was super weak. I had to use a walker for a week or so before I regained my strength. Walk as much as you can when you can. Exercise is crucial in the healing process. Don't overdo it, but do something. Ask your hospital for PT and OT to visit you and they can help guide you in exercises in a safe manner. This is the most I've ever talked to anyone about my hospital stay. I don't like being "caged" so it's kind of traumatic to relive some of it.

After all the gore I mentioned above, today is Day +83 for me. I remember transplant day like it was yesterday. Day +100 seems very far away right now, but you'll all of the sudden look up and it is here, so don't lose heart in thinking of the long journey ahead. Take each day at a time. Nothing else matters except getting you better.

I feel like I relayed my experience pretty well. Like I mentioned, each person will have a different experience. I wish you the best of luck and I look forward in hearing the positive news that comes from this journey (yes, there are positive moments :) )!

Andy

Thank you for your honest answer Andy! So glad you are only weeks away from day 100!