My 5-year post-HSCT report: March, 2019 - I'm SO Not Dead Yet!

67.

Бо́гу моли́сь, а добра́-ума́ держи́сь.  

Trust in God, but steer away from the rocks.
 Literal: Pray to God, but hold on to your good mind.

March 1, 2019 - Nearing my 5-year post-HSCT anniversary

That's me with my husband, Jack, arriving in Hawaii last summer. Great fun, and included my entire family of 14 - one of our annual family trips (my Christmas gift - I truly will do anything to keep from having to shop in a mall!). 

I think it says a lot about where I am, enjoying these extra years I have because of HSCT. I have lost 3 friends in the past 12 months, all of whom had CIDP as i did, and began with it about the same time. I was the only one who did HSCT. It has been so devastating to watch those CIDP friends not make it, and others continue to get worse over time. And I do know that there but for the grace of HSCT go I. 

Treatments for CIDP are rough. IVIg, at first a miracle, takes its own toll in time. I had serious problems and side effects from it in 2014 when I made my own decision to go to Moscow for HSCT.  

I do not believe I would have had these last years without HSCT.

It has not been simple nor without health issues, true. My post a year ago outlined the most serious post-HSCT issues I've had. My lung issue is resolved for now, which was the most serious. I do have scarring in my lungs from that (Cryptogenic Organizing Pneumonia). It is associated with HSCT, but primarily for patients who undergo donated stem cells, and rare in autologous, or our own stem cells transplanted, so not so common at all. Still, if you develop a chronic cough, it's a Dx to outrule if you are a post-HSCT patient. It's deadly. I am not dead yet!  

In fact, my lungs were healthy enough to undergo full anesthesia twice in recent 6 weeks, both related to a rather nasty kidney stone which finally was removed about 12 days ago. Doing fine!  Yes, some of the medications that graph directly back to that 2011 flu shot and all that came after it have a side effect of causing kidney stones. This is my 2nd in 2 years, both requiring surgery. Still, I am not dead yet!

I'm so "NOT DEAD YET", I leave in a few weeks for another month in Europe, to be thrilled by watching my granddaughter fall in love with Paris (and London) for the first time. She missed our earlier big family trips to both, sadly - but this is our year to make those memories together. 

I've watched my older grandkids excel in school, and turn into teenagers, and learn to drive. I've watched the little ones learning to talk, adding brilliance after brilliance. They are all my pride and joy.  Look what I would have missed, I'm quite certain, had I chosen to not go for HSCT. 

DO IT NOW!

If you're fighting one of the many autoimmune diagnoses that are proven to be mitigated by HSCT, do it now! The earlier in your disease progression you take this step, the less residual damage you will live with. I wish I'd gone earlier. I still have problems with pain in my feet, legs, hands, and numbness and altered sensation that is a result of the demyelination of sensory nerves. I am grateful that my motor nerves and muscles seem more responsive and I am able to live a full life. Some things linger. Most unseen by the world. My superpower is denial, and I ignore as much as I can and just get on with living my best life.  This is the year I will turn 70.  And I'm not dead yet!  (smile)