Happy new year!

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!


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