12 Month update:
Thank you to the thousands that have followed my
progress for the past year. I want to
close the loop with an update 12 months post-transplant. This community is
strong and growing and we rely on the knowledge and experience of others to
shape our strategies in our collective attempt to find relief from the effects
of MS and all other demyelinating and autoimmune diseases.
It is clear that 12 months past my "stem
cell birthday" I have not achieved the desired results to either obtain
some improvement in preexisting physical deficit or even to control progression
of the disease. Dr. Richard Burt was forthright before treatment that my
condition was not optimal for success based on his experience but he was
willing to perform the transplant if I so desired. Like all of you on the front
end of HSCT, I believed all I needed was an acceptance and I would definitely
prove him wrong and achieve the success I sought. That didn't work out the way
I planned.
Shortly after my arrival home from my on and off
8 weeks in Chicago I felt a new symptom. I had experienced L'hermittes sign intermittently
since diagnosis but for the past few years I had been free of any serious pain
from the electricity exploding down my legs straight to my toes. However, the
first Saturday after I arrived home sitting at the kitchen table I moved my
head in a normal direction and there it was painful electicity escaping my
spinal cord and lighting up my right leg with intense pain. To say the least I
was surprised. I immediately embarked on a
Google search to look for an answer.
Google actually said high dose chemotherapy could cause this symptom.
The symptoms were present most days thereafter but usually dissipated by early
afternoon. I experienced 6-8 per day and while inconvenient and painful they
were not overwhelming. Unfortunately, 12 months later the L'hermittes occurs in
my right leg every 6-8 steps. In the past month it has begun in my left leg as
well. This too has started slow and intermittently and hopefully won't progress
to the extent of my right leg.
To summarize my condition after one year, the
rapid progression I have experienced since stopping Tysabri in May 2011 has not
subsided. Except for a brief reprieve of symptoms and progression after HSCT
due to eliminating my T and B lymphocyte count, my MS is more progressive than
ever.
The intent of this final update to the HSCT blog
is not a woe is me narrative. For sure my physical condition is poor and deteriorating
rapidly. The poor strength in my legs have me full time using a cane and
sometimes two and I can barely walk 15-20 feet before needing to rest. I was
fitted earlier this week for a power wheelchair to get me to and from work and
allow me to get around my office without my employees staring at me with
disbelief and worrying for my safety from falling which I do a few times per
week. A power chair will also allow me to get down to the gym to workout in my
office building without suffering anxiety about not being able to walk out to
my car to get home after a brief workout.
The fatigue in general is difficult and effects
walking, writing and holding items.
Dressing is a real chore especially buttons which usually take 5-10
minutes to complete one at a time. MS
progression has real impact on all personal relationships. My paralysis is
happening too fast to even contemplate or understand so it hasn't really had a
major impact on my emotional state.
I read a lot these days favoring non-fiction. I
just finished a great book called Abundance by Dr. Peter Diamandis. This piece
is a fascinating description of the progress our civilization has made in the
past 100 years particularly in areas of health, energy and poverty. This book
gave me great strength to reinforce my strong belief in how very lucky I am to
have had the life, love and relationships that God has blessed me with. Diamandis
reports that each year almost 2 million children die due to diarrhea caused
from contaminated drinking water. These children are mostly from sub-saharan
Africa and I guarantee none of them have ever been to Disney World or enjoyed the
privilege of a formal education and countless other blessings God has granted me.
If this all ends today (and I hope it doesn't) I have been luckier than 99.9%
of all that came before me on God's green earth. This disease is bad and life
altering but I am proud of my achievements and have enjoyed life more than most
have even had the chance. I have 2 great kids, I am a CEO of a corporation and I finally bought a beautiful house. I achieved the American dream!!!
Many are wondering how do I feel about HSCT for
MS. Would I do it again? The answer is, I feel great that this option is
available for so many suffering from MS and the dozens of other autoimmune
diseases it helps. This treatment undoubtedly works for most if performed in
the early stages of their disease. Many people I respect believe in their heart
it's effective for more than those in the earlier stage of their disease but
I'm not convinced. I was fortunate to be accepted and treated by a pioneer in
this treatment and he's convinced it does not work for those in the progressive
stages of MS. I believe him. I am sorry I followed my heart and not my head and
received treatment for what I knew was progressive disease.
Having received Cytoxan during treatment has
excluded me from a treatment clinical trial designed to treat my progressive
disease and it also has made my return to Tysabri more risky to develop PML. I
am NOT sorry I took an aggressive approach to managing my disease and if it
worked I obviously would be writing a very different post, but it did not. The odds
were significantly against me and at a minimum I should have pursued a full
myeloablative protocol. There were good reasons why Dr. Burt and Chicago made
sense for me, and the $200k Dr. Burt brought to Northwestern University hospital
for my treatment is a very good reason for him to have accepted me.
So what's next? I continue to scour the Internet
looking for emerging treatments. In my heart I KNOW within the next 10 years
one or many treatments will be on the market to assist the body to develop oligodendrocyte
progenitor cells and ultimately regrow myelin to cover the stripped nerves
damaged through years of persistent attacks to my CNS. What number of my axons
will still be firing to take advantage of these treatments is to be determined.
I do all I can to keep myself in condition for the long haul. I don't drink or
smoke and I have eaten more raw vegetables, seeds, nuts and fruits in the past
year than I did in my first 42 years combined.
I have tried many treatment modalities to manage
my symptoms such as acupuncture, massage, trigger point therapy, rolfing,
chiropractic care, applied kinesiology and sacro-cranial therapy. I see a nutritionist to manage the 2 dozen
vitamins and minerals I take each day.
To all of you on the front end of your journey to
and through HSCT I wish you the best. Be
smart and understand the science, treatment protocol differences and thoroughly
evaluate the incredible impact this procedure will have on you and your family.
To good health!
Kevin
