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!  

Thursday, March 12, 2015

64.  Ups, Downs. . . a Few Loop-the-Loops, Such is the 1st Year post-HSCT, and toward a "no moss" year ahead. . . 

Вре́мя -- лу́чший до́ктор

          Time heals all wounds.
                 Literal: Time is the best healer

But also:

Видна́ пти́ца по полёту.                     A bird may be known by its song.
                            Literal: The bird is known by its flight.

Three months have gone by since last time I posted.

I spoke just a bit too soon in my last posting. I was so thrilled to see my blood cells hit the normal ranges, I completely overlooked the one very important one - IG levels. And turns out when I asked to have that tested, I learned that with a normal range of 700-1600, mine were only returned to a rather disappointingly meager 225.

Before I knew that, though - So thrilled was I, in fact, I booked a few lovely trips to celebrate my 1-year immune system birthday (1 year from the date of my stem cell transplant 'zero' day, or the day my stem cells were re-introduced to my body to begin their work.

Since a 225 isn't anything to depend upon in fighting off either bacteria or viral infections, I realized my folly.

So what to do? Well, I'm about to go for my 2nd IVIg 'booster' of immune globulin from others to augment my own while it continues to populate and climb in the rankings 'til it gets to that magical "normal" range.  My new Dr, a hematologist/immunologist I really like, is helping me with the details of those booster infusions and hopefully my own IG levels will come up over time.

Meanwhile, I am going for IVIg at about 3-week intervals, or at least a day or two ahead of travel.  Little enough when considering all the treatments/Rx of the 3.5 years of active CIDP.  But it did feel like a set-back and I'm still a bit cautious. Can you say "germ-a-phobe"?  I fight the urge to stay in, not go into crowds. I am working on that.

Travel is the balm of my soul:

My husband and I just returned from the trip he gave me for Christmas: Miami for several days and a Western Caribbean cruise since we've neglected our experience of that part of the world. If I'd known I was immune-deficient still, I would have opted for another destination. What in the world good is the Caribbean barrier reef if you are not yet able to safely swim in it, dive, snorkel, enjoy that azure blue water?

And in fact, in spite of the IVIg boost, which consisted of 40gr delivered on a single day ahead of travel, I ended up coming home with the virus my husband caught on ship 3 days ahead of me catching it from him.  If I didn't love the man, I'd probably hate him. It was a mean virus. But I will say that I think he had a worse bout of it than I did so I'm thinking the new immune system is working well. I did run a fever around 102 for nearly a week (my normal temp is 96.8) and it really did flatten me. I don't normally just go to bed with a virus, but it made anything but that just impossible. But I didn't die, and now I have only a residual cough. You bounce back pretty well from that post-HSCT weakness that hits with illness.

But I can clearly add my 2 cents worth to everyone's experience of how an illness knocks you flat after HSCT.

There, got that disclosure out of the way.

Now let's talk about the good stuff:

My energy is nearly back after the virus, and that would put me back to pre-CIDP energy levels.

I am healing prior nerve damage, not getting more. I still have more leg/hand pain and numbness than I did when I left for Moscow last year at this time, so I attribute that to the injury of chemo. It is not a party, to be sure. But I feel certain it will rectify over time.

I'm a die-hard optimist, and not only am I certain my CIDP is gone and my new immune system is functioning and gaining ground, I can also say that it has been so so worth it. I have had a good year - even with roller-coaster ups and downs, far better than the 3.5 that preceded it. HSCT was the right decision, and I would advise it to anyone whose health can be restored to them - autoimmune illness sufferers whose disease is in the list of about 26 now being treated with HSCT.

I have grown hair!  YAY. Yes, I have had haircuts even, trying to even it out into something resembling a style. Not quite there but you can see I do have curly dark hair that might be slightly thicker than my sick/CIDP hair was before HSCT. The little bit of gray that frames my temples and face is there, still, but it's not worse than it was before chemo.  LOVE the curl! It gives me a little body I have never had in my hair. Who knew?  I might have had chemo sooner if I'd been aware of how much easier hair with body is.  Now this photo was taken after I'd been really sick for 7 days running, so cut me some slack, please. But you can see I do have hair now - see it comes in before you know it.

In fairness, below is how I looked in January, so it's coming in faster now, too:

Don't worry about the hair thing - it's temporary.  Today I gave away several wigs I'd bought and never did wear. I had one I liked and which got me through all the days that required me not to be bald, but the hair thing has been much easier to go through than I ever would have imagined. It's surprising how your priorities right themselves when it's your basic health at issue. 

A rolling stone gathers no moss:

Next week I have my darling littlest grandson (and his parents) coming for a Spring Break visit. THIS little guy feels like part of my healing challenge because I've wanted to be flying to see him in Denver and just have not had enough time with him. So many things in the way. Fire. Did see him when my Dad died/funeral, of course. And a visit there in the mix. He was ill, then I was ill. Time goes by.

So he's now a whole year old and I've only been around him about 10 days of that entire year.  That's a horrible loss to me, and one I intend to make up for. Look how cute he is by now - far cuter than my hair and he grew this cute in the same amount of time it took me to get HSCT and a bad hair-do.  (smile).

The day after he and his parents go back to Denver, I'm on a jet to Europe with a relaxed happy itinerary of 6 weeks. I think on the day my immune system turns 1 I will be in Berlin.  I've never been to Berlin, so that will be fun!  Looking forward to the trip, and mostly to knowing I can get back to this part of my old life. IG levels - hurry up!  Meanwhile, a little IVIg is just what the Dr. ordered.

I'm taking all my family on vacation this summer. We decided we'd enjoy NYC and Washington DC together this time. Twelve of us - I rented a big house in Washington DC so we can all enjoy each other to the fullest.

We are so fortunate to have one another, and our health.

Be well!  Have a wonderful Summer!