Tag Archives: post-transplant

May14

No More Monsters, I Can Breathe Again – 5 Year Anniversary!

Posted on May 14, 2018 by brookeslick

What the…! Yes, really!

It’s finally here! My 5-year post-transplant mark has arrived!! My heart feels like it was yesterday, yet the MS part of me feels like it was decades ago. The taste of creamed corn lingering in my mouth, and Dr. Fedorenko saying “Just breathe…” as my once frozen stem cells were being reintroduced to my body will likely never vacate my memory banks. Seriously, how many MS patients around the world will get to experience this treatment that has saved so many from certain functional disability?! Damn straight, I’ll be remembering it! However, the MS part of my psyche that used to wake up to dread and uncertainty each morning has been gone since I walked out the doors of the stately facility that held me in its healing arms for a month in the spring of 2013.

As fate would have it, I’ve had the privilege of following and offering advice to a drove of patients who have followed since my stay, and, to this day, even though the facility’s program has grown to accommodate the newfound demand, the protocol, the staff, and the experience itself, have remained true to its caring, individualized, safety-minded roots. Ask any Moscow veteran and they will tell you that Dr. Fedorenko always made them feel like they were his only patient. There’s no better gift a doctor can give to his patient during such a tenuous time. The man was born to heal.

Fortunately, 1000s more MSrs have received HSCT in facilities throughout the world since I roamed the halls of Pirogov. I would love to be able to say that more patients have received the treatment because it is now a mainstream option, but that would not be the case. The largest means of public exposure regarding HSCT relies largely upon word of mouth distribution of information from veterans via blogs and social media. Then, of course, there was the 60 Minutes Australia piece that set the MS/HSCT world on fire and caused a ripple effect that continues today. Here in the US, Dr. Burt’s Chicago-based program is making strides, with some patients even having their HSCT covered by medical insurance, but it is still and may never be a first line of defense option in the US.

How I’m Doing Now…

Is my EDSS the same?

My EDSS (Expanded Disability Status Scale), which judges mobility only, is slightly lower (lower is better) than it was before transplant but can and does vary greatly dependant upon how long I’ve been walking, what type of terrain I’m walking on, and whether or not I’m tired or weak from illness. There is no magic switch that is flipped after you leave the hospital. You MUST put in the time for physical therapy! It likely took years for your body to transform into its current state. It’s important to note that physical therapy/exercise could very well be part of your routine for your lifetime. Discontinuing being active and moving your body after you’ve met your initial physical therapy goals, may not be an option if you are going to continue to remain as mobile as you can for as long as you can. And, please don’t tell me you don’t have the time or money. Have you heard of The MS Gym with over 14,000 members? It’s hands down the best free source of MS-specific rehabilitative exercise rooted in neuroplasticity available on the internet. Even 15 minutes a day is better than no minutes a day. Do you want to recover or not?!

Did my symptoms continue to improve?

My symptomatic improvements started to level out at about 3 years. My MS hug, in particular, remains dormant unless I’m fighting an infection of some type, but I used to have it 24/7 for about 4 years, so I’ll take it! My balance is still not 100%, and relies mainly upon the status of my foot drop on any given day, but is much better than before transplant. The foot brace (AFO) that I shed 4 years ago (1 year AFTER transplant) has remained in a storage bin since that time. The dexterity in my right hand is still less than stellar as well as is the strength in that hand and arm. Remember, HSCT doesn’t always “fix” everything. I’m totally cool with that. Are you?

Have I had any setbacks?

Yes. I have had 3 setbacks. My first was 2 years after transplant, and with the guidance of my neurologist and hematologist, I began my revaccination process. I had a tetanus/Diptheria injection and two days later any improvement in my foot drop had waned and I never did regain all of the prior improvement. It’s still better than before transplant, but after not having to use my trekking pole at all for months, it was definitely a blow to my ego. What would people who thought I was “all fixed” think?

My second was shingles, which I’ve had 4 times over the last 5 years. One of those bouts was on my left knee which is my good leg. The nerve damage from that outbreak traveled from my knee to my foot and has caused numbness in both of those areas. Given my history with shingles, my hematologist has recommended that I continue taking acyclovir twice a day, indefinitely. No breakouts since then.

My last and more dramatic setback really had nothing to do with HSCT, but the peripheral effect has definitely hindered my mobility. For two years in a row (2016 & 2017), I suffered from trigeminal neuralgia attacks (yes, I had glimmers of this bad boy before transplant). The necessity to take Gabapentin for this ailment greatly affected my balance and this last bout left me unable to move (literally) for about 3 months. Thank God, 3 months ago, I was finally able to have surgery for what I would consider the most painful experience of my life and I have not had any pain since. BUT, my core and overall strength I lost during that time has me starting all over from scratch with my walking and balance. Pain in my ass? Yes. Will I get over it? Hell, yes!

Have I had Triumphs?

Absolutely! Let’s start with 5 solid years of MRI scans reporting ZERO progression. Yep. That says “triumphant” to me! It’s like my scans have been frozen in time, thank you very much!

The simple act of being able to plan and dream for the future with certainty and without the chains of a progressive disease weighing you down like an anchor on your soul is the greatest triumph of all. It encompasses a large part of what we all hope for when we undergo this out-of-the-box treatment.

