Tuesday, May 10, 2016

Day +30 (May 10) ... 1 month since transplant

Well, it's been 30 days since my HSCT stemmie birthday.  Overall, I'm feeling pretty good. 

The positives for me so far are as follows:

  • Vision is much better.  About 2 weeks before HSCT procedure, I was quickly losing my vision again.  I went to the neurologist and he put me on steroids but asked me to see my retina specialist.  My retina specialist indeed found inflammation in both of my eyes again.  He felt I'd be okay on the steroids prescribed by the neurologist until I had the procedure.
  • Fatigue is better (most of the time).  I've noticed that I'm staying up much later than before.  I feel like I used to be in bed by around 9 PM (at the latest), and now I'm up to 11 or so.
  • Heat Intolerance - this has gone away.  If anything, I seem to be cold now.  I used to need a fan blowing on me at all times.
  • I seem to feel better in general.  
Areas of minimal or no improvement:
  • I do not think I'm seeing any improvement in walking yet.  For me, I start out each day pretty good, but as the day wears on (or when I've been walking more than normal), I can feel that dreaded heaviness in my legs.  On my bad days, I really start slowing down and my legs start crossing when I walk or I get foot drag (or both).  All that is still there.  I went to see my son at his ballgame and from the ball field to the parking lot, my walking deteriorated so much I could barely walk.  My left foot was dragging and I was very slow.  It was probably the worst it has ever been.  I guess the good part about this problem is that there is no pain and that after I rest for quite a while, I seem to get full mobility back (at least for a while).  
  • My brain fog comes and goes.  I helped my daughter study for her college exam and the whole next day I seemed to have issues with brain fog. As before HSCT, the more I work my brain, the more issues I have with the fogginess.  When I have a day of not using it much, I seem to be okay.  Hoping that will clear up because it's quite frightening for me and I need to use my brain and keep sharp. 
  • I still seem to have urinary frequency and urgency, but it is manageable (as long as I'm close to a restroom).
  • Numbness/tingling in hands and feet.  This may be a little better, but I'm still noticing it, especially in my hands. 
I know this is a process and I may not see the full benefits for up to 2 years, so I'm not discouraged at all.  I just want to keep track of where things are and share it across with anyone that's interested.

My hair didn't fall out like I expected.  I had shaved my head, but as the stubble has grown back, I keep waiting for it to fall out.  That's not happening.  I THINK I see two spots that look thinner/patchy - but not bad. I am seeing a lot more gray coming in now than when Scott shaved it. We probably shouldn't have shaved my head, but was told that at such a high dosage of chemo, it was guaranteed to fall out.  ...Hmmmm...  I wonder if it's still possible that I will lose it after a month?  Thoughts?  Maybe some people with chemo experience or health professionals can give their feedback in the comments section.

I'm staying inside for the most part.  I'm taking this very seriously and doing everything I can not to jeopardize my health.  When I do go out, I wear my mask and take my hand sanitizer with me.  With that said - I'm pretty bored but that's okay.  I'll take it.

Scott is back to work and I think he's happy about that.  He too was pretty bored spending all that time inside not doing anything.  We came home to some major plumbing issues and I know he's already tired of dealing with that!!!  Poor guy.  There doesn't seem to be a break for him.  One positive, his back seems to be much better.  We were pretty worried as while we were in Mexico he was having a lot of pain still from his back surgery, but it lightened up and he's doing much better.  

To finish up my Day +30 post, I'll leave you with a poem written by Morgan (mgcpd)....

I saw this poem on Google images and thought I'd share.  I found this to be a true statement for some of my issues that come and go and felt it may help some people understand MS in a humorous way.  The original blog has been removed, so I don't how to give the appropriate credit or ask permission to re-post.  So Morgan, if you read this, and have issues with me posting, just let me know and I'll remove.  

Hematopoietic stem cell transplant, HSCT, Multiple Sclerosis, MS, Myelin, Inflammation, Clinica Ruiz, Northwestern University, Chicago, Mexico, Israel, CTCI, Italy Careggi, Russia, Maximov, Avonex, Betaseron, Copaxone , Novantrone , Tysabri, Gilenya ,Tecfidera, DIAD, MRI, EDSS

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