HSCT

So for many years I’ve heard so much about all these amazing possibilities of curing MS with stem cells, but I never saw any positive evidence or heard stories from people I could possibly be in contact with that had any of the procedures done. Well back in 2o13 when I had the 2 bouts of optic neuritis I absolutely was against Gilenya, it scared me and I just was going to refuse to do it (a lot of good that did me, ha) and I thought if I look around enough I’ll find an alternative.  Well I didn’t on time (hence the reason I wound up taking yet another medicine I was going to ‘refuse’ to take). But during that time I found a couple groups online that looked like promising groups with people that had stem cell procedures done, but i didn’t ask to join because in reality… I didn’t know enough if anything about how it really worked and I thought for sure I’d have to go halfway around the world to get it done, so i didn’t want to look silly (Yes… even over a computer screen I worry about how I’ll “Look” to other people… I ummm…. have some self esteem issues? Lol) by joining.
So after the relapse I had in October on Gilenya and my neuros brought up Lemtrada (Yet…. another med. i refuse to try…. and guess what? This refusal is actually going to work! 😀 ) I thought oh no…. and I joined 2 of the groups on facebook I found in Oct/Nov.  One was Dr. Burts trial in Chicago. Close to home…. but what are the chances I’d get in? Next to nil but thought I’d go along with it and see if I even got an email back. By the way… the people in this group were so so nice… and I didn’t feel silly.  Spent days looking over the wonderful files they had and got so so much wonderful information…..
So before I go on…. what does HSCT stand for? (If anyone can keep up with me while I do this blog I’ll be amazed…. my thoughts just tend to jump around and I type as they do…. and sorry but my eyes do not like black on white scrolling… or any scrollling… lol. So I will not be editing… so i seriously do apologize… lol).  Anyways…. HSCT stands for Hematopoietic Stem Cell Transplant.  HSCT is the infusion of bone marrow or peripheral blood stem cells into a patient’s bloodstream. The stem cells then travel through the blood to the bone marrow, where they take up residence and grow a new immune system. The old immune system is destroyed with Chemotherapy before the transplantation. The process is very complicated. I will try to explain it in a less complicated way. (By the way… I took some of this from what my Aunt wrote…. seemed easier to just copy and paste and change a couple words…. hehe… <Wuv you auntie kathi!>):
First: Carina will have one dose of Chemotherapy and injections to stimulate the stem cell growth.
Second: There will be a collection of Carinas stem cells. Blood is withdrawn and circulated through a cell separating machine. Blood is returned to the body and the cells collected are frozen and stored until needed for the transplant.
Third: Chemotherapy to wipe out the existing immune system.
Fourth: Stem Cell Transplant. After high doses of chemotherapy is complete the stem cells are returned to the body.
Fifth: The new stem cells migrate to the bone marrow and over time produce new cells. Eventually they repopulate the body with immune cells.
After the transplant you stay in the hospital for approx. 1o days until you have enough cells. During the chemo and transplant you are isolated because of high risk of infection.
Ok… so that’s the jist of it…. I’ll explain more as time goes on… 😀
So back to that wonderful group. 😀 I sent off the initial e-mail… wasn’t sure if I’d even hear back. But I did! She had me fill out a paper to get some more information to see if they think it’s worth the time to go down there for evaluation. I sent that back… and I heard back again! (Wow huh? Ha). So now they wanted me to fill out a patient intake form with a lot of information on it and get my medical records and mri scans sent to them (Never was so happy to go get medical records and make phone calls in my life… heh). So I did that… and then waited…. and waited…. and waited. Sent all that out at the end of November.  Sometime around Christmas (Took so much patience to even wait that long…. sigh… I’m telling you… this patience thing…. I need to fix it! And you’ll probably hear in every single post something about my patience… 😦 ) I emailed her and then I heard back a bit later saying they got everything except mri discs. I was like say whaaaaaat?? So called here and yup… they forgot (Idk how anymore clearer I coulda made it… but hey… oh well).  So they sent them out for real that time.  Still wasn’t quite sinking in that I could actually even go down there for evaluation.  I got emails and calls from Northwestern saying yes… they would evaluate me! But that I could come down there and not qualify.  But still no date (guess it takes some time to get all your appointments in sync…. glad I don’t have that job. They are amazing… <3).  Feb. I got a call asking if one of the first 2 weeks of march was ok…. I said yes… and then waited. Emailed and bugged the nurse who deals with MS probably too much… but then finally got the call and email with my schedule… March 10th and 11th!!!!! Yaaaaaay!!!!
