21. The Power of One Person

Уче́нье свет, а неуче́нье тьма.                                                       Knowledge is power

Literal: Studying is light; not studying is darkness.

I just wanted to toss this up for anyone following my blog. If ever you think one person can't change the tide, think again.  Here is our own mini-Moses, leading MS patients around the world to a better future, one HSCT at a time.  I could not be prouder of this young woman than if she were my own daughter.

Now, think of who you know or love who has an autoimmune disease - MS, CIDP, Lupus, Sjogren's, Stiff Person Syndrome, (etc., etc), whose illness you might even have doubted at some point. Call them and put them in touch with the information about HSCT. Give them a chance at a healthy mobil rewarding future.

Kristy is making a difference.  YOU can, too!  Here is her blog:


Moving Mountains 2013

Kristy isn't the only one. Having your MS or AD halted is a pretty powerful and awesome blessing. There are many in our group who are speaking out, getting the attention of T.V. producers, going on the news and media pages across the countries (all over the world).

Big Pharma doesn't want this to become mainstream because there is NO PROFIT IN CURE. But we think people are more important than profit.  Don't you?  Come on! Pass the word!

20. Advance Testing, Day 2:  Dread!

Назва́лся гру́здем -- полеза́й в ку́зов.                            

                      If you undertook something, do it; If you pledge, don't hedge.

 Literal: If you called yourself a milk-mushroom -- get into the basket!

Awakened at 6 a.m. by a crushing migraine, I thought "Oh shit! I'm probably in here in isolation ward with the flu and will kill everyone".  Luckily, it was only a migraine and once I took my meds specifically for migraine, it's slowly subsided through the day.  But there's something about waking up ill even before you're to the 1st stage of the rough stuff that felt a bit daunting to me. 

Explaining to Dr. Fedorenko I was afraid my little cold was something bigger, he sat me down and told me that migraine is a rather typical "disease progression" with CIDP, and that it means 'peripheral nerves' in my head are damaged. He hopes they will heal after HSCT, but he says it is not the result of IVIg, but of CIDP. So, the day got off to that kind of a beginning.

I did not know the increasing migraines were "disease progression". I wish I'd been in here sooner! Shower and dress, considering how many more times I will have to wash my hair - not so many.

Resolute to my decision, I proceed with testing and a hopeful desire for the thumbs up for HSCT

Today is Day 2 of medical testing, so leaving the migraine aside, I should first say that it began with 

  1.  urine samples at dawn   

  2.  nasal and throat swabs about 10 minutes later

A break, but don't eat that breakfast they brought - you do that later after.  

  3. A large serious Russian woman came in with a q-tip swab test, gesturing I needed to turn over. Pointing to my bum. Of course I did, and she did, and that was that. 

  4.  Dr. F. arrived and escorted me to my lung capacity testing, which I had to repeat 3 times to get the scores that won me thumbs up from the 2 techs and Dr. F.  

  5.  Dr. F. says it is time for the test I've been dreading and trying to talk him out of: lumbar puncture.  

NOTE: my last lumbar puncture, used to Dx CIDP in late Jan, 2011, was miserable. First my neuro tried in his office, 4-5 jabs and never could enter my spine (I have vacuum disc in 3 spaces from auto accident at 18, so it's a tight messy fit for a needle into the spinal column).  No go. Reschedule for operating room and a spinal surgeon who did the lumbar puncture guided by visual aid, MRI or something on screen). Success, but took the better part of a morning and was traumatic.

I'm telling you that story so I can tell you this one:  Dr. F. told me yesterday and again this morning that the lumbar would be very easy.  No pain. I stressed.  In fact, the cold spray of alcohol was the worst of it, and I was finished before I even realized it. The man is magic! 

LIE FLAT FOR 2 HOURS. And then if I want to, he says, I can go for a walk since it is sunny and beautiful outside today. I did.  

Taking iphone photos on the way, Hansel & Gretel like, so I'd be able to find my way back into the hospital, I ventured out to the grocery store, which was a good 4-5 block distance away. But first I took in the grandeur of my fine old hospital, the grounds, and even the old log-built chapel on site.  

If I pointed out my room's window, it would be just about behind the head of this statue, and 3rd floor (of 4). So that is where I am right now, looking out, contented to be a milk-mushroom.

The trees I look out upon comprise a lovely park, at the end of which out of view to me to the far left of my room's view is the log-built chapel:

Serenity in and outside, grounds warming today in a full sun. I walked about a mile to the store and back, not getting lost a single time (thanks, Kristy).