My biggest triumph to date took place two weeks ago, when I lived out one of my pre-transplant dreams. You see, I lived in New York City for almost ten years, but had not been back in over 27 years. If you’ve never been there before, it’s what I would consider a “walking” city. A walking city, that in the eyes of somebody with mobility deficits, looks like an obstacle course that a Marine would traverse at boot camp. Transitioning from surface to surface and sometimes within just feet of each other would have been impossible for me over the last 10 years. But, when Dr. Fedorenko’s assistant, Anastasia (aka, the Angel of Pirogov), contacted me to let me know that she was coming to New York and would love to meet me in person, there was no way I was going to say no. I knew this would be a huge test of what I could or could not accomplish independently. I was hesitantly excited. I didn’t want to slow anybody down. I didn’t want to fall in front of thousands of people. I was no longer an able-bodied 27-year-old navigating at the speed of light. I was 53, had mobility issues, and I was going to have to watch my shit or the masses of tourists would trample me like a bull at Pamplona! That never happened, but what a visual. ha ha

The 4.5 hour drive into the city was without incident. Unknowingly, I found a parking garage with an elevator to the street level. Score one for the limpy chick! I had angels watching over me the entire trip and they came in all shapes and sizes. I felt like the entire city knew I was coming back, but I was going to need a little help. The hotel, The Redbury, was very attentive with my bags, had a ramp and minimal stairs. The doorman was quick to show me how to use the “handicap” door opener button. Room service was super fast and scrumptious. The location was convenient to uptown and downtown so it was perfect! The following day, thanks to the opportunity to have a day to myself, I woke early, grabbed my two trekking poles, the secret to my navigational success, and jumped (You know I can’t jump!) in a cab to Soho, my old stomping grounds. Cobblestone streets, I got you. Hopped another cab to Bryant Park, Washington Square Park, Chelsea Market and topped off the night with a trek through Grand Central Station and then to a rooftop lounge that had a steep chrome staircase that looked like they were straight out of an 80s disco. Check, check, check, check, check! I truly was “living the dream”. Not a single trip or fall the entire time! I think it’s important to mention that I couldn’t have made this trip on my own without a very handy piece of carryon luggage with backup bag from the Travelon company that allowed me to roll all of my items around with just one hand. The lower part of the bag seen in the pic below also fits under the typical airplane seat. I used the water bottle pocket to carry my umbrella. Handy, indeed!! With my newfound confidence, I’ve already decided, my next trip will be much longer. I hope you enjoy the pics of the trip below, including a highly-coveted elevator selfie with Anastasia! 😉

Words of Wisdom from an OG of HSCT…

There are no guarantees or means to predict the amount of symptomatic improvement you may or may not experience post-transplant. If halting the disease, alone, is not enough for you, you might want to look into something else.
PLEASE, PLEASE, PLEASE LIVE during your recovery! DO NOT sit around waiting for miracles to happen or for worsening of symptoms or new symptoms to arise. STOP LIVING IN FEAR! Your mindset has huge implications on the cohesiveness of your recovery. Don’t let comparison and impatience become your own worst enemy.
RECOVERY…Because this is my personal blog, I’m going to use a verbally heavier hand than I do as an admin of the Moscow HSCT Facebook group for this topic related to recovery, so, here goes…QUIT YOUR BITCHING! When you read a million times that your symptoms may get worse for the first 3 to 6 months before they start to improve, WE MEAN IT. When we say you may feel strange sensations that you’ve never felt before like tingling or a muscle twinge, it’s normal, WE MEAN IT. When you read that you may have hot flashes for a year or more, WE MEAN IT. When we encourage you to read the list of commonly known post-transplant symptoms, WE MEAN IT. There’s no need to stress because it’s NORMAL.

What’s Next for Me?

More traveling! Now that I know I have the tools to safely navigate even the roughest of terrain, I’m going to go grab the world by the tail. Next stop is Colorado in September.
More living my purpose. I’m convinced I was graced, not cursed with this disease. I’m turning this obstacle into an opportunity to help others. Last year, I received a patent on a mobility device I created that has completely changed the way I live around my home and look forward to being able to use one in public, to travel, and to get back to living a fully engaged, independent life and sharing it with the rest of the world. As you all know, disability has no borders, so I plan on taking it international. All I need is the right company, with the same vision as I have to make it happen. Basically, the premise that being disabled doesn’t have to mean weary and stodgy. You can still be hip, cool active and stylish, but just so happen to be disabled.
More writing. Yes. I’ve already started a couple of books in my head. Don’t laugh. That’s where the magic happens. Blogging was just my playground to test my ability to share.
More mindfulness. I recently embraced meditation and it’s been a game-changer for me. I haven’t been able to sit still for 53 years. Who knew?! Thanks, Gabby Bernstein, Rebecca Campbell, and all the other spirit junkies who make this a habit I don’t want to kick…namaste!
More stepping back. Since last fall I’ve been doing my best to step away from my admin duties on FB, and any news, unless it’s related to weather. Basically, stripping away all the static that life tempts us with that keeps us from living a richer, more peaceful life.
More dream catching. Thanks to HSCT, I’ve been gifted with a brand new set of dreams. Will it be a book? Will it be speaking? Will I be traveling the world representing the mobility product I’ve created? Maybe all of the above.