(Just a side note… in the future my posts will NOT… I repeat will NOT be this long… I promise!!!!)
So… going to try to shorten this up quickly (So…. another 1,000 words later this blog post will be over……)… went to Chicago. Ate at Grand Lux Cafe Monday night (It was close, I knew what it was… and I was exhausted from the drive and oooing and ahhhing over tall buildings and how I’ve never been in that part of Chicago yet. Lol) and my nerves were all over the place. Slept maybe an hour or so before we had to be up at 4:3o am for the first appointment (MRI).  So we went and got that done with (Even a couple hours away from home they still can’t find my veins…. took a trio of nurses to get the iv in. *Sigh*). Afterwords we didn’t have much time to kill before we had to be to Rush to see a different dr. So all of us on super little sleep… hopped in a taxi/cab (<— whats the difference?) and omg… that drive made me sick.  They go to fast and breaks and go and breaks and go and whoooo and ahhhhh and yikes and omg…. there and back…. not fun…. I wanted to be sick…. bad mix with my eye issues.  And that appointment…. long story shirt…. I left in tears… didn’t really want to talk to the boys…. got myself a block away…. cried… and just ugh.  He was short with me and made me feel like I was nuts and that everything i experience and what i think i have is all in my head (which LITERALLY it is!)!  But I was like whhaaaaat?  Like seriously… I wouldn’t be here if this wasn’t controlling my life…. making me miserable… wondering what my point in life is (Except for taking care of my wonderful young man). I was just like what the heck am I doing here? I was ready to just say screw it and go home and give up because I thought after that obviously the other Dr. will look at me just the same way. Nate and Max snapped me out of it kind of and talked me into going to get food. And go look around a store (I got new plates!!! :D). Still had my doubts and breakdowns the rest of the day but we stayed. The next day I got myself together the best I could… had everything ready and told myself I had to stand up for myself… not talk like with my head down and all shy like I did the day before…. and keep my eyes on the timeline I had so I didn’t get dizzy and take forever to find my place.  I was terrified. But went back there…. met the poor lady who had to get my emails…. she was super nice. Lol. Told me what to expect and what to tell Dr. when he came in. And it helped ease me. She was like an angel at that point without knowing it… and probably what ultimately got me through it. That and all the prayers from people in the group… and Dr. Burt himself. When he did walk in he was so different then I imagined. He was so nice… shook all of our hands. And I just felt at ease. Told him everything. He had me do a little walk (and by little I mean little… thank goodness as I nearly met the wall turning around), had me do some other things… and checked everything he needed so super quick and didn’t let me fall (Ha… that’s how I’ve learned to tell if i have a good dr. Hehe). Then he had me sit down… and I could cry (Happy tears of course) just thinking about how it went after that. He said although I qualify for the study he wouldn’t feel right about having me go through it (I would have a 50/50 chance of being put on an MS med or getting the transplant). I was just like oh… and after that all is a blur…. but he said he was willing to offer to treat me on a compassionate basis (NO RANDOMIZATION… no chance of being put on an MS med i already failed!)!  But he had some concerns cause of my Mommy’s history before she passed away and how she did…. and because of the PML risk…. so he told me about extra testing and we talked about my weight and the fatigue issues and how i want to exercise… and he completely understood and was just awesome….. you can tell he really wants to help! And it was just an amazing feeling!  One of the happiest moments of my life…..
We checked out after Kate came back in and gave me papers and talked and Nate remembers is all but I don’t…. but we went and got lab work done and got starbucks and hit the road.
I still cannot believe this wonderful blessing I have received…. it’s another chance at life for me. I feel like I’ve slowly been losing my life… especially the past 4 or 5 years or so.  Idk what exactly I would do being able to wake up everyday and not thing right away if my MS is going to act up and I’m going to lose my vision completely…. or walk worse then what i am… or not at all…. and tons of other worries.  There is a chance it can reverse some of the damage done…. but that would be a bonus. If I can just stop the progression I will be so happy. At this rate all I can picture is myself going downhill so fast that I wonder how many more birthdays I will see.
So that is how I got to this point…… stay tuned for more on this journey! (And shorter blogs…. *And yes i did add almost 1,ooo more words…. whoops*).
Hope ya’ll have a wonderful weekend!! (I wish I knew how to add pictures into this blog… 😦 )

~ Carina ❤