  6. Back just in nick of time to get scowl and be dragged off to have my ultrasound of chest cavity and monitored heart tests. Dr. F. said they would just do those tomorrow if I was not back in time. Nyet! Today!

So, here I am, committed!  Milk-mushroom IN THE BASKET!

19. And so it begins:   Pirogov, The Place Where I Will Leave my CIDP Behind

В Ту́лу со свои́м самова́ром не е́здят.                                                                    When in Rome, do as Romans do. 

Literal: Nobody goes to Tula with one's own samovar. (Tula is famous as city where the best Russian samovars are made)

I am in!  And now I turn myself over completely to Dr. Fedorenko and the staff and just let them do with me what they will.  They are in charge, totally. I am all theirs from here forward.  There is a certain calm to that, in spite of the fact that I can understand almost no one here at all but the good Dr. F.  The plus is he is here all day, lives 15 minutes away and is "totally accessible to me at any time" (I'm quoting him in that).  

So far he has walked me through parts of this rather vast historical hospital complex, to register, to pay for testing week, to begin my tests, which I have done.  It seems so strange to have my Dr. walk me to my ex-ray, to my MRI, to my lumbar puncture, etc. as well as to run out for cream for my coffee.  This is not my normal hospital experience, already - day one.

I clicked this photo of the old entry to the 19th century core building of the hospital from the x-ray room. An historical place of healing, a research hospital, as well. Old meets new. I am in the right place!  The nurses smiled very broadly and allowed me time for my quick photo. They are proud of where they work. You can see it everywhere. 

My room is within a few hallways from this window (above photo), but faces opposite and opens to a view of the surrounding forest of tall pines, oaks, birch trees still bare and wintry-looking. The large double window and the view is surprisingly calming, and it's quiet and comfortable here on the 3rd floor, which is the floor for isolation rooms during chemo. I am 'at home' and intend to do as they have me to.  

My room is efficiently arranged within about 10.5' x 18.5' (yes, I measured with my sewing kit measuring tape)  and includes the bedroom with a corner table and 2 chairs, the single bed, a spacious nightstand that is doubling as dresser. A separate section is the vestibule with fridge, microwave, cabinet and off that entrance room is the 3/4 bath. VERY clean, this level is the isolation room floor, which normally I would not arrive at until ready for chemo. But Dr. F. thought I could just enjoy it from day 1. And so this is my home for the duration, I believe. They will, once I'm to chemo and isolation, remove many of my belongings, hyper-clean everything in room, turn on the extra filters and UV protections, but my view will remain.  I like that this is 'home' for now. It may not look like so much to you, but I know for a fact that miracles happen here. I am in room 329, formerly that of Jeff, Vicki, Brooke, Lorraine, Linda and others who each arrived with MS and left without it.  It's a VERY lucky room. You can just feel it.

AN IMPORTANT CHANGE:  Dr. Fedorenko has just explained to me that there will be no more 2nd floor rooms for autoimmune patients. We will all be exclusively housed on 3rd floor from this week forward. More antiseptic, higher control, more comfort and ease for patients and also for Dr. Fedorenko.  We have no more floor 2 for any incoming patients.  This is excellent news for incoming patients!

Moving in:

As you can see, I have electric water pot for coffee/tea, and a tv (if I ever get to the point I want noise). 

No antiques other than the building and myself. I limited my decorating of the room to a photo of my kids/grandkids stuck to my wall (see above) and my Sferra light blanket and embroidered pillowcase (super soft 1000TC, of course) on my very own down-filled pillow from home. A girl's gotta have what a girl's gotta have, after all.  That deep window becomes my space for books, computer, the (to be opened at intervals) cards Linda Martin sent along with me when we parted in London (bless her!). And that deep window sill stands as a reminder of my home in Manti, which is also 19th century and has big deep window sills. I've definitely got this! 

And look who's name is on the door - that's me, doing as the Romans do, but in Russian: 

For those who are following in my footsteps, the following info from arrival last night:

  1. I arrived last night, slept quite well. My own down-filled pillow and lighter blanket helped make the room mine.  Dr. F. was fine about the pillow, and says I can have it in isolation, too. I will tuck it into microwave for a 15 second 'nuke' just to be sure.  

  2. My proudest moment was figuring out how to turn down the heat.  
  3.  There is not much space for storing clothing or anything else. A couple cubbies in the cabinets, 3 coat hooks - that's about it. You'll have 2 drawers, small, as well.  