Ta ta for now…

All good things must come to an end, and that’s my cue to exit one of my favorite posts in 5 years. I can’t thank you all enough (from over 70 countries) who have followed me on this journey. It’s meant everything to me. I’ll leave you with some silly pics that my daughter took in preparation for this blog post and some wise words to my MS with help from Kesha.

To my MS…
“Cause you brought the flames and you put me through hell
I had to learn how to fight for myself
And we both know all the truth I could tell
I’ll just say this is “I wish you farewell”

Peace.

Brooke

Feb12

Hello from the Other Side…of Recovery

Posted on February 12, 2016 by brookeslick

Standard

HELLO, EVERYONE! I’M ALMOST 3 YEARS POST-TRANSPLANT AND DECIDED TO WRITE A LETTER TO MY NEWLY-TRANSPLANTED SELF. PLEASE TAKE A MOMENT TO WATCH THE INTRODUCTORY VIDEO WITH A MESSAGE FROM ME, AND I HOPE YOU ENJOY READING MY “LETTER”.

**PLEASE NOTE THAT EVERYONE’S RECOVERY STORY IS DIFFERENT. THIS IS MINE.

Letter to My Newly-Transplanted Self

HEY, BROOKE! SO, YOU JUST CAME HOME FROM MOSCOW AND YOU’RE WONDERING HOW THIS IS ALL GOING TO SHAKE OUT OVER THE NEXT FEW YEARS. WELL, I’VE DECIDED I’M GOING TO GIVE YOU A PEEK INTO THE FUTURE. DON’T BE AFRAID. I WANT YOU TO KNOW THAT YOUR NEMESIS, PATIENCE, IS ABOUT TO BECOME YOUR BEST FRIEND AND THAT YOUR PROMISE TO YOURSELF TO EXPECT AND BE GRATEFUL FOR NOTHING MORE THAN HALTING YOUR DISEASE WILL BE THE GREATEST GIFT YOU COULD HAVE GIVEN HERSELF. HERE’S WHAT’S IN STORE FOR YOU IN RELATIVE CHRONOLOGICAL ORDER…

Drama

CRAZY THINGS ARE GOING TO HAPPEN TO YOUR BODY AS SOON AS YOU GET BACK TO THE U.S.. THE WEEK YOU GET HOME, YOU’LL GET A FEVER AND RASH FROM YOUR NECK TO YOUR WAIST. YOUR PCP AND DR. FEDORENKO WILL NAIL DOWN THAT IT’S A REACTION TO THE LONG-TERM USE OF THE BACTRIM YOU HAD IN MOSCOW AND THE EXTRAS HE SENT YOU HOME WITH. ONE DAY AFTER DISCONTINUING IT, YOUR FEVER AND RASH WILL BE GONE.

Honeymoon

NOW THAT YOU GOT THE DRAMA OUT OF THE WAY, YOU’RE EXHAUSTED, EXCITED, THANKFUL AND GLOWING IN ANTICIPATION OF YOUR HONEYMOON PHASE! ENJOY IT! YOURS IS ONLY GOING TO LAST ABOUT 3 MONTHS, WHEN YOUR SPASTICITY STARTS TO RETURN LITTLE BY LITTLE, BUT THIS TIME, YOU’LL TAKE THE TIME AND EFFORT TO MANAGE IT WITH STRETCHING EXERCISES THAT WILL BECOME PART OF YOUR DAILY ROUTINE…FOR LIFE. NO SHORTCUTS!

HOPEFULLY, YOU DON’T MIND A LITTLE SNOW ON YOUR HONEYMOON, BECAUSE EVERY TIME YOU CHANGE YOUR CLOTHES, IT’S GOING TO LOOK LIKE A SNOW SQUALL FROM ALL THE DRY SKIN CAUSED BY THE CHEMO YOU JUST ENDURED. IT’S ONLY GOING TO LAST FOR A COUPLE OF MONTHS, AND YOU’LL BE TOO DISTRACTED BY THE HOT FLASHES YOU ENDURE FOR THE NEXT YEAR TO CARE! YOU’LL BE REMINDED THAT CHEMO IS TOXIC! SO TOXIC THAT YOUR FINGER TIPS WILL PERIODICALLY CRACK AND BLEED. I WISH I COULD TELL YOU THIS IS GOING TO GO AWAY EVENTUALLY, BUT, YOU’RE ALMOST 3 YEARS POST-TRANSPLANT NOW AND O’KEEFE’S WORKING HANDS HAND CREAM IS A NIGHTLY BEDTIME STAPLE.

No Pain, No Gain? Physical Therapy

ALL MOSCOW HSCT VETERANS KNOW DR. FEDORENKO’S MANTRA IS GOOD FOOD, GOOD ATTITUDE AND PHYSICAL THERAPY. FOR YOU, HE PRESCRIBED BEGINNING PHYSICAL THERAPY ONE MONTH AFTER YOU RETURN HOME. I KNOW YOU CAN’T WAIT TO START. YOU FEEL BETTER AND HAVE MORE ENERGY THAN YOU HAVE IN YEARS, THE REFLEXES IN YOUR FEET AND KNEES ARE REACTING NORMALLY, AND YOU ARE SO ANXIOUS TO BE ABLE TO SAY “LOOK WHAT I CAN DO!”…NOT SO FAST.

