5 months post HSCT

It’s been five months since my stem cell transplant, my HSCT birthday and the beginning of my new life.  I’m amazed at the variety of changes that I’ve experienced.  When deciding to go for HSCT, we are often reminded that our goal must be to stop the progression of our disease.  Any improvement is a bonus.  Well, we are all hoping for that sweet bonus.  

I’m still hovering at about $80% of what I was hoping to raise for my treatment and related expenses.
I recently got 3 more donations and I want to  thank everyone again for their support.

I’m happy to report some improvements due to HSCT since my last update.  I walked up a sandy slope without assistance or holding onto anything (except a dog leash!)  I walked up three flights of stairs without holding on to the bannister.  I usually hold on for balance or actually use my arms to pull myself up.  I’ve been able to walk up stairs without using the bannister a bunch of times, but I can’t do it every day.  I’m still excited that I could do it at all!  My foot drop is less pronounced than before as well.  It was always the main cause of my trips and falls.  I’ve not fallen since before I left for Moscow! Before HSCT, I was not able turn my head and change the direction I was facing, or pivot from my hips without holding on to something or someone.  It might seem insignificant to most of you, but it has made a difference in my daily life.  I’m trying to use the rollator less inside the house.  I use it if I’m feeling wobbly or if I have to transport something from one place to another.  I’ve just completed a 30 day core workout challenge through Custom Strength Physical Fitness in Ottawa, Ontario on Facebook and learned a few new core exercises that I’ve never tried before.

I also helped a friend get the information he needs to apply for HSCT.  I’m thrilled that I was able to help him. Unfortunately, he does not qualify for Dr. Burt’s clinical trial in the US.  His latest MRI has no new lesions.  To qualify for the clinical trial, you must have new lesions. Is it crazy that we were both hoping he would have new lesions!?!?  Anyway, I wish him the best and hope he gets accepted somewhere soon.  

I was the 45th international patient to be treated in Moscow for HSCT by Dr. Fedorenko.  By now, there must be close to 100 international patients that have been treated.  Patients who get accepted are now given treatment dates in 2017.  There are hospitals in other countries with much shorter waiting lists.  Please contact me if you or a loved one has an autoimmune disease and are interested in getting more information about HSCT.

There have been many amazing improvements in walking, hiking, jogging and jumping in patients that have had HSCT.  We can not compare our improvements with others.  We all start out with various levels of disability and all recover differently.  But, it sure is encouraging to see the before and after videos!

There have been a few bumps in the road of my HSCT recovery.  I do best when my surroundings are clean and tidy.  As some of you know, my family moved to a much smaller home while I was in Moscow.  I’ve been there only a few times to help clean and get it organized.  It was important to my recovery and mental health to be in a comfortable and clean environment when I came back from Moscow.  The ocean air and beautiful breeze was also a major factor in my decision to start my recovery and PT at the beach.  Getting the ‘new’ home clean and ready for me to be comfortable to live in has been a challenge for me.  My husband, who had a heart attack last year after Thanksgiving, was having more symptoms recently.  He needed two more stents inserted for his heart to work efficiently.  I’m was home for his hospitalizations and for Thanksgiving with my family. He’s doing really well now and I’m back in Bethany to continue my physical therapy.  I’ll be moving ‘home’ for good soon.  I’m struggling to quickly get the house in reasonable shape so I can concentrate on my recovery and not excess clutter that needs to be donated!  Clutter causes me stress and I’m trying to minimize stress and maximize my ability to heal.  Lucy and Desi continue to be wonderful loving companions that always brighten my day.  Tomorrow I’m going to finally meet Brenda Lou!!!  She had HSCT in Chicago over a year ago and she’s at the beach visiting with a friend : )

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One of the last warm and sunny days on the beach.

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Sari found this treasure!

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Thanksgiving

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My new favorite of Lucy.  She was looking for a new friend : )

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Desi on look out!

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I was delighted to meet Brenda Lou at her friend’s home in Fenwick!!!
She had HSCT 14 months ago for CIPD in Chicago : )

 

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10 Comments on “5 months post HSCT”

  1. Hi,
    I have just started looking at HSCT and I am surprised to see that I have missed the boat since I have had MS for 23 years and stopped working a couple of years ago and thought there was no hope for me! I would like some advice as to what HSCT places are options or are they all the same?
    thank you for your advice,
    Frank (Melissa is my wife, she is computer literate and is listed on facebook)

    Like

    • Dear Melissa & Frank, I think we were all shocked when we first heard about HSCT. A procedure that can stop the progression of our disease exists? I’m glad you heard about it now!

      There are HSCT facilities all over the world. Each one has specific guidelines regarding which types of MS patients it treats. It depends on what type of MS you have and your EDSS level. (Mobility/disability level)

      There are many HSCT Groups on Facebook that can help you learn more about HSCT and all the facilities that offer HSCT. Each group has a file section with lots of detailed information and blogs of patients. Please message me on fb if I can help in any way. Nancy

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      Like

  2. judisjourney says:

    Nancy,
    NAs a fellow HSCTer, I celebrate your improvements! I am so happy for you. Judi

    Like

  3. Barry McArthur says:

    I have had MS for 11 years and I await a treatment date.

    I am on Tysabri but I an unable to walk unaided, so I can’t wait to get my date!!!

    Like

  4. Eddie Nash says:

    I cannot help but smile and think about how far you have come! Would it work? Would I qualify? Would people support me? So many questions. Your blog is so excellently written. And already paying it forward! The old man here feels like your one of my kids!! 🙂

    Like

    • Eddie! Thanks so much for all your help and encouragement! Another question was, “Does HSCT help people with PPMS?” It sure does! I wish it was readily available for everyone who would benefit from it! Hugs to you and Wendy!!!

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  5. Joan/Terry Rhoades says:

    thank you for the update…sounds good, considering that if you hadn’t gone through the treatment you would not be in very good shape…and what a blessing to be able to be at your place in Bethany for recovery time! Take good care and keep up the good work you are doing…YEA! for you!!! ❤

    Like

    • Joan! There is no question that my mobility is so much better now than before I had HSCT. You know how happy I was to have you and Harriet visit me in Bethany!!! You’ve both been such wonderful and supportive friends since day 1!!! xoxoxo

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      Like


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