Just wanted to give you a quick update. I am 3 1/2 year Post HSCT.
Status of all the good things:
- I am working full time, doing courses, seminars and lecturing.
- I walk without aid, have never used anything (exept holding hands with my man)
- I can babysit my granddaughter over nigth – and her parents are happy to ask me!
- I drive, no problem with either hectic city or long distances
- I can walk the stairs without holding the rail (well, I need to concentrate, and usually I use the support. Sometimes without truble, when tired: Dragging myself up)
- I started with a gym-membership recently, and do ordinary strength-training like I did before. (Just a bit more careful, and there is no doubt for people around that I have a walking-issue.) Hopefully, this will reduce or stop the detoriating of muscles and stability.
So, is it better than before? No, I have definetively experienced a reduction of mobility and stability. Compared to Pre-HSCT, I do not go skiing, I have not dared biking for more than a year, I have reduced balance and walking capability. The best walking is straight forward with no obstacles. Please do not ask me to turn around, look somewhere, or change direction rapidly 🙂 Yesterday I almost fractured my little toe on the living room carpet…….
I am adjusting to the “new” life of limitations, and embracing all the possibilities I still have.There is no regrets about doing HSCT, but still: I was hoping for better results.
I used to say “Don’t do this before you really have to!”. Now, I am more like “Do it as soon as possible!”. This change is because of:
- There are more facilities offering non-myo, and this treatment is getting better every year. I did Myo BEAM, that was really tough, both treatment and side-effects. A milder but still effective HSCT opens for earlier intervention
- It seems like peple doing this early are getting very good results.
I wish you the best new year, and the best of luck to all of you doing HSCT in the future!