WHEN THEY ASSESS YOU ON YOUR FIRST DAY OF THERAPY, YOU’RE GOING TO BE SHOCKED AND HUMBLED THAT YOU CAN’T EVEN GET OUT OF A CHAIR WITHOUT USING BOTH YOUR HANDS TO PUSH OFF AND WHEN THEY GIVE YOU A GENTLE SHOVE ON THE SHOULDER, YOU WILL STUMBLE BACKWARD LIKE A FRAIL 95-YEAR-OLD. DID YOU REALLY THINK YOU WERE BUILDING STRENGTH WHILE YOU WERE CONFINED TO A HOSPITAL ROOM FOR A MONTH AND WHILE YOU WERE LOCKED IN YOUR MS SUIT OF ARMOR FOR 7+ YEARS? REALLY?

YOUR PHYSICAL THERAPIST IS GOING TO SET GOALS FOR YOU AND YOU’LL COMMIT TO INVESTING AT LEAST ONE YEAR TO MEET THEM. YOU’RE GOING TO TELL YOURSELF “I BREEZED THROUGH HSCT, I’LL KNOCK THIS OUT OF THE PARK, TOO”, AND YOU DO, BUT YOU ARE GOING TO EXPERIENCE MORE PAIN, SORENESS AND HUMILIATION THAN YOU HAVE IN YOUR ENTIRE LIFE.

3 MONTHS POST-TRANSPLANT AND ONE MONTH AFTER YOUR BEGIN PT, YOU WILL BEGIN TO EXPERIENCE EXTREME JOINT PAIN. KNEES, HIPS, LOWER BACK, YOU NAME IT. IT’S GOING TO FEEL LIKE SOMEONE POURED BATTERY ACID INTO YOUR JOINTS, AND ROLLING OVER IN BED WILL REQUIRE PULLING YOURSELF INTO A FETAL POSITION AND GENTLY POSITIONING YOURSELF. YOU’RE GOING TO HAVE MOMENTS WHEN YOU WONDER IF YOU’LL EVER GET ANY RELIEF. YOU WILL. 3 MONTHS LATER, ON THANKSGIVING MORNING, YOU WILL WAKE UP AND HAVE ZERO JOINT PAIN…ZERO! YOU’LL ASK YOURSELF WHAT THE???!!, AND IT NEVER RETURNS. IN THE COMING MONTHS/YEARS, MANY OTHER VETERANS WILL EXPERIENCE THIS SAME JOINT PAIN.

THERE WILL BE A LOT OF MUSCLE PAIN INVOLVED WITH PHYSICAL THERAPY. REMEMBER WHEN YOU FIRST STARTED WALKING FUNNY AND YOUR FOOT, LEG AND HIPS STARTED TURNING OUT WHILE YOU WALKED TO KEEP YOU FROM FALLING? DO YOU REMEMBER HOW PAINFUL THAT WAS? WELL, NOW, YOU HAVE THE CHANCE TO HAVE IT ALL SHIFTED BACK INTO PLACE, BUT IT’S GOING TO MAKE YOUR PREVIOUS PAIN SEEM LIKE A WALK IN THE PARK. YOU’RE GOING TO BE PUSHED TO YOUR LIMIT, AND SOMETIMES, YOU’LL PUSH TOO HARD AND REGRESS. GOOD ADVICE WILL COME FROM AN HSCT BUDDY, KEITH. HE’S A CHIROPRACTOR FROM CANADA. HE’LL SUGGEST THAT YOU CUT YOUR ONE HOUR PT SESSIONS TO 30 MINUTES. AT FIRST, YOU’RE GOING TO FEEL LIKE THAT WOULD BE THE EASY WAY OUT, BUT, YOU’LL QUICKLY COME TO UNDERSTAND THAT MORE PAIN, DOESN’T ALWAYS MEAN MORE GAIN AND YOU WILL REACH ALL OF YOUR GOALS 5 MONTHS EARLIER THAN EXPECTED. BOOM!

YOU’LL TAKE THE ROUTINES YOU LEARNED AT PT AND BEGIN DOING THEM AT HOME. DOING THEM EVERY OTHER DAY WILL BE YOUR PLAN, BUT IT WILL BE 2 YEARS BEFORE YOU FIND THE PERFECT ALL OVER BODY WORKOUT. IT WILL COME IN THE FORM OF A HULA HOOP. YES, BROOKE. I SAID A HULA HOOP. STOP LAUGHING!

