I’m going to start off by thanking everyone again, as I feel that I cannot thank all of you enough for all the support I have been shown.
As I mentioned in my previous post – My mother, Fay, a family friend Fiona and myself went over to India so that I could undergo Stem Cell Therapy. This is a little diary of what transpired on my trip.
We were warned that on arrival in India your senses are completely overloaded. Imagine West street in Durban, just add an additional 50% more people into the mix and that’s sort of what it’s like. Rather chaotic to say the least. We arrived at 22h30 and sat in bumper to bumper traffic for 1 and 1/2 hrs to get to the hospital. We were greeted by a building site and were extremely tired, but after some re-assurance we manage to get some sleep.
We woke up to a team of Doctors with a comprehensive schedule. The first couple of days were used for preparation and assessments. I received injections that would stimulate the growth of stem cells. I was visited by an Occupational therapist, Physiotherapist, Speech therapist, Psychiatrist, the head of Research at the Institute and a myriad of nurses attending to my every need. The team went through my history at length and I felt assured after the assessments were complete that no stone had been left unturned and that they understood every detail. The main points of focus/ weakness were my right hand which has lost fine motor skills (doing up buttons , zips, holding a pen or knife) and my right leg which is experiencing increased “foot drop”.
We had the day off on Sunday to just relax and see a bit of Mumbai.
My stem cell aspiration was scheduled for 10h15 on Tuesday and the injections for 16h15 later the same day. This is obviously a very intricate process so i hope in trying to explain it that I don’t underplay the amount of work that is involved in making it a success.
The Stem Cell Therapy or “Adult Autologous bone marrow derived Motor Neuron Cell Transplantation” process begins by being wheeled into an immaculately kept theatre. Doctor Alok Sharma and Dr Nandini take the lead in a team of about 15 personnel including a photographer who films the entire process. A local anaesthetic is administered and a size-able needle is used to punch through my hip bone into the marrow. This is where the stem cells are found. Dr Sharma aspirates approx. 100mls of marrow, they patch me up and send me back to my room.
I am given strict instructions to lie still and completely flat until they need me at 16h15. During this time, Dr Sharma and his team work to clean up the aspirated marrow and separate the stem cells form the rest. Dr Sharma told us later on that he found really healthy, good quality cells and a high quantity of them, which was fantastic news.
Part two of the procedure entailed being wheeled into the same operating theatre with the same team. No anaesthetic this time. I had to fold into a foetal position. I am nervous as I have previously had lumbar punters in RSA that have incapacitated me for a week. Dr Sharma can obviously see the concern in my saucer size eyes and re-assures me. He showed me about 20mls of white milky liquid and explained that 60% of the now “cleaned, athletic” cells will be administered into the spine between L4 and L5 and the balance into my hand and leg muscles.
True to his word, the procedure was almost painless and 20 minutes later I was back in my room under the same instructions to lie completely still until the next day.
I woke up and was pleasantly surprised to find that I was almost 100% pain free. Incredible when I think back to the lumbar punctures done in RSA. I am still encouraged to lie flat for the morning . By early afternoon I was inundated by OT, Physio, Speech therapists etc booking times for rehabilitation sessions for the last couple of days.
The sessions had a wide range, from specific hand based exercises to large core muscle rehab and these change from patient to patient as required. The Doctors told me over and over that the next 2-3 months are crucial to the success of the therapy and encouraged me to stay in a relaxed, stress free environment as possible.
We left India with optimism, a better understanding of my current position, and a renewed appreciation for what I have. But most importantly I left with a determination to ensure that the stem cells are given every chance to repair and mend the motor neurones that have become ill.
We will re-assess my progress within 90 days and then a call will be made as to whether or not I should be returning to India immediately for round 2 or if we should let some more time pass before assessing the situation again.
I will be keeping you posted on how things go.
Thank you for all your support and wishes once again.