Just spent another week in the hospital!
 

Yep, 3rd time since Memorial Day. This time it was for Fever and Chills. I actually was feeling fine other than having 101 fever and chills. They were never able to figure out the source, nothing grew from the samples they took. They finally let me go home today with 2 oral antibiotics. Hopefully I will be able to stay home until my STC, which now looks to be in 3 weeks. I think there is more of an urgency now since my neutrophils are zero and I keep getting sick.

Only had 2 rounds of Vidaza, which just managed to destroy the few neutrophils I had left. They will do no more. Will get chemo for a week at City of Hope before the SCT. Hopefully I will be completely well by then.

Sorry you're having a hard time. Think of the hospitalizations as a coming attractions for the SCT - try to stay positive and keep a sense of humor - you're going to get through all this and be healthy again before you know it!

My transplant is delayed two or three months - so they are doing a stent to clear up a partial coronary blockage next week - some pre-transplant hospital fun for me too.

Did they find you a full match or are you going with a 9/10?
All the best,
Paul

Thats great that you are home and they are moving quickly to the transplant. Have they done a bone marrow biopsy to make sure you are in remission? My dad had one last week after 3 cycles and showed improvement but not exactly what Dr. M wanted to see. Dysplasia is still seen in all 3 lines.

Paul S- that is what my husband about getting a preview of what's to come. I hope the food is better at City of Hope! To answer your question about taking the 9/10 match - yes we are going with that one because of my low neutrophil count. They want me to get rid of this infection, but are concerned I might get another one.

Sorry your sct has been delayed. I don't have a date yet for my or even have testing set up since this infection is still lingering. I actually had to go back to the hospital the day after they sent me home. I am home again now but with IV antibiotics for 2 weeks through a picc line. The fever is finally gone.

Italian Burrito - no bmb yet - probably in 2 weeks after they feel confident that I am infection free. I am pretty certain I am not in remission since I only had 2 rounds of chemo which all but destroyed my neutrophil count. The good news is that the rbc and hgb counts have gone back up. Glad that your dad had some improvement, sorry it wasn't quite what the doctor wanted to see.

During my wife's transplant, she couldn't eat and was fed her nutrients by IV, but I ordered from the "room service" menu since it was available to caregivers. The menu choices depended on the day of the week, and I learned what I liked fairly quickly. There was only one item that I really didn't care for, a type of soup, so I learned not to order soup on that day of the week. Everything else was fine.

We ate quite a few meals at the City of Hope cafeteria between appointments for many months before and after her transplant. The food was fresh and quite good, not what you'd expect for a large institution. I believe their meal service is outsourced to a company that specializes in it.

Bad News - My donor dropped out :(
 

Neil - thanks for the info on the City of Hope food!

It looks like it may be longer before I get to try it. My doctor called me today to say that my donor had dropped out. Back to square one to find a donor. Sigh...

Tracey

Sorry to hear about your donor - have you considered an umbilical chord/ half match transplant? From what I understand the long term results are about the same as a matched donor transplant. It looks like I may be going in that direction at this point. Meanwhile, I hope you feel better.
Best - Paul

Hi Paul S - Yes actually I was thinking about that yesterday. I am going to talk to the MUD search coordinator and my STC doctor about it on Monday. Originally they were looking at 2 possible donors so I am going to ask about the 2nd donor match as well.

Thanks, I am feeling better. No fever for almost a week!