It has been 20 days since I was discharged from the BMT unit. It has been lovely to be home. My new mantra is every day at home is a good day. Apart from my blood production, which went on an unscheduled spring break immediately upon leaving the BMT unit, everything else has continued to improve - eye sight issues resolving, eating easier, appetite growing etc. Keeping up with the medication schedule, eating, and many hospital visits (5 days this week) has been like a full time job.
I have decided to include day numbers in my updates. When looking back over the past posts of others it can be difficult to workout when things happened. This site currently abbreviates the time period shown for a post to the largest available unit, i.e. from so many days past, to so many months past and then to so many years past. For those readers who are unfamiliar with transplants - Day 0 is the day when a transplant patient receives the donor cells, Day +1 the next day etc.
Something I have very much taken on board is a comment a work colleague made to my wife. It was that we continually keep wishing our lives away. I can't wait until I am 5 and can go to school. Can't wait to go to high school etc. etc.
Despite that, I could not help but look forward to November. It is a special month where I enjoy spending far too much time reading the ASH papers. It is also the month where I say thank you to all the mice that have been sacrificed over that past year in medical experiments to help the experts better understand our conditions and the future treatment options.
The rest of this post is really targeted towards future travellers who are looking back at how another transplantee progressed...
On Day +17 a neutrophil count appeared on my daily blood report and the process to get me ready for discharge was commenced. IV drugs were replaced by oral ones and the feeding tube removed.
On Day +19 my neutrophil count jumped to 0.5 and the other counts were looking good as well. Haemoglobin 99 following a couple of units of red blood cells and platelets 17.
I was discharged the next day. I quipped to my wife that the regular blood test was not done that day in case the large jump in neutrophils the previous day was an aberration.
My first blood test as an outpatient was on Day +22 and turned out to be my best one so far. Neutrophils 0.8, haemoglobin 95 and platelets 30. Yippee!!
After that my blood production decided to go on an unscheduled spring break.
On Day +27 my neutrophils were down to 0.35 and haemoglobin 66. My platelets continued to climb to 41.
Regular top ups with 2 units of red blood cells followed. The occasional tear drop cell was noted on my blood report. My platelets continued to be the good count staying in the 40 something range without any need for support.
On Day +38 the neutrophil count disappeared and my haemoglobin was 54. The usual 2 units of red blood followed.
On Day +40 my neutrophils were 0.17 and haemoglobin 60.
By the way, most MF transplantees do eventually engraft. It just takes longer for MF transplantees and sometimes requires some extra intervention.
On the eating front, an unexpected success was taking a course of Nilstat. I had commented at a regular check up that the taste in my month reminded me of oral thrush. It is side effect I have developed a couple of times in the past following treatment with antibiotics for unrelated conditions. The Nilstat resolved the taste issue and my eating greatly improved.
Also bloods have been taken for chimerism testing. Results will take a while, not that that matters, I am after all too busy enjoying today to get caught up in the 'I can not wait trap', or perhaps I should say I am trying to hard to avoid that trap.
Cheerio for now. Best wishes to All, including future travellers ...Simon