So here is the promised status report, but first the facts:
• In day +5 my white cell count dropped to 0.0035, indicating my immune system was practically eradicated
• Day +6 was 0.03
• Day +7 was 4.5
• Day +8 was 35
• And today, day +9 was 130
Professor Dr. Ho, the amazing gentleman who runs the stem cell transplantation ward of the Heidelberg university hospital told me this morning that he expects the count will exceed 1000 in the next 48 hours. Thereafter my new immune system will rapidly recover to normal levels (varies by individual, anywhere between 4000 and 10,000).
Now when you ask an MS patient who is undergoing HSTC to describe how they are doing, one must realize that there are 4 distinct phases.
• Phase 1. Chemo
This is for most people, and thus for me too a relatively benign procedure. Nothing much more than your old (MS) self.
• Phase 2. Two weeks Post transplantation
The transplantation itself is not an exhilarating experience, but it only last 20-30 minutes after which they carefully monitor your hart, blood pressure, and look for allergic reactions. In my case I had a flue like reaction. But this only lasted 30 min. after which I slept for 4 hours. The chemo truck hits most people, and thus me too 2 days post transplantation. Every person experiences this phase of immune deficiency differently. I can only speak for myself: I caught what they call an ‘opportunistic infection’. The doctors believe the neck catheter (used to administer chemo and stem cells) was the culprit. As a result I was running a fever and was on antibiotics. At day 4 I completely lost my appetite, stopped drinking and had a nasty and painful sore on my tong. I think the feature of this phase that will probably leave a lasting impression on me is borrowed from MS terminology: ‘The HSCT blanket’ – fatigue, a sense of detachment from reality, hard to explain, but it like a vampire just sucked life out of you. This was the down side, but the lifting of the blanket once your stem cells get into action and your blood count begin to recover, oh boy. No, I am not a Christian, but today, the first day for lifting my blanket, I am because I now have a profound understanding of the concept of resurrection.
Phase 3. Mth 1 thru 6
I bet I will discharged and on my way back home to my beloved wife and son on Tuesday next week. This marks a complete 3-week stay at the hospital and exactly in line with plan. The first 8 to 12 weeks will be dedicated to restoring this battered body of mine i.e. rest, good nutrition, exercise and worrying only about the things I can do something about. Sounds simple? Give it a try…
Phase 4. Mth 7 thru 24
This is the phase where SPMS patients often start seeing benefits in term of damage repair. I think George and others have described this extensively so I will not attempt to reinvent the wheel. Besides, they have been there, I haven’t.
At this point my only hope is that this CtrlAltDel procedure will stop the beast from causing more damage. This will become apparent in phase 3. I do not count on any significant damage repair. Should this turn to be the case, I will view this as some sort of celestial gift.
Still I can’t help not sharing with you that for the first time in some 8 years I sweat again. Strange how illness and adversity can help us to rediscover, appreciate and enjoy the ‘smallest’ and the most “trivial’ of things.
Last edited by Asher
on Fri Jun 17, 2011 8:43 pm, edited 1 time in total.