58. My 2-month Status Report - I am the grey horse
Вали́ на се́рого, се́рый всё свезёт.
Literal: Put everything onto the grey horse, (s)he'll bear anything.
I've been home from Pirogov, Moscow, Russia for 2 months as of yesterday, July 12, 2014.
I meant to write this then, but I was enjoying a lovely pool party with my family. I'm the one who is lounging, (toes still in sandals) taking the photo.
My new immune system is doing very very well, thanks.
I feel awesome physically, though I still am not quite allowed to swim in pools, oceans - well, a number of things not yet on my list of things I can do. But I'll tell you what I've been up to after I make one serious point here. I'm putting this first because it is SO IMPORTANT:
Алты́нного во́ра ве́шают, а полти́нного че́ствуют.
Little thieves are hanged, but great ones escape.
Literal: The thief who stole an altyn (3 kopecks) is hung, and the one who stole a poltinnik (50 kopecks) is praised.
First let me just say that if any of us was stealing the Nation blind like the Pharmaceutical Companies are, we'd be hanged. And before I tell you how well I'm doing (and I am!), allow me to just remind you that before I paid for my own HSCT in Moscow (Pirogov, via Dr. Fedorenko), the cost to maintain my CIDP was in excess of $244,000 a year. Most of that cost, the vast majority of it, was for IVIg and was paid to the BIG pharmaceutical companies who produce it.
Extrapolating from the doubled profits of the final 10 years showing on this chart, (given that I can't find a current chart), one might rightly assume that the pharmaceutical companies have increased their profits by at least another hundred percent in the 10 year period from 2004-2014, so we're looking at least at an 80 billion dollar a year industry. There's nothing wrong with profit, and I'm the first to say so. But when that profit is used to stymie the approval and implementation of a proven procedure that eliminates both the suffering and disease PLUS the huge costs our USA healthcare industry spends annually, then there is a real problem. And it's a problem that lets millions go on suffering and getting worse, and costs the Nation both in medical care and in lost work and productivity, hurts families, makes people needlessly suffer. So just wanted you to keep focused on the fact that you're probably still suffering from your autoimmune illness, whether CIDP (like I was) or MS, Lupus, Celiac's, Sjogren's, Rheumatoid Arthritis, a host of others. There is a cure (okay, can't call it a cure because we have not yet gone our entire lifetimes without recurrence) - a treatment that, with 75-80% success rates, causes permanent remission. Sounds like a cure to me! And because we make SO much money being 'maintained', we need to really fight to get HSCT approved for wider application so we can be healed. Going abroad isn't the answer - being VERY LOUD to your congressman and to your insurers and to your doctors is.
__________________________Okay, enough of that ____________________________________
Бережёного Бог бережёт.
The Lord helps those who help themselves.Literal: God keeps those safe who keep themselves safe.
My second to last post (#56) was about the California Wildfire that occurred when I'd been home just 46 hours. We were evacuated (meaning WE evacuated ourselves and anything valuable we could grab in about 20 minutes' time). My brand new immune system not only dealt with the stress of it quite well, it helped me have energy enough to meet the demands of that emergency. True enough, I was still in the stage where getting back from the HSCT and from Russia made me nap twice a day. I will still claim that was jet lag, mostly.
Not long after moving back into our home, which the firemen were able to save (thank them and thank God), I started with a mystery fever. I wrote about that in my last post (#57), though we had not yet received the bill for my 4 days in hospital. Remember that Dr. Fedorenko said it was a fever caused, most likely, by a virus (either latent or new) and that it would self-resolve in about 7-10 days. He was right on, nearly to the day, as it was gone by the 9th day. But the cost to my insurer for the 4 days of testing in that $Billion new hospital I can see from my house ended up over $47,000. Since HSCT cost less than that, and I was in hospital for nearly 5 weeks in Moscow, I thought it worthy of note here.
Following that, we had workers in our home cleaning for 2 weeks (minor smoke damage) and putting on a new roof on the east-facing side (wind damage). We were fortunate to have only that, but it does not make for the best environment for recovering from HSCT. Lucky for me, I have felt really just very very good physically since the Chemo knocked out my errant immune system, so this, too, was easy to cope with.
I tell you these things because back-to-back stressors like those play hell with autoimmune ailments and would have had me completely wiped out and exhausted back when I had CIDP.
But I do not have CIDP anymore.
That is not to say I do not have trouble or heartache.
Бог дал, Бог и взял.
The Lord giveth and the Lord taketh awayLiteral: God gave, God took back.
THIS is the hardest challenge. I was with him much of that time. I ignored the mandates to stay away from hospitals, stay away from crowds, etc., and did my best to see my Dad and my family through his end game. And I kept thinking how grateful I was for him, for his life and example of being both adventurous and also self-directed. Without his example I might not have sought out HSCT. Without his encouragement, I might not have grown into someone who takes on obstacles in life and comes out on the other side of them, mostly unscathed.