Let’s Keep This Short – Followup Chemo

3 MONTHS POST-TRANSPLANT, YOU’RE GO

ING TO BEGIN ONE YEAR OF FOLLOW-UP CHEMO, ONE EVERY THREE MONTHS, JUST AS DR. FEDORENKO HAD PRESCRIBED BEFORE YOUR HSCT BEGAN. THE GOOD NEWS IS, OVER THE NEXT 3 YEARS, ONLY A FEW MOSCOW PATIENTS WILL REQUIRE FOLLOWUP CHEMO. YOURS IS GOING TO BE MITOXANTRONE, AKA THE “BLUE DEVIL”, DUE TO ITS TOXIC NATURE. ONCE AGAIN, THE PLANETS ARE GOING TO ALIGN FOR YOU. YOU’LL BE BLESSED WITH NO SICKNESS, A FANTASTIC INFUSION CREW AND TWO SUPER COOL HEMATOLOGISTS TO MONITOR YOUR PROGRESS. DON’T GET ME WRONG, 2 DAYS AFTER EACH OF YOUR CHEMO INFUSIONS, YOU’RE GOING TO HIT A BRICK WALL. EVERY OUNCE OF ENERGY OVER EVERY INCH OF YOUR BODY WILL BE SUCKED OUT OF YOU. BLINKING WILL BE YOUR BIGGEST TASK OF THE DAY. NO WORRIES. WITHIN A WEEK, YOU’LL BE BACK IN THE SADDLE, TEARING IT UP AT PHYSICAL THERAPY. SUCK IT, MS!

Fancy Shoes

SO, GET THIS. A COUPLE OF WEEKS AFTER YOU GET HOME, YOU’RE GOING TO REALIZE THAT YOU NO LONGER NEED THE TREKKING POLE YOU’VE RELIED ON FOR THE LAST 2 YEARS. YOUR BRAIN AND YOUR BODY WILL NO LONGER CRAVE IT FOR BALANCE. YOU’LL KEEP IT IN YOUR CAR, JUST IN CASE, BUT, IN THE FUTURE, YOU’LL ONLY NEED IT FOR LONG WALKS OR UNEVEN SURFACES. BELIEVE IT OR NOT, A YEAR FROM NOW, YOU’RE GOING TO FLY SOLO, NAVIGATING THROUGH SOME VERY LONG AIRLINE TERMINALS TO DALLAS AND WON’T EVEN TAKE THE POLE. YOU’LL GET TO MEET THE ORIGINAL NINJA, AMY PETERSON, AND A HANDFUL OF YOUR SOFA SISTERS IN THE FLESH, BUT, YOU’LL STILL BE WEARING YOUR FOOT BRACE, THE ONE THAT KEEPS YOU FROM WEARING ANY OF YOUR FANCY SHOES AND BOOTS. A FEW WEEKS AFTER THAT TRIP, YOU’LL WAKE UP ONE MORNING AND DECIDE THAT YOU’VE HAD ENOUGH OF THAT FOOT BRACE. YOU’LL PUT ON YOUR SHOES WITHOUT IT AND THE NEXT TIME YOU SEE THE BRACE WILL BE A YEAR AND ½ LATER, WHEN YOU’LL FIND IT IN A STORAGE BIN, WHILE LOOKING FOR CHRISTMAS DECORATIONS, AND YOU’LL BE THANKING GOD YOU CAN WEAR CUTE SHOES AGAIN.

Stop the Train…I Want Off – Revaccination

WHAT ABOUT THOSE REVACCINATIONS?! IT’S GOING TO BE ALMOST TWO YEARS POST-TRANSPLANT WHEN YOU DECIDE YOU’RE GOING TO SUCK IT UP AND GET YOUR VACCINATION TITRES DONE. THE RESULTS SAY THAT YOUR DTAP (TETANUS/DIPHTHERIA/PERTUSSIS) VACCINATION IS NO LONGER VALID. YOU SPEAK TO YOUR HEMATOLOGIST AND NEUROLOGIST, AND DECIDE TO MOVE FORWARD WITH IT. THERE IS ABSOLUTELY NO WAY YOU COULD PREDICT WHAT WOULD HAPPEN TO YOU THE MORNING AFTER YOU HAD YOUR VACCINATION. NO WAY!

YOU’RE GOING TO WAKE UP, AND YOU’LL NOTICE HOW SORE YOUR ARM IS. YOU WON’T BE WORRIED. IT’S PAR FOR THE COURSE. IT WON’T BE UNTIL YOU STAND UP WHILE GETTING OUT OF BED THAT YOU’RE GOING TO BE TRANSPORTED BACK TO YOUR PRE-TRANSPLANT BODY. THAT’S RIGHT! YOU WILL BE CRAZY OFF BALANCE AND YOUR RIGHT FOOT WILL DROP SO MUCH THAT YOU’LL HEAR IT MAKING A SWISHING NOISE AS IT DRAGS ACROSS THE FLOOR WITH EACH STEP. AS YOU ATTEMPT TO WALK DOWN THE HALLWAY, YOU WILL FIND YOURSELF GRABBING ON TO THE WALLS AND THEN SEARCHING FOR A PIECE OF FURNITURE TO NAVIGATE THE ROOM. YOU’RE GOING TO FEEL LIKE THIS FOR A COUPLE OF WEEKS AND YOUR FOOT DROP WON’T BEGIN TO ALLEVIATE FOR SEVERAL MONTHS. ALMOST A YEAR AFTER THIS VACCINATION, YOUR FOOT WILL STILL NOT BE AS STRONG AS IT WAS BEFORE THE VACCINATION, BUT IT WILL BE BETTER THAN IT WAS PRE-TRANSPLANT. THE ONE UPSIDE TO THIS INCIDENT, IS THAT IT WILL REMIND YOU JUST HOW BAD YOUR CONDITION USED TO BE COMPARED TO AFTER TRANSPLANT. COUNT YOUR BLESSINGS!

