Monday, July 27, 2015

65.  Full circle - Definitive Proof I No Longer Have CIDP  - WOW, huh!

Бережёного Бог бережёт.

The Lord helps those who help themselves.

 Literal: God keeps those safe who keep themselves safe.

I picked that Russian saying because at this point in time anyone with autoimmune disease really has to be their own best friend, help themselves to knowledge, research, and usually pay their own way to get their HSCT done, once they realize that's their best hope. My parents used to repeat the English version of this saying throughout my childhood, and I did not grow up thinking things would be handed to me, nor that just sitting back and praying for something was the way to go. To get to HSCT, you must be willing to take action. And "healing" is an action verb, too.


I think it's pretty telling to note that I spent my 1-year anniversary of my HSCT procedure's new birthday, April 29, when I meant to write in this blog again. But I was enjoying myself in Berlin, Germany, seeing it all on foot (yes, it was exhausting) amid a 6 week trip through Europe, UK.  A solo trip, buying antiques and visiting places I love, I found my stamina was only slightly off pre-HSCT normal.

I met Gwen Higgs while there and so enjoyed her company and guide day in the Cotswolds. She's wonderful (another HSCT/Moscow friend, though she went for her MS). I spent time with Linda Martin, who joined me in London for a few days to catch up. My friendships with these others who have also gone through HSCT are so special to me!  Linda had HSCT for CIDP via Chicago, Dr. Burt's program, and was my mentor. I love these women!

Here I am, several weeks ago, enjoying a family trip to Washington DC with my kids and grandkids. I'm the chubby one far right with short (chemo) hair. Missing just one granddaughter, we had so much fun together exploring US history. We toured everything - even an impromptu invitation to tour the Pentagon with a Lt Col. who got off the Metro with us. There were years not so long ago when we had to forego this annual pleasure because I was just too sick, unable to walk, had no energy to participate.  I got CIDP.

BUT. . . .

Today is a RED LETTER DAY for me.  I've waited quite a long time since my last post. I thought I'd write at the 1-year after HSCT point, but I was in Berlin then having fun and just didn't get it done. I spent 6 weeks wandering Europe, celebrating my recovery, and truth be told, some of it made me a little worried perhaps I still had some low-level CIDP going on. A very scary thought and one I kept pushing to the back of my mind, along with the blog update - for that reason. Just wanted to be sure to post positives.

In fact, it takes a long while to truly get over the chemo and bone marrow assault that is HSCT. I found it more daunting than I'd expected.  I had found the actual month of HSCT much easier to get through than I'd thought, though, so rather expected to just be find after it. That first year has it's ups and downs. You feel pretty good and then some little infection will slam you and you have some recurrence of the old symptoms of your autoimmune disease.

There's a FB group only open to post-HSCT "veterans" and lots of others write of the roller-coaster (as Phoebe named it) of recovery, so I knew from them that it was pretty normal.  You seem more vulnerable to illness, which makes sense since your own blood levels and immune system is a baby, rebooting over time. Quite a few had problems with recurring UTI, and I was also among those. I've had 2 nasty upper respiratory "bugs" that were hard to fight off. Both were following my extended travels, and both because my IG levels remain too low. They're coming up, but not as quickly as I'd wish.

When your IG levels are slower to rise after HSCT, they advise supplementing with IVIg. Not in the high dose I was on for CIDP, but some to boost my immune system to avoid getting ill. I did one 45g IVIg ahead of my 6 weeks in Europe and didn't get sick at all. I didn't ahead of a Caribbean Cruise and then again recently ahead of my big family trip to Washington DC, and both times I came home and was sick as a dog for 2 weeks.  Lesson learned: IVIg supplements for 4 months, 45g per month (about a half day plugged in) and just keep living my life. Another 6 weeks in Europe coming in Autumn, and I'll be all prepped for it with prophylactic IVIg. Hopefully soon that will no longer be necessary at all, as my own IG levels continue to rise into the normal range.

Normal IG levels:  700-1600.  Mine currently: 423.  So we're working on that.

But why is it a RED LETTER DAY, you ask?  Well, because today I had the lumbar puncture to test for protein in my spinal fluid (CSF).  You might know or remember from earlier in my blog, that protein, if way too high, is the definitive test result for diagnosing CIDP. The process of demyelination of the nerve's myelin sheath that causes disability, produces high protein levels in the spinal fluid.

Here's what I just got back from this morning's spinal tap (other than a backache):

36 - mid-normal range.  
This is proof positive I am cured of CIPD. Imagine the huge smile on my face today, getting this news.  

What you intend to accomplish, you can!  Don't take your diagnosis of CIDP or other autoimmune illnesses as a death sentence, or as a proclamation of disability.  YOU can take on this enemy and battle it into submission. All it takes is the will to act in your own behalf, and the desire to have your life back. 

This blog and many others can be your guide. Contact me if I can help you in any way. I am happy to be in position now to truly pay it forward.  

I consider this my final blog post. I am cured. 

I will return now to my very active life, grateful every day for all the many people I learned from, followed, trusted on my way through HSCT. 

And not the least of those is this elegant brilliant kind man, Dr. Denis Fedorenko,  Moscow's Pirogov Hospital, Moscow, Russia. 

He saved me!  


  1. So happy for you. And so true, anything worth having is worth fighting for... A good, quality life. ❤️ What a shining example you are. Thanks Susan

  2. Greetings. I included your blog and or video in my website. It's a list of first-person accounts of people who are battling GPS and its variants.

  3. Greetings. I included your blog and or video in my website. It's a list of first-person accounts of people who are battling GPS and its variants.