Time seems to be not be moving quickly enough but yet like it's flying at the same time. June will be here before we know it. With that said, I was inspired by another soon to be HSCT patient to better explain my situation.
From the beginning, Russia was my number one choice of facility. They have been doing this procedure for international patients for a long time and I liked the idea of a smaller clinic (16 patients at a time, I believe. 8 of which are international) with close monitoring and care.
Russia's patient waiting list is out almost 3 years, so we originally did not think that Russia would be an option as we don't have that kind of time to wait. But I applied anyways last November. We were ecstatic to receive a transplant date with a wait of under a year!!! But this news is also a bit disconcerting.
Russia prioritizes patients based on disease aggression, lesion load, and lesion placement. Although I am still fairly functional, the behind the scenes damage paints a whole different picture and explains the reason I was able to get a transplant date more quickly. My lesion burden on both my brain and c-spine (neck) is not something to underestimate and the placement of several lesions could wreak havoc or cause extreme disability with any enlargement or new exacerbations or flare-ups.
I am currently washing off a very strong drug, Tysabri. This is a cause of concern as coming off of the drug itself has been known to cause a rebound effect that initiates a bad relapse causing more damage. Also as my disease is very aggressive, without being on any medication the chance of gaining new damage is high.
So my prayer is that during this washout period, I do not accumulate more damage or go through another terrible relapse prior to my Russia trip. To help increase those chances, my neurologist has ordered routine IV steroids. I hate them, but they are necessary. 1,000mg every 14 days. Please pray that these steroids are successful in warding off any additional damage or disease progression.
Today was steroid IV #1. 1 down, 3 more to go. Also please don't be surprised if I eventually turn into the hulk… (See pictures for the new steroid induced self-portrait ;) )
Apr 14, 2016
I couldn't be more thrilled! My appointment went really well and much better than I could've hoped for!
My neurologist is on board for the transplant, has put in several new...
Apr 14, 2016
"Today I spent the day with Ahna at the ER. This MS is awful stuff.Watching someone you love full of pain. She's not able to fully use her arms, her legs are weak, and her body shakes...
Apr 07, 2016
I was interviewed by HelpHOPELive earlier this year. One question really has inspired me to become active in advocating for this disease:
"Do you have a resolution for 2016?
This year, I am...
Apr 07, 2016
First important update: WE ARE GOING TO RUSSIA!
One of my previous posts stated that a goal of mine this year is to be more transparent. This video will hopefully give you an even closer...
Apr 07, 2016
I realize it has been awhile since I have updated anyone on this site. I am so very sorry for the static page.
For those of you wanting to follow my entire journey, follow me at...
Jan 01, 2016
“When the world says ‘Give up,’ hope whispers, ‘Try it one more time.’”
2016 is going to be the year I gain a new lease on life! This will be the year I regain all possibilities for a prosperous...
Dec 25, 2015
This year I can finally say within the realm of possibility that all I want for Christmas is a cure! And after being accepted into two facilities for HSCT, WE ARE WELL ON OUR WAY...
Dec 04, 2015
This week has been an eventful week! I received notice that I have been accepted for the stem cell transplant in both Russia and Mexico! I could not have asked for better news!