Tag Archives: Hematopoietic stem cell transplant

Let’s Give ’em Something to Talk About

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Let’s Give ’em Something to Talk About

Well guys, it’s coming up on my 6th stem cell transplant anniversary and I’m STILL talking about HSCT whenever I get the chance.

I’ve had more than a few opportunities over the years, and most recently, I was the first Moscow veteran to be interviewed on the HSCT Warriors Podcast. It was an honor to share my Moscow experience with host, “zen” Jen, who had her transplant done in Chicago.

Whether you’re researching HSCT in Moscow, a veteran or currently receiving treatment, I encourage you to give it a listen.  There are lots of little details about the treatment, the staff, recovery, Dr. Fedorenko, and two of my “superpowers” that were invaluable during treatment and recovery. Click on the image below for direct access.

While I’ve got you here, keep an eye out for an upcoming announcement about an incredible opportunity I’ve been given to continue advocating for MSrs on a much larger scale, and directly to my target market.  It’s an unprecedented chance to share updates on the book I’m working on, speaking gigs, collaborations, and the patented mobility device I created.

DON’T MISS OUT ON ALL THE GOODNESS COMING IN 2019

IF YOU HAVEN’T ALREADY SIGNED UP FOR EMAIL UPDATES FROM ME, HERE’S YOUR CHANCE

CLICK THE LOGO BELOW!

 

The Best is Yet to Come…

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The Best is Yet to Come…

Happy New Year!!

It’s been a little over 1.5 years since my stem cell transplant and about four months since my last blog update, so, I thought it was time to pop in with a status update from one of the earlier groups of international patients to have been treated in Moscow.   I’m happy to say that there are now 100s of patients currently scheduled to receive HSCT in Moscow.  In large part, the increase in numbers can be attributed to a 60 Minutes story that aired in March, 2014, in Australia, as well as the many veterans since who have blogged their HSCT experiences to the world.  If you think that it would be difficult for one person to make a difference, imagine my surprise when I received my 2014 blog stats from WordPress.  The graphic below indicates that in 2014 my blog was viewed by people from 97 different countries.  The U.S. was #1 on the list with Australia and Norway following the lead.

blog stats map 2014

 

My 2014 Checklist – In Pictures

Below is a pictorial of tasks that I was able to accomplish during 2014, many of which I would not have been able to complete pre-transplant, or, if I could have, it would not have been without a struggle.

My Recovery Status

–  Still walking without a trekking pole 98% of the time.  Only required for rugged terrain or longer walks.

–  Still walking without a foot brace since July, 2014.  I do not foresee having to wear one again…ever.

–  By the grace of God, I have never suffered from MS-related cognitive issues.  My cerebral clarity remains untouched!!

– I do retain a degree of spasticity in my right arm, hand, fingers and foot.  See pic of right-handed spasticity below. My right hand no longer naturally extends.

hand spasticity

 

–  I still retain lack of sensation in my fingers (one thumb still intact), toes, right ear and portions of my midriff.

–  Intermittently, I will experience the MS Hug (rib cage spasticity).  I may have it for an entire week and, then, not for two months.  I may have it for a day, then, not for a week.  It’s important not to wear a tight bra or clingy shirt, as it can trigger my Hug.

–  I continue to experience a degree of imbalance that also varies, however, nothing as bad as it was pre-transplant.  I attribute a large part of my ability to walk without assistance to the improvement in balance.

–  I do continue to suffer from coldness in my right arm/hand/fingers.  It is not a 24/7 situation, but, once it gets cold, it takes hours to get warm again.

– I no longer have shooting electrical shocks running through my eyes.

– My most nagging remaining symptom is foot drop, which has decreased significantly, but worsens as they day goes on or the longer I walk.  I do my best to rest in between walking to reserve my foot strength and function.

– My three MRIs that I have had since I returned from Moscow have all been completely stable.  No MS progression (Thank you, Dr. Fedorenko).

My Outlook

My outlook and attitude will always remain positive.  That’s just my style!  On average, an HSCT patient will realize the majority of their improvements within the first 2 years following transplant, however, improvement has also been evidenced at 3-5 years.  My case was thrown a bit of a twist when it was recommended (immediately prior to beginning my HSCT) that, based on my history of failing to respond to every MS drug/treatment that I tried (Betaseron, Copaxone, Gilenya, Tysabri, Solumedrol, Ampyra), I have one year of followup chemo after my transplant.  Given that, I’m kind of the “odd man out” in that I have no other Moscow HSCT patients, nor patients from other HSCT facilities who have been pre-emptively prescribed followup chemo.

So, what’s a girl to do?  I’ll tell you.  Recovery is hard work.  I plan to continue stretching and strengthening every single day and will most likely have to do that for the rest of my life.  Fair enough.  I will continue to move…no excuses.  I will accept whatever neurologic shortcomings I have been dealt, knowing the symptoms that remain will be all I will ever have (no more guessing what MS will take next…party over, MS!).  I will continue to update via this blog as I progress with my recovery and life.  I will gently step away from the HSCT spotlight to relentlessly pursue my dreams in whatever form they may come. I will remain forever grateful for the gift of HSCT.

As always, peace and love from the Pennsylvania countryside.

Brooke