You Say You Want a Revolution…The Russia Facebook Forum

SOON AFTER YOU RETURN FROM MOSCOW, YOUR MOSCOW COMRADE FROM HAWAII, JEFF, WITH HELP OF THE 2^ND OF THE 3 MSKETEERS, TAMMY, WILL CREATE A FACEBOOK GROUP SPECIFICALLY FOR PATIENTS SEEKING HSCT IN MOSCOW. THEY WILL ASK YOU IF YOU WANT TO BE AN ADMIN AND YOU, OF COURSE, ACCEPT. IT WILL BE SLOW GOING IN THE BEGINNING AND 9 MONTHS IN YOU’LL ONLY HAVE 100 MEMBERS, BUT, 3 MONTHS LATER, AN AUSTRALIAN WOMAN, KRISTY CRUISE, THE ONE YOU MET IN MOSCOW, DELIVERED TO THE HOSPITAL AND WHO GOT YOU HOOKED ON TIM TAMS, WILL BECOME A ROCK STAR IN THE HSCT COMMUNITY AND START A WORLDWIDE HSCT REVOLUTION WHEN HER STORY IS AIRED ON 60 MINUTES-AUSTRALIA, AFTER THEY ACCOMPANY HER TO MOSCOW FOR HER TREATMENT. HER STORY WILL OPEN THE FLOODGATES TO HSCT IN MOSCOW AND AROUND THE WORLD. NEW FACILITIES WILL OPEN. MORE FORUMS WILL BE CREATED, AND IN TWO SHORT YEARS, THE RUSSIA FORUM’S MEMBERSHIP WILL SOAR TO OVER 2,000 MEMBERS FROM ALL OVER THE WORLD. YOU AND YOUR COMRADES WILL DO EVERYTHING YOU CAN TO MAKE IT AN ORGANIZED, INFORMATIVE SANCTUARY FOR THOSE SEEKING HSCT IN MOSCOW. YOU WON’T THINK SO IN THE BEGINNING, BUT, EVENTUALLY, YOU’LL HAVE TO WALK AWAY. YOU WILL BEGIN TO SLOWLY TURN OFF NOTIFICATIONS TO ALL FORUMS EXCEPT RUSSIA. YES, THERE WILL BE MANY. THE STAMPEDE FOR HSCT, WILL BRING OUT THE BEST AND THE WORST IN PEOPLE. THE DRAMA THAT YOU WITNESS WILL WEAR YOU AND YOUR PATIENCE DOWN. LIFE AND A BUSINESS VENTURE WILL FILL YOUR DAYS AND YOU WILL ABLE TO GET BACK TO LIVING, JUST AS YOU HAD HOPED PRE-TRANSPLANT. THAT’S WHY YOU DID THIS. REMEMBER? TO GET YOUR LIFE AND YOUR FUTURE BACK. THERE WILL BE OTHER ABLE VETERANS IN THE WINGS WHO COULD MANAGE THE RUSSIA FORUM, BUT, EVEN AT ALMOST 3 YEARS OUT, YOU’LL HAVE A TOUGH TIME FINDING THE PERFECT FIT AND WILL STRUGGLE WITH LETTING GO. BUT YOU WILL…WHEN IT FEELS RIGHT.

Thank You for Being a Friend

DURING YOUR TIME IN MOSCOW, THAT LITTLE GROUP OF SOFA SISTERS (SISTERHOOD OF THE FEDORENKO ALLIANCE) THAT LISA STALLINGS MALLOY PUT TOGETHER, WILL GROW TO OVER 25 MEMBERS FROM ALL OVER THE PLANET. EVEN THOUGH YOU’LL ALWAYS HAVE A UNIQUE BOND, ALMOST ALL OF THEM WILL GO BACK TO THEIR RESPECTIVE LIVES, AND COUNTRIES, BUT, THERE ARE A FEW WITH WHOM YOU’LL BECOME VERY CLOSE. LISA, TAMMY, KRISTY, VICKI, AND TONI (WHO’S A NON-SOFA WHO HAD HER HSCT IN GERMANY) ALONG WITH A HANDFUL OF OTHERS…THEY’RE LIKE THE SISTERS YOU’VE NEVER HAD. HSCT THREW YOU IN EACH OTHER’S PATH, BUT THE SIMILAR SENSE OF HUMOR, QUICK WIT, STRENGTH AND LOYALTY THAT YOU ALL SHARE HAVE CEMENTED LIFELONG FRIENDSHIPS. YOU’LL ALWAYS BE ONE PRIVATE MESSAGE AWAY FROM A HUGE BELLY LAUGH, OR A SHOULDER TO CRY ON. YOU’D DO ANYTHING FOR EACH OTHER AND WILL STAND IN EACH OTHER’S DEFENSE, UNCONDITIONALLY. PRICELESS.

Did That Just Happen?