This morning was my actual formal check-in, and I was walked to another building through underground hallways that connect the complex, to the bursar's office to pay for test week. The charge is in rubles, 30,000 for testing. Current exchange rate applied. Credit card ran through without any problem whatsoever. I think that is a great start!

Testing began today.
  1. Fasting blood tests (many) ahead of breakfast (which might have been cream of wheat).
  2. EKG
  3. X-ray of chest, sinuses (I think because I present with a light cold, he's being very thorough)
  4. EEG coming in an hour or so. And then I think I will be finished for the day.

Tomorrow's plan includes: Lumbar puncture for proteins (demyelination), MRI to search for the rare occurrence in CIDP of MS-like lesions in brain or spinal cord (very unlikely in CIDP). 

18. My Last 'Free' Day - and the Sun is Shining in Moscow!

Пе́рвая ла́сточка весны́ не де́лает. 

                                                        One swallow does not make a summer.

Literal: The first swallow doesn't make the springto come.

I'm on my way out to enjoy my first sunny day in Moscow. Still cold, but tomorrow it is supposed to rise to 50 degrees F. and so I'm hopeful that Moscow's Spring has sprung.

Meanwhile:

Because everything here is in Russian, I've relied upon other information sites, postings, publications more heavily. The Moscow clinic follows strictly the "International Standard", meaning it's pretty much all the same clinic to clinic.

So, I wanted to provide the following link which is to the Chicago clinic performing HSCT for autoimmune diseases, under the FDA Medical Trial run by Dr. Richard Burt, Northwestern University Medical Center (DIAD). The information on this site is excellent, easy to digest and runs the gamut. There is a "Patient's Handbook" that gives one a step-by-step review of what to expect and on through the procedure and even the post-HSCT restrictions regarding foods, activities.  And since one of my next posts will be about food (tomorrow is my last day to have a normal diet, I think), that part in particular is on my mind today.

Autolobous HSCT at DIAD

And direct your attention to a particular article that you might find interesting. Remember that many of these refer openly to MS, though the same information (and nearly the same illness description) applies to CIDP, which I have, and to other blood-related autoimmune illnesses.  It will help you understand.

Stem Cells - Don't Believe The Hype

Okay, back out into the beautiful old Moscow I'm growing to love.  What a beautiful old city it is!

17. Some Thoughts Before I Enter the Hospital - Medical 'Miracles'

Без муки нет науки.                                                     Adversity is a good teacher.                                                                                         Literal: Without torture no science.

About 48 hours from now I'll be booking into the Pirogov, ready to begin tests Monday morning that will confirm I am fit enough for, and also desperately need HSCT.  And my thoughts in the past few weeks have drifted to the meaning of "medical miracle".  

It's all relative, isn't it. 

In the 1500s, artists and scientists alike were a ready market for the grave robbers who supplied them with bodies for dissection, that they might learn not only how to capture the motion and life of a form, but also learn how the body works. Some of those earliest drawings are on display in this book housed at the Victoria & Albert Museum, London:

Just about everything back then that went wrong with the human body resulted in death. Trepanation was the medical 'miracle' of the day (and for centuries before) because the general 'science' was that the body had only spirit inside and if the body was ill, it meant that the spirits were evil within. So holes were drilled in the skull so that the evil spirits causing the disease could be released. A lot of prayer was involved as well.  Quite often the patients didn't survive the cure, as you can imagine. 

While in London this earlier in this trip, I visited a fascinating museum I'd never attended in London, the  

grand Royal College of Surgeons, and within it the Hunterian Museum.  The collection represents now just about 1/3 of the original specimens collected, dissected, preserved and displayed for the scientific advancement of medicine (the other 2/3 destroyed in the WWII bombings, sadly).  The collection of John Hunter (1723-93) is a lasting legacy of how recent is the science of modern medicine. Imagine the advances once it was considered that the body had functioning material and disease might not be spiritual in nature, but a malfunction in the great matrix of body systems being mastered, usually in secret, via dissections. 

Consider here a detailed intaglio print from an old late 1700s medical encyclopedia, still trying to gain an understanding of how the human body works. I bought these in London's antiques stalls. A bit over 200 years ago, they were cutting edge medical educational drawings.  

By that time hardly anyone was being released of their demons by trepanation, which seemed very old fashioned indeed in that modern c.1800 time of Napoleon, and in our new USA, just 24 years from the forming.  In that time, 'humours' of the body and of the blood seemed to be suspect, and the doctors all had lancets to 'bleed' a patient to rid them of the bad 'humours' in their blood that were making them ill.  Some patients died of infections from the lancets, of course.  Many more died of diseases not yet understood.  Modern (miracle) medicine is a relatively new science, after all.

Fast forward through countless advances to the present day. What is now known about the human body is that it is a matrix of DNA-determined systems, all of which have interactive function. And we're on the forefront of remarkable miraculous means of healing. The stem cell. The stem cell is nature's building block, in that it can mature to be a variety of structures, of cells.  What could be more miraculous than the facts of the human body, in health or in illness, and of the ways in which it interacts with the world in which it exists.

Fast forward to now. We have chemicals in our environment that bombard the cells, our DNA. They are modern chemicals the likes of which our species have not yet had time to adapt to through evolutionary methods, and that is the cost of the industrialization of our modern world. We did it too fast. Many of the chemicals we now surround ourselves with and consume challenge the human organism and cause diseases. The immune system can break down or operate at breakneck speed but without adequate direction, and in either case, we become ill.  It is not spiritual, and is not 'humours' - it is molecules and cells and DNA and is the subject of miraculous research and development ongoing.  Sadly, though, it is a modern world's penchant for profit that is muddying the medical miracle business - more money to be had in finding drugs that maintain the ill rather than in finding cures. More $billionaires at the expense of science's far better outcomes which might have already brought us cures for cancer and more.  

Some brilliant medical scientists remain fixed on the path to curative medicine. There are many. The funding to do their research is what is lacking in many cases. There is not so much money in curing someone as there is in treating their symptoms endlessly.  

IVIg is a remarkable case in point. Immune-globulin cells filtered from the plasma of thousands of donors and combined in a clear saline or sucrose solution that can be infused into a patient to disrupt the body's autoimmune attack can offer respite to the demyelinating nerves of the illness I have. It distracts my body's immune system from melting away my nerve coatings at intervals of treatment so that the nerve coating can heal or scar enough to allow more nerve conduction.  What a miracle it truly is.  But it's only a miracle for me for 3 weeks at a time, after which it is no longer effective and must be repeated.  And the annual cost for this single 'maintenance' treatment for me (just one patient) is upwards of $244,000.  

The only thing that will put my immune system into remission is not making people rich. It's only making them well.  HSCT has been practiced since 1959.  This is not new science. This is only new to the very lucrative autoimmune illnesses, and so far it's been successfully done (more than 76% remission rate and rising every year) for about 30 years. I know - I hate Wikipedia, too, but here is a little history courtesy of that site:

'Georges Mathé, a French oncologist, performed the first European bone marrow transplant in 1959 on five Yugoslavian nuclear workers whose own marrow had been damaged by irradiation caused by a Criticality accident at the Vinča Nuclear Institute, but all of these transplants were rejected.^{[34][35][36][37][38]} Mathé later pioneered the use of bone marrow transplants in the treatment of leukemia.^[38]Stem cell transplantation was pioneered using bone-marrow-derived stem cells by a team at the Fred Hutchinson Cancer Research Center from the 1950s through the 1970s led by E. Donnall Thomas, whose work was later recognized with a Nobel Prize in Physiology or Medicine. Thomas' work showed that bone marrow cells infused intravenously could repopulate the bone marrow and produce new blood cells. His work also reduced the likelihood of developing a life-threatening complication called graft-versus-host disease.^[39]The first physician to perform a successful human bone marrow transplant on a disease other than cancer was Robert A. Good at the University of Minnesota in 1968.^[40] In 1975, John Kersey, M.D., also of the University of Minnesota, performed the first successful bone marrow transplant to cure lymphoma. His patient, a 16-year-old-boy, is today the longest-living lymphoma transplant survivor.^[41]"

This is not new science. This is just not as profitable science as maintenance 'treatments', and so the world's growing epidemic of autoimmune illnesses are not in line for curative measures or remission measures so much as they are for expensive 'illness maintenance' drugs and treatments.  These are not harmless. These are often lethal in aggregate and over time. They do not cure. They perpetuate.  

This is not new science. This is nearly to FDA approval for wide-ranging use for autoimmune system failures like I have. And every year more and more patients are seeking it out on their own, paying out of pocket, getting the chance at healing. The numbers are astoundingly positive. By this point in time, 76% or higher success rate for 'full remission' (cure is a word not often used because we aren't through living our 'remission-rich' lives).  No other treatments or drugs necessary in almost all cases.  Yes, there are some risks. No, they are not worse than those that come with the current battery of Rx/meds treatments that only maintain the illness, however.  And that is the point I want to make:  Medical miracles, more and more every day. HSCT is one of those. Maybe in another 20 years we'll have the machine from the Sci-Fi movie "Elesium". But for now, THIS is my choir of angels - this is my medical miracle. Adversity is chaos, chaos preceeds order, order is the cure. 

I want to mention here that, even in advance of the formal approval of the FDA (stalled by Big Pharma) which is well into it's 11th+ year, there are many insurance companies now willing to cover the cost of HSCT for their autoimmune patients. Here is a list of a few, and with ACA in effect, YOU can even change your insurance policy now (even though you're ill) and go through the process to get HSCT done - IF you can find a clinic that is performing it and if you can get into the medical trial there. OR, you can pick a clinic outside of the USA for your Autologous non-myeloablative HSCT and get yourself well.  

• USA Employees Insurance
• Medicare
• Various: Blue Cross & Blue Shield
• United Healthcare
• Aetna

Remember earlier when I listed some of the side effects of Prednisone? Or of IVIg, or Tsybari (for MS)?  They are very dangerous on their own, and they don't do anything to cure autoimmune illnesses. They only mitigate the myriad symptoms of same, all the while creating their own side effects which then require more intervention by more drugs.  It is insanity, really.  But it is very lucrative insanity.

So, HSCT!  This is on my horizon. It's not without risk. It's just more likely to 'cure' my CIDP and/or put it in full remission than anything else among our current roster of 'medical miracles'.  And I'm ready!

Learn more by doing your own research. You can start by clicking this line:

   Hematopoietic Stem Cell Transplantation 

                                            Without torture, no science 

16. Water Cutting Through Stone - Making News, One Patient at a Time

Ка́пля ка́мень то́чит.                  Little strokes fell great oaks.

Literal: A water drop cuts through stone.

I'm still enjoying my Moscow tourist days, cold as they are and rough as my legs are taking that cold, but some of my mentors for HSCT are out there making an impact. You might remember I have CIDP, and will be the 1st patient with CIDP treated in Moscow, but the process is exactly the same as my friends have already gone through for their MS.  Please see the following news reports featuring a few who have halted their MS and in a few cases eradicated even the lesions they expected to still have left. This first one is Vicki Taylor Wilson, and she is 6 months post HSCT (Moscow), in the news locally in Arkansas, USA, earlier this past week.  She has a blog, as well, and you can find that with the link here:  kickinms.com    And here is her news segment (click on her photo)

http://www.katv.com/video?autoStart=true&topVideoCatNo=default&clipId=10005453

And 2 more of my friends, one who has kicked her MS and another who will be arriving in Moscow for treatment for hers not long after I begin.  Meet the amazing Brooke Taylor Slick (left) and Diana Rees. Here is their effort to get the news out for those interested in not just maintaining their autoimmune illness, but halting its progress, curing the damage.  Again, you can click on the image to get to their video which was also shown in the USA, Pennsylvania this time.  These people are the tidal wave that will help us break the dam of information - and who will lead the way to healing MS, CIDP, and the other life-altering autoimmune illnesses that are currently making BIG Pharmaceutical companies very very rich.  CURE over maintenance!  Join the flow!

http://www.katv.com/video?autoStart=true&topVideoCatNo=default&clipId=10005453

You can read Brooke's VERY informative blog (one of the ones I relied upon as I made my mind up to go to Russia for treatment) by clicking here:

Hello Russia, B'bye MS - My HSCT in Moscow

One drop at a time, the stone dam of ignorance is being eaten away. There is not only hope, there is CURE (okay, they won't let us say 'cure' yet because we have not all gone through a whole lifetime post-HSCT to show that relapse isn't evental, but more than 10 years out, the early ones are STILL healthy - I think that's 'cure').

Just waiting in the wings here in Moscow, waiting to be ONE MORE DROP.

I want to add this list again. Not all of these are currently being treated with HSCT, but all are blood-mediated autoimmune diseases and are in line for this. If you are, love, or know anyone with these, please have hope. Please keep reading about HSCT and please make your voice heard so more can be treated sooner rather than later. We are up against the very big money 'dam' of very lucrative pharmaceutical 'maintenance', and it's killing us!

The following illnesses will surely respond to HSCT, remission isn't that far away: