It’s hard to believe that in less than 24 hours my beautiful wife and I will be on a plane heading for India, it seems I’ve been waiting for this moment for an awfully long time! I’m very happy that the time has arrived but not very happy about the time it will take to get to our destination. Our flight time to Amsterdam is over 8 hours; we have less than two hours before our next flight to Mumbai which will take over 9 hours! Once we land the clinic will be there to drive us to Pune which I’ve recently been told is over a 5 hour drive which was completely unexpected! We leave on March 26th and don’t arrive at the hospital until March 28th, that’s like two days of travel! Not including time changes, our journey will take well over 24 hours of continuous travel, that is going to be extremely hard on me but no one said this was going to be easy.
I know that my experience in India will be very different than the stem cell treatment I had in China. The stem cell transplants were spread out over 6 separate procedures and I was in the hospital for a month. The program in India is condensed into 2 procedures and only 2 weeks in the hospital. I will have the “Liberation Procedure” first and stem cells injected into my jugular veins at the same time. The next procedure is the actual stem cell transplant which is done in one operation rather than 6. In China I was given an average of 15 million stem cells each time totalling less than 100 million cells. This time I will receive 200 million stem cells but all in one shot! This is the maximum amount allowable and they will all be cultured from my own body. A vastly different approach than what I experienced in China but there will be some similarities for sure. Some of the possible side effects that have been explained to me are the same but possibly intensified. For example, in China I had to lay immobilized flat on my back for 6 hours after each transplant, that was very hard on me! Well I’m in for a shock because I must be immobilized for 48 hours after the transplant in India! I have to be lying down with my feet above my head for the entire time other than getting up for bathroom breaks and eating. I'm not too sure how this is going to work out but I’m definitely not looking forward to it! In China I had free time between treatments that allowed me to leave the hospital and go touring around, shopping etc. Not this time, I’m told that my days will be full the entire time but if I feel up to it the staff will take me out during the final days for some shopping and sight seeing. Lorelei will likely have time to experience more but in the end we are there for one purpose, to undergo medical treatment and not vacation.
Having been explained the possible side effects I know that I will have some pretty tough days. Although I got through most of my transplants in China without incident, there were some extremely uncomfortable and painful post reactions. The side effects range in duration and severity but I’m told the most critical can be post-dural-puncture headaches. I experienced this in China and looking back at my blog from the time it was extreme pain, the only time I could recall in my adult life crying from physical pain. I just pray that things don’t go down that road in India!
The headaches can be very brutal as the central nervous system (CNS) adjusts to pressure changes after cerebrospinal fluid is momentarily drained by lumbar puncture. 200 million stem cells are then injected into the spinal canal and the cerebrospinal fluid is then returned and pushes the stem cells up the spinal canal and into the brain. This creates great changes in the hydrostatic pressure of the CNS but it is impossible to know how severe the headaches will be and this can occur several hours or even several days after the lumbar puncture. At least I’ll have my honey there to console me if problems do start!
Other noted side effects will vary depending on the level of ones disability. For example, patients who are paraplegic may experience the return of rigid and spastic muscle tissue from a contractured to a flaccid state which is a normal response to the neural pathways making reconnections. One patient that I spoke with experienced this, he was used to his legs being very spastic and his knees locking so he could stand up. He was shocked post procedure when he tried standing and like a limp noodle he collapsed to the floor! I’m glad that I have stayed active exercising my muscles to avoid muscle atrophy so hopefully this transitional phase will be easier on me. It can be difficult to distinguish between side effects from the treatment and what some sceptics see as disease progression. So far in every case patients have reported that this spasticity disappears once they return home. Some patients have reported being very tired and feel they have regressed sometimes up to a month after returning home. However it is now understood that what some patients see as regression is actually the spasticity relenting as the neural pathways are being reconfigured to the brain. If certain muscles have not been used in a very long time they will need to develop muscle tone again and be able to handle the new loads as they are now available to the nervous system again. Some patients report being very tired as this goes on but it is just the body needing rest as it goes through a new nerve growth phase.
It is difficult if not impossible to know how each individual will react post procedure and results will vary. The normal period of noticeable recovery begins between 60 and 120 days post procedure. No one really knows what to expect exactly but I’ve been told to accept the fact that I will not experience straight-line recovery. The actual fact is that no one knows how I’ll react and recover, no one but God that is. Time will tell and I must be patient, stem cells have shown to have continued improvement for over a year. Again no one really knows but the cells are not like batteries, they just don’t fade away and die. It will take a lot of work on my part to reach the full potential of my recovery but of coarse I’m up for that challenge! I’ve been told that physical therapy is key to ongoing improvement, for me that means exercising my body after I recover to retrain my lost muscle and brain connections.
I’m not sure if I’ll be doing any blogs while I’m away but stay tuned for future posts and to follow my progress. In the mean time I would like to thank everyone that has been and will be praying for me, it means so much to me.