Amazing True Story of Jose from Netherlands who had HSCT last Christmas at Artemis in India
I’m Jose from Netherlands, I’m 59 years old, I am married to Tim, and I’m a mother of two daughters. I had Multiple Sclerosis (MSRR) EDSS 2.5.
Six months ago I underwent the HSCT treatment at Artemis Hospital, India. This is my story:The first MS shup was probably in 1987. Until 2008 my family doctor unfortunately was convinced that it was psychological. For years I had a new shup for every 10 months and I had to manage by myself without any medication. I often felt that I would become depressed and would faint from pain. Everytime after a shup I had to pull myself together and go on with my life, while others thought that I occasionally had a period of not being motivated for work. In 2009 the diagnosis of MS was finally made. At that moment I was no longer able to work. In 2010 I underwent a CCVSI operation in Belgium. That temporarily gave me relief, but unfortunately the decline continued. The progress of the MS really worried me and I worked on my recovery by exercising to build up some physical condition.
In January 2017, my Australian family gave me the idea to undergo an HSCT treatment. They told me that living with MS was not an option for the long run. At that time I had not yet seen MS patients in an advanced stage, but they had, and they said I would not be able to live with this disease.
From that moment on, I was looking out where HSCT was done and how the doctors did it. The Dutch doctors did not consider it an option because of the risk and the possible poor results. However, the various foreign scientific HSCT studies showed good results. Tim is at home the one who is reading scientific research reports regularly and he rated the reports and the results as reliable and the treatment as a good chance to stop my MS.
How I found Artemis for HSCT
A friend of us who was familiarwith medical care in India pointed out that a top hospital in India, like Artemis Hospital, really belongs to the absolute world class. There are four times more people in India than in the US. Of all those many people absolutely the best doctors and medical staff is to found in the Artemis Hospital. I did not know that then, and I was able to experience that myself later on.
In September 2017 I got medication from the pain specialist for my left dystrophic leg, which apparently did not tolerate the medication for the MS. Desperate about what I had to do, I therefore stopped all medication. The MS complaints continued to deteriorate, however, and I realized that for the most advantageous and best option to be cured I had to go to the Artemis Hospital in India, and I already had the money. In my confusion of this speedy development, I then sent much e-mail to LisWiberg to discuss a treatment as soon as possible because a next terrible shup was expected in January 2018. In my opinion, I deteriorated so fast that it was almost a must. My happy desire to be really helped very quickly was happily responded to. Exactly three months after I stopped taking the medication, I was allowed to come to Artemis in India. That meant that they were willing to accept me in December for the HSCT treatment. That I would be their only HSCT patient at the time was not a showstopper for them. It is great that they wanted to do that for me.
Christmas 2017 …..I was at Artemis
Because of Christmas-time I think that my family, acquaintances and friends have brought in more candles for me and that more has been prayed for me than for any other HSCT patient. When I think back to it, the tears of emotion and joy come to my eyes.
It was clear that HSCT was my only option to fight my MS. I had thought it over very well and I knew for sure that this was my only good chance to stop the MS. From that moment on I was convinced that I had to undergo the HSCT treatment. It just had to happen.
The procedure was not as unpleasant for me to undergo as I thought it would be. I had a lovely hospital bed and I could stay there endlessly without any problem. I felt weaker, but I also had nothing else to do than eating, drinking and taking care of myself, and going to the toilet. Weakness was therefore not a big problem.
I have been home in the Netherlands for six months.…Now
The first months were dominated by recovering as an MS patient from a heavy (chemo) HSCT, so really twice as ill. Constant recovery from Relapse Remitting I was used to, but this is a different and more vulnerable situation because I had no resistance from the chemo. I had to be very careful.
After three months I realized that during that time the high MS tension in my arms stopped and the reflexes in my arms, legs and pelvic-bottomwere normal again. And my hanging slack toe was in a normal position again. These are big improvements.
Good Bye Artemis
For the return journey and for home, we were offered everything we could possibly still use. Just like a mother giving a survival kit to the child who starts living independently for the first time. We were allowed to pick it up ourselves from now on. Exciting.
Until we were on the plane I found the return trip to the airport heavier than expected. In the cool plane it went better again.
I am feeling like standing in front of thecandy shop window of the world at my feet, able to choose what I want. I like to do a master’s study programof Psychology. However, I am still a bit too enthusiastic and I have to give myself a rest. To be able to get somewhere I have to work cautiously because the way I have to go is not that simple. I have come from far and almost stumble over my own enthusiasm. That is why I asked a young physiotherapist to coach me. We are both blank in what we will encounter and what needs to be done to get my life back on track. I try to build up activities and she indicates whether my body can still follow the pace. For both of us this is a new challenge. We do not know if it will work but it is a serious attempt.
Kind regards, José
Hospital Stay ….Interesting, Enlightening & Fun
I often thought that I was dealing with the dearest and the most competent sister. If afterwards there was another sister, I thought of her the same. It was always a superlative. We have experienced the contact with Indian culture in a different way than would have been the case during a holiday. Thanks to the many personal conversations withabout fifty people in thirty-five days, we were able to learn about the Indian culture tosome depth.
This made the hospital admission a very interesting event and also gave us some distraction. For fun, my husband went to make wax crayon drawings from Dr. Gaurav Kharya and many of the nurses. In addition to my recovery, the progress of the number of drawings was also a topic of attention and time seemed to fly during these five weeks. The department of doctor Gaurav Kharya consists of a large team with young, skilled, ambitious and enthusiastic employees. The culture is mainly one of eagerness for knowledge, perfection and genuine personal interest. Cheerful voices and noises of the young team in the hallway at the nursing desk set the mood during day and night.
Afterwards I heard from a chat-friend-patient who’s been in India after me, one nurse remembered me as the ‘frightened patient’ for injections and infusions. BUT I MADE IT SUCCESSFULLY. No doubt about that. Thank you from the bottom of my heart.
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