SPEAKING OF FRIENDS…FOR YEARS, YOU’VE BEEN MAKING EXCUSES FOR NOT BEING ABLE TO GO TO SOCIAL FUNCTIONS. YOU DIDN’T WANT TO PUT YOUR LIMPY SELF ON DISPLAY. HELL, YOU COULDN’T EVEN STAND TO SEE YOUR REFLECTION AS YOU WALKED BY A STOREFRONT. THAT COULDN’T BE YOU, COULD IT? THAT’S GOING TO CHANGE NOW, AND AFTER ALL THOSE YEARS OF ISOLATION, YOU’RE GOING TO JUMP (NOT LITERALLY) AT THE CHANCE TO GO ON A GIRLS WEEKEND TO DEEP CREEK, MD. YES, YOU’LL HAVE TO USE YOUR TREKKING POLE FOR UNEVEN SURFACES, BLAH, BLAH, BLAH, BUT WHO GIVES A DAMN! YOU WERE ABLE TO DECORATE ALL THREE STORIES OF THE RENTAL HOUSE BEFORE THE GUESTS GOT THERE, AND, THERE’S NO BLACK CLOUD OF MS PROGRESSION FOLLOWING YOU EVERY DAY.

THE BEST PART OF THIS TRIP WILL BE WHAT HAPPENS WHEN YOU RETURN HOME. YOU’LL BE PUTTING YOUR LUGGAGE AWAY AND MAKE A DISCOVERY THAT CAN CHANGE YOUR LIFE AND MILLIONS OF OTHERS, OLD AND YOUNG, WHO HAVE MOBILITY/WALKING DEFICITS. WHILE TAKING YOUR SUITCASE FROM ONE END OF THE HOUSE TO THE OTHER, YOU HAVE AN AH-HAH MOMENT AND ASK YOURSELF “DID THAT JUST HAPPEN?”. YOU’RE GOING TO SPEND THE NEXT YEAR WORKING WITH A DESIGN TEAM AND BUILDING ON THE CONCEPT, WHILE ATTEMPTING TO MAKE INROADS WITH POTENTIAL MANUFACTURERS. YOUR HOMEMADE VERSION OF THIS MOBILITY DEVICE WILL CHANGE THE WAY YOU LIVE WITHIN YOUR HOME AND WHEN IT FINALLY HITS THE MARKET, WILL CHANGE YOUR LIFE OUTSIDE THE HOME AS WELL. TRADITIONAL MOBILITY BARRIERS WILL BE BREACHED, AND YOU WILL EXPERIENCE FREEDOM YOU NEVER THOUGHT WAS WITHIN YOUR REACH. YOU ARE DETERMINED, AND SO AM I! GET READY, BECAUSE YOU’RE GOING TO MAKE SOME BOLD MOVES TO MAKE IT HAPPEN.

Shit on a Shingle(s)

DON’T FORGET TO TAKE YOUR ACYCLOVIR! DURING YOUR RECOVERY, YOU’RE GOING TO HEAR OF OTHER VETERANS WHO GET SHINGLES. THE SHINGLES VIRUS CAN APPEAR IN ANYONE WHO HAS HAD CHICKENPOX, THEN, IT CAN LIE DORMANT IN YOUR BODY FOR DECADES. IF THE VIRUS IS REACTIVATED LATER IN LIFE, WHICH IS COMMON IN PEOPLE OVER 60 OR PEOPLE WITH A COMPROMISED IMMUNE SYSTEM (YOU), IT PRESENTS IN THE FORM OF A PAINFUL, BLISTERED RASH. YOURS WILL APPEAR IN JULY, 2015, ON YOUR LOWER BACK, WHICH IS ALSO A LITTLE OVER ONE YEAR POST-FOLLOW-UP CHEMO. YOU WILL CONTAIN IT TO A 2 X 2 INCH AREA BY DOUBLING YOUR DOSE OF ACYCLOVIR UNTIL IT DISSIPATES…ABOUT TWO WEEKS. DURING THE NEXT 5 MONTHS, YOU’LL GET IT ON YOUR KNEE TWO TIMES AND YOUR FOOT ONCE. IT WON’T SURFACE ABOVE THE SKIN THE LAST 3 TIMES BECAUSE YOU WILL INSTANTLY RECOGNIZE THE TINGLING UNDERNEATH THE SKIN’S SURFACE THAT ACCOMPANIES SHINGLES. YOU’LL ATTRIBUTE THE OCCURRENCES TO STRESS COUPLED WITH AN IMMUNE SYSTEM THAT’S CONTINUING TO BUILD. LESSEN LEARNED.

Paying it Forward

IN ADDITION TO YOUR ONLINE WORK, YOU’LL HAVE AND TAKE THE OPPORTUNITY TO SPREAD THE WORD ABOUT HSCT IN NEWSPAPER ARTICLES, TELEVISION SPOTS AND SPEAKING ENGAGEMENTS. YOU’LL DONATE ANY LEFTOVER FUNDS FROM YOUR FUNDRAISING EFFORTS BACK TO THE COMMUNITIES WHO RALLIED TO SEND YOU TO MOSCOW. WHETHER IT’S A DONATION MADE TO AN INDIVIDUAL WHO WAS PARALYZED IN A CAR ACCIDENT, PAYING THE ELECTRIC BILL FOR A CANCER PATIENT IN NEED, OR BUYING A PAIR OF KINDLES FOR A YOUNG PATIENT AND HIS BROTHER AS THEY TRAVEL 2 HOURS EACH WAY FOR HIS IV INFUSIONS, THOSE FUNDS WILL FIND A PLACE WORTHY OF RECIPROCATING THE GENEROSITY YOU EXPERIENCED LEADING UP TO YOUR TRANSPLANT.

