Today is my stem cell birthday. Hard to believe a year ago I was in Tel Aviv undergoing HSCT. Oct 14 was the day I got my stem cells back.
After HSCT I had some immediate improvements. Chronic pain in my eyes and feet all but disappeared and fatigue, which was by far my worst symptom, went away. I no longer take modafinil which I was taking before for fatigue. Also my voice returned to normal. I still slur a bit but I don’t sound like I’m forever in the library. I still tire easily compared to before MS but I’m not constantly exhausted. I’m on disability now, have been for the past year. I have been exercising for 11 months and I’m taking a rehab class at the U of C but although I’m in reasonable shape I haven’t found exercise helps any. Just makes me tired and makes my walking and balance worse.
I am hoping I may yet see further improvements but as I’ve stopped declining all the time I’m very happy.
It’s my 6 month birthday today! All is well I’m happy to report. I haven’t gotten any better since the start (fatigue and chronic pain were pretty much stopped) but more importantly I haven’t gotten any worse. I am quite pleased with how things turned out. I’m exercising regularly in the hopes I’ll see further improvement. So far so good, very encouraging results thus far.
A researcher in NY wrote an article about my treatment in Israel.
Today marks 3 months from day 0. I am doing well. As of last Friday the hematologist no longer needs to see me. My blood counts are reasonably normal and he said I am now only slightly immunocompromised. I haven’t noticed any changes but have been steady as she goes. That’s good news since before Israel I was feeling just a little bit worse all the time. If it is indeed stopped then my body may heal some and I’ll see a mitigation in some of my symptoms hopefully. Nerve repair is a very slow process so it’ll be quite a while even if it happens.
So things are looking good so far and I remain hopeful. I am very thankful to all that contributed and allowed me to have this procedure in Tel Aviv
It’s good to be home!
We arrived back in Calgary on Tuesday. The flights were good although the connection in Toronto was a wee bit rushed. I don’t think we’d have made it if I didn’t have the wheelchair priority service.
It’s a little bit cooler here than it was in Tel Aviv, I think my Canadian blood got a little thinner because I’m feelin the cold. The absence of hair probably doesn’t help either.
The goal of the treatment was to stop disease progression but I did notice some improvements immediately. My fatigue has vastly improved. Don’t get me wrong I’m not a whirlwind of activity now but I no longer feel like I could sleep all day despite having stopped the stimulants (modafinil and caffeine). Also the chronic soreness in my feet and eyes has disappeared, which is nice. I may still see more improvements over time but all I can do is wait and see. Improvements are a bonus, not getting worse was the goal. Only time will tell.
A big thank-you for all the help I’ve received from family and friends that allowed me to get this treatment.
A huge thank you to my parents who not only allowed me to have this done but even signed up to be my nurses/ babysitters while having the treatment done.
Saw Prof Slavin this morning, got the thumbs up! We’re still trying to sort out the flight home but should be Wednesday night, if we’re lucky tonight. I’m not out of the woods yet; my immune system will be very sketchy the first three months from day 0 so I’ll be mostly hiding out avoiding infection but all in all a pretty good start. Looking forward to continuing recuperation at home.
Er no, wait, it’s just my hair falling out.
I was at the clinic this morning and they said my blood test yesterday was good and took the picc out. I’ll go in for a blood test tomorrow and see Dr Slavin on Monday. As long as there are no unexpected issues I’ll be good to go!
Things are still going good. Just laying low, doing my regular tests, and avoiding potential infections. As part of that I can’t eat anything that we haven’t prepared, so the hotel suite has also been our kitchen. There are some kitchen supplies that other visitors have kindly left for others to use so we get by alright. Space however is fairly limited, a dream kitchen it ain’t. This was last night’s feast, chicken cutlet, peas, and quinoa. I’m supposed to put back as much protein as possible so this is a great meal for that, and quite tasty to boot.