Here is my email from Dr. Fedorenko…
Dear Lisa Berry,
Thank you for useful clinical information. We have analyzed your MRI. I confirm, that we may provide HSCT based in your situation.
We may provide your admission on 24-25th June 2013. I am waiting for information from you about opportunity of admission in this period.
Best wishes, Dr. D. Fedorenko
For the next 5 weeks my life will be a whirl…visa, my ticket to be booked, hotel for the first night before being transported to the hospital. I need lightweight clothes for packing and hand washing since I cannot leave to do any laundry. What do I use? A five gallon bucket! I’ll need to post pics of me doing the laundry the old fashioned way. I need yoga pants as my buddies say they are the most comfortable while hospitalized. I need a pair of crocs – and I hate crocs – ugly! But when in isolation, they can be sterilized by the nurses so easily with a spray and wiped down. I must get a new pair of glasses since my current pair is 15 years old and I will not be wearing contact lenses over there. And hide your eyes guys, but all ladies must have new undies if they are going to special places like a hospital. No need to be seen in ragged and faded ones. What else? I have no clue.
I am currently a mixed bag of excitement, nerves, tears, fear, more tears, and anticipation. There is so much unknown, and hence the fear…will it work, will I pass the intense physical one must undergo before final approval, how will I do, needles (I hate needles), drugs (drugs are good in this case), and how the heck to I communicate with nurses who speak NO english? Dr. Fedorenko speaks it beautifully, but when he is not around…oy vey!
If you have suggestions for me, please let me know! Any other rubber shoes besides crocs, fire up a shot, please. If you want to see where I am headed, Brooke Slick is currently in Russia, and began her chemo part of the process today…http://msslickdotcom.wordpress.com/
Now a tribute to my MS buddies...too many to name. WOW, you stumble and claw through every day with PPMS, are told by so many doctors, specialists, and clinical trials that there isn’t much they can do. And then, I don’t know how I did it since my brain is so MS fried, but I found a private group on Facebook of some amazing people. It is made up of those who have completed a stem cell transplant and are reaching out to help others. And there are those who are like me, seeking hope, answers and treatment. it is a grass roots group, rebels if you will. We have refused to accept the death sentence MS, the one the neurologists have given us. The drug companies, wanting to make the most money they can on “us”, keep saying this treatment is a bunch of bull, and only “their” drugs can offer help. Help in the form of delaying the inevitable – not a cure. I dare anyone to look at the results from Phases I-III trials and say otherwise! I’ll post the results of these trials tomorrow. This group gave me advice, support, and the map to Dr. Fedorenko.
My love to you all, and thank you to those who have supported me…whether in prayer, support of kind words, donations no matter the size, and by being with me on this journey called PPMS since day one.
я тебя люблю, Lisa