The Big Reveal

YOU KNOW HOW YOU’D GIVE ANYTHING TO PEER INTO THE FUTURE TO SEE WHERE YOU’RE AT PHYSICALLY/MENTALLY AFTER HSCT. WILL YOUR LIMP BE GONE? WILL YOUR MRIs HAVE SHOWN ANY PROGRESSION? WILL YOU STILL USE A TREKKING POLE? WILL YOUR BALANCE STILL SUCK? THE BEST ADVICE I CAN GIVE YOU OR ANY NEWLY-TRANSPLANTED PATIENT IS TO IGNORE THE RECOVERY STATISTICS!! YOU KNOW, THE ONES THAT SAY YOU WILL SEE MOST OF YOUR RECOVERY WITHIN 2 YEARS OR 3 TO 5 YEARS. YOUR RECOVERY WILL BE AS UNIQUE AS YOUR DISEASE HISTORY AND YOUR HSCT EXPERIENCE. STOP LOOKING AT THE RECOVERY TIMECLOCK, THE GRAPHS, THE CHARTS AND THE SCIENTIFIC BABBLE. SOME OF THE BEST RECOVERIES I’VE SEEN ARE FROM PEOPLE WHO WALKED AWAY FROM THE COMPUTER AND THE FORUMS, AND GOT BACK TO LIVING WITHOUT LOOKING FOR REASSURANCE FROM OUTSIDE SOURCES. PEOPLE NEED TO STOP COMPARING BECAUSE THERE ARE NO APPLES-TO-APPLES COMPARISONS WHEN IT COMES TO AUTOIMMUNE DISEASES AND YOU ARE NOT A NUMBER!

FOR YOU, THERE’S GOOD NEWS AND BAD NEWS, IF YOU EVEN WANT TO CALL IT BAD NEWS. BAD NEWS WOULD BE THAT YOUR MRIs HAVE SHOWN THAT YOUR MS HAD PROGRESSED, OR YOUR SYMPTOMS HAVE GOTTEN WORSE THAN THEY WERE PRE-TRANSPLANT. NONE OF THAT HAS HAPPENED.

YOU ARE PROGRESSION-FREE AND YOUR SYMPTOMS ARE THE SAME OR BETTER THAN THEY WERE BEFORE HSCT.
YES, YOU STILL LIMP, BUT, IT’S NOT AS PRONOUNCED AS IT WAS BEFORE AND YOU DON’T USE YOUR HIP TO LIFT YOUR FOOT. YOU USE YOUR LEG. YOUR CONTINUED FOOT DROP WILL ATTRIBUTE TO YOUR LIMP, BUT IT WILL UNPREDICTABLY COME AND GO. SUCK IT UP. YOU’RE WALKING, AREN’T YOU?
NO, YOU DON’T USE THE TREKKING POLE LIKE YOU USED TO…ONLY IF YOU ARE WALKING LONG DISTANCES OR ON UNEVEN SURFACES.
YOUR BALANCE IS NOT 100%, BUT, MUCH BETTER THAN PRE-TRANSPLANT. THOSE CORE STRENGTHENING EXERCISES YOU’VE BEEN DOING AT HULA HOOP CLASS ARE GOING TO PAY OFF. YES, I SAID HULA HOOP!
THE DEXTERITY IN YOUR RIGHT HAND IS STILL HUGELY LACKING. YOU WON’T BE LEARNING TO PLAY PIANO ANY TIME SOON OR TYPING 90 wpm LIKE YOU USED TO.
MOST IMPORTANTLY, ALL 3 OF YOUR POST-TRANSPLANT MRIs ARE PROGRESSION-FREE.

A TYPICAL DAY FOR YOU IN FEBRUARY 2016 IS WAKING UP TO PRIVATE MESSAGES FROM INDIVIDUALS IN ENGLAND, SOUTH AFRICA, CANADA, MEXICO, EGYPT, ETC., SEEKING ADVICE REGARDING HSCT. YOU ARE THEIR AMY PETERSON. BE HONORED AND HUMBLED.

THIS IS THE YEAR DR. FEDORENKO SAID YOU WOULD HAVE BEEN IN A WHEELCHAIR WITHOUT HSCT. YOU’LL BE THRILLED TO KNOW, YOU’RE STILL WALKING TALL AND YOUR FUTURE IS FULL OF ENDLESS POSSIBILITIES.

RAISE A GLASS, GIRL. YOU HAVE A LOT TO CELEBRATE! MAYBE I’LL SEE YOU AROUND SOMETIME.

RESOURCES:

RUSSIA HSCT FOR MS & AUTOIMMUNE DISEASES FACEBOOK GROUP https://www.facebook.com/groups/404629779644453/

Hello, Russia! B-bye, MS!

My HSCT in Moscow

Tag Archives: post-transplant

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