Dad's funeral service was attended by literally hundreds of people, most of whom wanted to hug me. There is NO HUGGING during the first months post-HSCT, as many of you know. I was able to fend off many, but the dear old friends and distant relatives I had not seen for years (many of them) might have made me breech the rule a bit. And still I did not get sick from any of that. Lots of hand washing, true. But in fact, this body, genetically linked to my Dane/Swiss Dad just simply ROCKS! And I'm sure he knows I'm doing fine, though will miss him forever!
I'm so grateful he knew I had gone for HSCT, and that I was back and feeling fine - that my CIDP was not an ongoing problem anymore. I'm pleased he lived to see that I beat CIDP and was doing well in building my new immune system. And that he knew I got my great genes from him, giving me a much younger biological age, according to Dr. F.. He liked that. He had it, too.
I'm so glad that Dr. Fedorenko took me as his patient when he did, and that I can tell each of you still reading this that HSCT is the one way you can help yourself. If you're still suffering from your autoimmune illness, waiting for God to cure you, you are not doing your job. YOU have power here. YOU have to put it to work in your own behalf.
Again - from the time the chemo part of the process was finished, I was free of CIDP. My immune system's relentless and devastating attack on me was ended. I'm still building a new immune system, but I'll tell you, with the challenges I've traversed since getting home that 2 short months ago, I am healthy. I have my old energy back (pre-CIDP levels). It's hard for me to think I have to hold back from anything, but I'm trying very hard to do so and to allow my immune system the best chance to develop well and heal fully.
I am cured!
If you are just finding my blog, know that post #50 is an excellent one to review. It's a layman's presentation of how HSCT works and why anyone with autoimmune illness needs it.
If you are being told by your neuro HSCT is too dangerous, or it will not work - please tell him "Bullshit!". And have him get in touch with me and all the others who thought autoimmune illness and the maintenance drugs were "too dangerous", and that we took the incentive to get to the only 'treatment' that actually stops the immune system, healing the problem at the cause.
If you want to get better, read my blog through, and others. Learn all you can and make your own decision. HSCT works. I am living proof it is worth your time, money (I paid for my own out of pocket) and faith.
___________________________MORE INFO FOR HSCT'ers______________________Just some notes about where I am right now, health-wise.
I truly do feel great. I feel like my normal pre-CIDP self, but with some pain and neuropathy issues. Energy levels are excellent. I don't feel 'foggy' or sluggish at all, which is fantastic!
I still have some nerve damage that will take time to heal. It might not heal completely, but I think I will have improvement. Nerve damage heals over a period of up to 3 years.
I do not have any new damage since HSCT. This is all old damage that persists:
I have pain in my legs, arms, worst in my feet and hands.
I have sensory misinformation from all those affected areas, mostly my feet, lower legs.
I have some balance problems owing to the sensory loss and misinformation from feet
And here are some things I no longer have:
I no longer have serious ongoing fatigue, and my energy levels returned to pre-CIDP highs
I no longer suffer the side-effects of a myriad of treatment drugs, including high BP
I no longer suffer migraine headaches which were from disease progression or IVIg
I no longer need a nap at this stage, though for the first weeks post-HSCT I was giving in to one in
morning and afternoon, both. I have so much energy now, it's thrilling!
Things I've noted from the chemo:
I grew a light sparse fuzzy fine crop of hair this past month and most of it was very white. I've shaved it as
of yesterday, knowing that it's the chemo fluff everyone talks about and that real hair won't return for
another few months. Interesting, though, that it's so white. I didn't have very much grey before.
I have bands of white across all fingernails, thumbnails. Also the nail growth following those bands is a bit
wavey and lighter than the older growth. Definitely a bit strange. I'm sure toenails are the same.
I did lose most of my body hair; my eyelashes hung in there for about a month and then finally all fell off. I
have a few sparse short ones showing up. I think that's par for the course by now and don't expect my
real ones back for another few months. Eyebrows have hung in there pretty well, though more sparse
than they were before chemo.
My stomach and internal organs felt 'tender' for the first month or so. They didn't hurt so much as they
made me know they were in there. I've been very careful of what I eat, per the list of okay foods. I've
departed from the list only a handful of times and luckily did not get ill. But I am pretty strict about the
DO NOT DO IT YET lists. This part is harder in what I am not able to do yet (not that I'm not capable, but
that I am not wise to do with a new immune system). I long to swim in the pool or ocean, but not worth
all the risks just yet. I'm careful about being barefoot in dirt, and I do not garden or plant or weed. I did
catch myself weeding a flowerbed at Dad's (my) home in Utah while I was talking on the phone one day,
so it is a constant vigil I keep with that list in my head - sometimes accidentally doing something I am
unwise to do. But the good thing is it is because I feel so good. I feel normal as can be, except the old
nerve damage to my legs, feet, hands. My energy is great, as noted, and that alone makes me think I
am totally normal. So it really does take some effort to remember I have to be careful, still. Isn't that
just wonderful! ; )
Here are my latest blood tests, for those who want to compare:
And for anyone who just happened to drop in on my blog at this stage, HSCT works for all of these autoimmune diseases. They are symptoms of the underlying problem, which is that the T and B cells are damaged in the DNA level, and are attacking various systems of your own body, resulting in a variety (or clusters) of illnesses including the following, which oddly, does not have CIDP noted. I need another list: