Friday, April 4, 2014

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 

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