I learned that I had Primary Progressive MS - the kind that only 10% of the population get. Seriously??
From that day forward, I have created quite the scrapbook (aka passport) to go through more medical experiments not even a lab rat should endure. I tried daily painful injections, which I subsequently learned was just a ‘well, let’s see if this does anything’ treatment but would never work for my type.
In 2009, I went to Israel by myself to start the beginning of bone marrow stem-cell treatment then on to Greece for the infusion. I thought I had my life back for almost a year and felt NORMAL again.
Life turned on me again so in 2011 I went to California for an angioplasty procedure called CCSVI. Several more thousands of dollars later, it was shown that this treatment was unsuccessful.
I now have ONE LAST chance of escape from this miserable existence - or, at least, to hopefully halt any further progression —> HSCT: Hematopoietic stem cell transplantation, a medical procedure involving transplantation of bone marrow or other blood-forming cells.
I am currently scheduled to be at the AA Maximov hospital in Moscow, Russia on August 27, 2018. This is what my newest journey has in store for me:
1) Pre-operational examinations: This one week period is used to perform some routine tests to ensure that the patient is free of illnesses and fit enough to undergo the procedure.
2) Mobilization: Injections are given to stimulate stem cell growth in the body before they are extracted for the procedure. There is mild pain or fever which can be easily treated with mild pain killers or fever reducers. This procedure continues for 4 days (twice a day).
3) Apheresis: This process is when blood is collected and then separated into its separate parts. This is also what’s done when you donate blood. The immune cells, red blood cells, and stem cells are separated from whole blood, and while the red blood cells are returned to your body right then, the rest is frozen and stored for the infusion later on.
4) Chemotherapy: In 4 days, the immune system will be almost destroyed so that the new cells can be translated back into the body. At this stage the patient experiences discomfort due to the heavy chemotherapy as well as faces risk of infections and other immunity risks. The patient is now cared for very carefully and is not allowed to have any visitors for a while.
5) Transplant: The stem cells that were extracted earlier are not reintroduced into the body to proliferate and bring the immune system back to life. There are generally some discomforts experienced here like fever, diarrhea, nausea, cough etc.
6) Engraftment: This is the step when the body is left to rest so that the immune system rebuilds and starts learning to defend the body against foreign objects again. Blood tests will prove how well the immune system has been growing. The patient can now leave the hospital and continue their recovery at home.
7) Recovery: For a minimum of 12-18 months and up to 5 years, patients see the reversal of their MS symptoms and actually experience 45-80% of their symptoms disappear. This is how long the stem cell treatment for MS will take in order to see long term impact of the treatment.
After a 35-day stint in Russia, I should be coming back home. I have already met people online from Hamilton, Australia and Sri Lanka who will be going through this with me at the same time!
ALL OF THIS IS TO SAY (sorry!), that this treatment will cost $50,000 US plus airfare plus visas to enter AND leave Russia.
Due to the cost, I expect that I will travel and go through this treatment by myself.
I am very, very, VERY humbly begging (yes, begging) if anyone out there would consider contributing ANY amount towards my circumstances.
I WANT MY LIFE BACK!!!
- William Amadio
- Terri Snider
- The Little family
- Michael Shea
- Lori Seguin
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