August 9, 2014 I’m still catching up from my time in Moscow!

 I’ve been back home for almost 3 weeks and all is well.  This would have been my last post before the day I left Moscow, but fatigue got the better of me! 

Wanted to share the photo of my jugular catheter insertion site.  It’s so tiny.  Everyone always sees the huge bandaged up tube, but this is how small it really it. Nothing to worry about going in or coming out!  There is mild discomfort upon insertion.  Honest!!!  The day of the photo it was just being cleaned, not coming in or out. The redness on my neck is just from the tape  and covering that is usually on top of it to keep it clean and dry.   I made the photo small so no one would look at it and faint : )

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This is Anastasia!  My last hospital payment was delayed because the banks were closed for the July 4th holiday.  Then I went into isolation.  I was not able to make the final payment until I got out of isolation.  Anastasia wheeled me through the underground tunnel and got a great cardio workout!  She was running so fast!  Here she is holding my credit card with my family photo on it : )  I got a capital one credit card with NO foreign transaction fees.  Those fees can add up!

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Now, she’s waiting for the payment to be processed.  She is smart, fun, hardworking and always so sweet and helpful!
I am not sure how everything went so smoothly before she was hired in May. She had MS and was treated by Dr. Fedorenko a little over two years ago. Now, she is healthy, happy and does everything she can to help every patient.  

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Before we even met, I asked her to translate a tribute to Dr. Fedorenko’s mentor, Dr. Andrew A. Novik.  It was a beautiful tribute, but it was all in Russian.  She and her friends translated the video so quickly! Dr. Novik first performed HSCT on MS patients in 1999.  He was a true pioneer and thought about treating patients and not just their diseases.  For over 35 years, he was able to help many patients and protect them from their inevitable fate of becoming totally disabled.  Dr. Fedorenko has the same philosophy, skills and dedication to his patients as his mentor, Dr. Novik!  He will do whatever he can to help improve the quality of life of his patients.

and she took a photo of the two of us : )

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I met a lot of really wonderful people when I moved to the 2nd floor.
In this photo:  Brett, Glenn and his wife Penny, Kris, Dr. Fedorenko popped in for the photo, my brother in law, Robert, me, Vicki, Gunn Heidi and Mark,  Vicki’s husband.  It’s hard to tell from the photo who is the patient and who is their loved one who accompanied them to Moscow.

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Glenn and his wife, Penny

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Vicki and her husband, Mark.

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Hatice and Brendan on Brendan’s New Life Birthday!

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Chad and Misha!

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Brendan the day before I left.
Gave him essentials like a few extra zip locks and all the duct tape I had left before he went to isolation!

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5 Comments on “August 9, 2014 I’m still catching up from my time in Moscow!”

  1. Susan S says:

    Hi, Nancy! I was in Bethany Beach for the first time in 20 years over July 4th weekend. Stayed in Tower Shores at a friends home – walking to the beach one day I saw a flyer with your name, picture, and brief story, tacked to the steps leading to the beach. I read it with great interest as my sister was diagnosed with MS in 2010 and is slowly losing her independence! It breaks my heart to watch this vibrant woman lose so much of herself! Anyway, I wrote down your website and have been following you with great interest! Looking so forward to hearing if you feel this has been your answer to regain your health! Has your walking improved? Do you feel you have gotten relief from fatigue, balance issues, and any other symptoms MS can cause? My sister is scheduled to leave for Santa Monica, CA in mid September to be a part of a study on another type of stem cell therapy – cells extracted from fat and reinjected in specific areas of the body. Have talked to a couple people who have had this procedure done, and even though is was not as extensive as the procedure you had done (does not include chemo or isolation), they believe they have begun to see some pretty exciting improvements! I have my fingers crossed this procedure will give my beloved sister some of her life back! I will continue to follow your progress and am sending God’s blessings and positive thoughts! Thanks so much for sharing your story of hope with so many people (and their families!) suffering from this horrible disease!

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    • My fundraising neighbors must have put up the sign that you saw July 4th weekend.
      Glad you saw it and happy you are following my blog. I’ve only been home a little over three weeks, so it’s really too early for me to have major improvements. I have not even started rehab yet.
      I am less fatigued than before HSCT. I can stand for longer and can actually take a walk now. Have not been able to take a walk for many years. I still have balance issues. Recovery will be a roller coaster. If the progression of my MS is halted, the procedure is considered a success. However, seeing the small improvements already are very encouraging for me.
      I am not familiar with the study in Santa Monica that your sister will have in September. Is it a clinical trial?
      Nancy

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      • Susan S says:

        So happy to hear of your improvements! What a miracle!! National Institutes of Health has a registered study (vs. clinical trial) by Stemgenex in California. It is an adipose stem cell study – it is participatory so those that get accepted have to pay, and each participant will be followed for a year. This type of therapy does not entail chemo – only extraction of stem cells and then re injection into specific areas of the body. As with any procedure, there are no guarantees but many people have experienced improvement. I truly believe that stem cell therapy is the hope for the future for many debilitating diseases! Sending blessings and good thoughts your way! Thanks again for being such a beacon of hope to so many!

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  2. Joan/Terry Rhoades says:

    love your posts…I assume it will be a book one day…at least!!!

    Like


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