By now I had joined a Facebook group, (https://www.facebook.com/groups/149103351840242) with people from all over the world with auto-immune diseases, who have either gone through HCST or were investigating further information to do it. As the only South African doctor on the list, was the one who performed Bernard’s procedure, I got in touch with him for the contact details.
An appointment was made for 17 December and on the day Faf and I went with a certain amount of trepidation. The answer could be no and what then?
A hematologist is a specialist in hematology, the science or study of blood, blood-forming organs and blood diseases. This was the doctor needed to perform the HCST. The appointment went smooth and without hesitation it was agreed that the procedure would be performed by latest April 2015 as cancer patients received preference. I understood of course and with great excitement we left, knowing that I can take the next step.
Little did we know that it would end up being a hurry-up-and-wait game.
The first time I heard about HSCT ( Hematopioetic Stem Cell Transplant) was somewhere in 2012 when Bernard, a fellow South African with MS, underwent the procedure. I remember following his blog at the time, where he gave quite intricate details, thinking he is off his rocker to do such an invasive procedure. And here I was, considering the same.
HSCT is by no means a new procedure. It has been performed millions of times all around the world since the 1960s for treatment of cancer and has been used successfully to cure several types of autoimmune disorders since the early 1990s. The words “stem cell” in the title is actually misleading, as it is really about the chemotherapy that depletes the immune system, before it is rebuilt with one’s stem cells.
It is an expensive procedure and is not yet covered by medical aid for auto-immune conditions, as it is still very much in trial phase. From the research that I have done, it is estimated that the FDA will approve it by 2022 and I knew that I simply did not have the time to wait.
This procedure is currently the only treatment that has been scientifically verified to stop the underlying MS disease progression and for many it has given improvement of symptoms too.
Whilst I will never tell anybody with MS that they simply have to do this, I knew that for me it was the only option left.
The search began for a doctor to do it and ideas started in my head about getting the money together to be able to do it, as by all accounts, I would need around R600 000.
I’ve never spoken about my bladder issues before because I found it embarrassing. Although bladder incontinence is quite a common symptom of MS, it is not a common, comfortable conversation topic. I have had issues for such a long time that I can’t really remember when it started, but guessing if I think back to events, trips, etc., I would say it started around 2010 somewhere.
To spare you all the gory details of plans, products, incidents, money spent and more, let’s jump to 2017. I visited the urologist to have the Interstim device (a bladder pacemaker) that I had implanted in 2014, removed. Upon his question of what we are going to do for me, I replied “nothing”. I explained that I still had a bit of vanity in me and I just did not see the option of a supra-pubic catheter working for me, as the drainage bag and pipe on one’s leg, would seriously limit the outfits I would be able to wear. That is when he told me about the urostomy. For a detailed explanation you can watch this video: https://www.youtube.com/watch?v=Ain8N9AjAf4
If you know what a colostomy bag is (for poo), a urostomy is exactly the same, but it is for pee. So, in essence I now have a bag on my tummy, but the good things so far have proven to be that I have to visited the bathroom less, I can still wear what I like, I’m saving a lot of money, I can visit public places for longer and with more confidence.
So for now, very happy that I did it.
I just couldn’t wait anymore, the hematologist I had already seen in December 2014 had still not come back to me with a date, so I took matters into my own hands.
Kamin’s uncle had undergone HSCT for myeloma cancer and I asked him for the contact details of his hematologist. I sent an email, promptly received an email back, asking for a referral from my neurologist. I made an appointment with my neurologist and he agreed. A week later we sat in front of the new hematologist.
He did a check-up on me and agreed that whilst he has never treated a patient with MS, he has been following the studies and we could start soon.
He explained the whole procedure in detail and his disposition made me feel at ease and alleviated some of my fears.
We left, knowing that things just got very real!