Verfasst von: melscholz | 19. April 2012

What’s happened so far…

At the end of September last year I discovered George Goss’s blog, www.themscure.blogspot.com on the internet and contacted him. I asked him a lot of questions and received answers from him straightaway.

At the same time, I did quite a bit of research about HSCT for MS on the internet, read studies, contacted others, and asked more questions. I was encouraged and enthused by what I learned and by the quality of the information available and the responses I received.

It was a huge advantage for me that I speak English and that, thanks to my father and grandfather, I have a fairly decent understanding of medical terms and concepts.

On December 6th, I had an appointment at the University of Heidelberg Clinic, where HSCT for MS has been performed very successfully twice, with a professor of neuro-oncology and a hematologist to discuss the possibility of doing HSCT there and received the OK that I had been hoping for.

Back home that evening, it only took me a little while to think it through …Do I really want to “volunteer” for chemotherapy? The answer was yes, if HSCT will give me my future back, YES, YES, YES!!!

I stopped my Tysabri (an immune suppressive medication that slows the progression of MS) I.V.s because it takes 3 months for the body to rid itself of  the remainders of the Tysabri and it is not advised to start HSCT before then.

During this 3 month waiting period I did all the preparations that were needed. Without going into detail, I can tell you that there is a lot to do to get organized for the procedure and to be away from home for 4-6 weeks. At the same time, I noticed my MS progressing more rapidly because it was no longer being slowed down by the Tysabri

The plan was to start treatment at the end of Februry/early March.  I kept pushing Heidelberg for a set date, waited for a decision from my health insurance company (although I also stressed to the Uni-Clinic that I would be willing to pay privately if insurance wouldn’t cover HSCT)  and suddenly was turned down for the treatment by e-mail. This was utterly surprising and then was no satisfactory explanation forthcoming.

I was shocked, disappointed, frustrated and angry. But after about 2 days of that, a little voice in my head piped up…”You can be angry if you want to, but it’s not going to get you anywhere.” (Smart voice, huh?)

Heidelberg was out, I had to accept that and then began to look for alternatives. It’s just not that easy yet…

In the US, successful, promising studies are being done on HSCT for MS, primarily by Dr. Richard Burt at Northwestern University in Chicago. However, one of the criteria is relapsing-remitting MS, which I don’t have anymore, I have secondary progressive.

In Canada, the clinic only accepts Canadian citizens,

in Australia, the clinic only accepts Australian citizens,

in Sweden, the clinic only accept Swedish or Norwegian citizens.

I probably would have been accepted at a clinic in India but didn’t want to go there for various reasons.

Professor Shimon Slavin heads a clinic in Tel Aviv, Israel, which performs stem cell transplants for cancer patients and various auto immune diseases, among them MS. He has been working in the field of HSCT since the 1980s and worked at the National Institute of Health at the same time as Dr. Burt. Professor Slavin has developed a more gentle method of ablating the immune system, known as RIC (reduced intensity conditioning) which is the protocol which is also used by Dr. Burt in his studies at Northwestern.

In any case, Prof. Slavin has reviewed my reports, MRIs, etc. and will do HSCT for me in Tel Aviv starting early May.

The transplant will take a total of 5-6 weeks. My incredibly wonderful friend Sonja, will come with me for the first two weeks, then my incredibly wonderful mother will fly over from the US and stay with me until I am released and then we’ll fly back to Germany together where she’ll stay for a few days until I get my feet back on the ground.

It means so much to me that Sonja and my mother will be coming with me. On one hand that means I won’t have to worry about organizational stuff but more than that, I’ll have someone there to share it all with and to lean on when there’s a tough day. There will be a few of those, I’m sure, but I see it as a tunnel and am looking forward to the light on the other end!

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Responses

  1. Good luck, will we be seeing you at dianas breakfast in the morning? Elaine

  2. I started to read through your blogs today. I love the mood (determination, love of life, strong hope, knowledge…). I may not express myself very well in English but I think the best thing is to have friends and relatives by our side in hard times. You’re blessed with that. I hope I can throw myself into the hands of Pro. Slavin and Dr. Nadir too. Love, Dao.

    • Thanks, Dao. I hope you can beat your MS soon, too!


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