My adventure in Russia, staying at the AA Maximov centre, that provides Hematopoietic Stem Cell Transplant (HSCT), is over. Friday is devoted to flying to Spain and then a 3 hours 40 minutes coach journey home.
You’ll probably know that my trip to see Dr Fedorenko, Anastasia, and the incredible team was to have various medical checks and a clinical assessment. This was because both my wife Lisa and I are convinced of the value of the therapy and wondered if I could have it. Doubts existed because I have a heart condition among other medical hurdles.
So, I arrived early Monday morning to start the most intensive series of medical tests in my life. They were carried out on my brain, spine, chest, abdomen, heart, lungs, kidneys, liver, veins, blood and urine. I was MRI scanned, nuclear scanned, x-rayed, and more.
It was a busy few days that drew to a close yesterday afternoon when Dr Fedorenko came to give me the results.
On the plus side, although I have a progressive MS, the disease is not actually progressing at the moment as all the lesions are inactive. In fact, Dr F told me that the MS might not progress further but, if it does, it is likely to do so extremely slowly. He also said my age is on my side. Childhood MS is very aggressive but in older people it isn’t. Hmm, does that mean at 63 that I am an ‘older person’? Ouch! (Nudge by Lisa to remind me that I’ll be 64 in less than four weeks; thank you for the reminder sweetheart!)
On the negative side, the tests revealed that the intensive chemotherapy that is a vital part of HSCT would be an unacceptable risk for my heart. In a nutshell, HSCT is not for me or, at least, not for my heart while the MS remains inactive.
Am I disappointed? Yes, that I cannot have the treatment that I consider to be the best we have available. But No, having discovered that I have no active lesions, and being armed with the comprehensive file of results to give to my doctors as well as a list of recommendations made by Dr F himself, I feel relaxed.
Everyone who goes through the transplant procedure is presented with a New Life badge adorned by an iris flower. I saw him present these at Thursday’s birthday party. Yesterday, in a parting gesture, he thanked me for supporting HSCT and pinned one to my polo shirt.
50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.
4 thoughts on “Moscow calling – day five”
Sorry to hear the news. However, it seems that Dr. F has assured you things will be ok.
Hi Brian, I am home again now and am happy that the lesions are inactive. I have had the most exhaustive of checks and tests. At least I won’t be looking back in 10 or 20 years saying that I wished I had put myself forward from HSCT because I did.
I have been following you time in Moscow and I see its not for you, but looking on positive side the ms has slowed or stopped for now that is good news.
I wish you all the best.
We all live in hope for that magic tablet, I have myself but I know it’s a long way away.
Hi John, although HSCT is not for me, the fact that there are no active lesions is the best news I could hope for. It was a result that I was not expecting and makes me feel like I have a new life even without the transplant.