MS: Busting the Myths
March 16, 2022 | My Story, Treatments
People often asked me ‘what research I did’ before deciding on a stem cell transplant in Russia….
Short answer ……’nothing’.
I learnt that over the years of having this disease and my steady decline, that MS does not allow you the privilege of waiting and ‘see what happens’ scenario, so for me it was a no brainer and an easy decision, to have the treatment and halt the disease or wait for the drug companies to come up with a miracle drug?
The success rate of halting the disease was between 75-90% depending on type of MS, I put my faith into the expert doctors in Russia whom had nearly 20 years’ experience in HSCT, so it was an easy decision for me to make.
The hardest part was where to get the funds of approx $100,000.00 to have the treatment. After setting up a Givealittle page with my story, and numerous fundraising events, helped by friends, and increasing the mortgage on my property, I was able to raise the money for my son and I to travel to Moscow for the treatment where I stayed in hospital for 5 weeks and my son stayed in a hotel for the same.
On touchdown at one of Moscow’s airports, being met by a taxi organised by the hospital, picked up and taken straight to the hospital and treated as if you were royals, so friendly and welcoming that made you feel so relaxed and comfortable that you were going to be in such good hands and they were going to take such good care of you throughout the time you were there.
They became your family, from the orderlies to the kitchen staff, the administrators, the nurses to the very experienced doctors and Haematologists, everyone knew you by name and were so genuinely very caring.
Your body is pumped with pretty toxic drugs during the process, from litres of steroids to litres of Chemo and numerous other litres of drugs BUT as brutal as the process is, in a heartbeat I would do it all over again in a flash.
The improvements were instant, from no fatigue to very, very clear head (no cog fog).
I am now three years post-transplant, no relapses and have been med free ever since, pretty amazing considering Dr Federenko, my Russian Haematologist, said had I not had the transplant I would be wheelchair bound within 6 months.
I work full time in my business, and am still walking, it gave me my life back to enjoy outings with my grandchildren. Job well done.
The only regret I have about my journey is that I didn’t do it sooner, I listened to the professionals and not what my heart and body was telling me.
Stem Cell extraction. After 7 hours they had collected enough to freeze, for re-insertion.
Four days of chemo; known as vodka drips!
My son and I with our shaved heads. The nurses shaved his the same time they did mine.
A more recent picture of me.
Please take a moment to sign this petition to make aHSCT available in New Zealand, for MS patients.
Thank you.