Had a relatively uneventful day but busy morning. Everything seems to start at 4:30am here… vital signs, bloodwork, early morning meds, orthostatics, shower, meeting with the transplant team at 8:45, hanging the chemo, then steroids, then rATG.
I was able to sleep on and off through a lot of the Cytoxan but did end up with some wicked nausea and a headache, with which he nurses helped me with some anyinausea meds and Tylenol.
After getting up I was so blessed to have three lovely ladies come visit me, two of whom are shortly starting the process that I am going through currently. It’s so great to have such a nice “stem family” as we call it to share our experiences. Everyone is different in their own special way, but we are all fighting for a common goal… to CURE our Multiple Sclerosis!
Tonight my last bag of meds ends at 1:15am, so I’ll be woken up by that and then the morning will begin again at 4:30! However, I am done now with the Cytoxan and will be only getting steroids and rATG. And then my Stem Cell Birthday arrives on Feb. 23rd. I am so incredibly excited!!!
So far so good! Have a great night everyone! Will try to update again tomorrow!
Yesterday I received Rituxan and tolerated it very well. Super slow easy day.
Today is one of the “heavy” chemo days, of which I have three more days like this, so a total of 4 “heavy” chemo days.
Today’s first chemo, Cytoxan, was at 11:15-1:15. Then 1000mg of steroids for an hour. And now I’m on another medication, nicknamed rabbit, rATG, which significantly reduces the number of circulating T-cells. It also makes food taste gross but I’m still eating right now. No nausea. No vomiting. No dizziness.
So far so good! Now I am going to try to get some much needed sleep!
Recapping my dates to show a timeline of my HSCT journey (and to remind myself of my dates!)
A quick review of my HSCT timeline.
I’m hoping to help give everyone an idea of time that it took for to get to where I am from that first NorthWestern email.
05/13/16: MRI showed that Tysabri was no longer working. Stopped Tysabri. No options left except Lemtrada or HSCT.
05/16/16: Called NW to ask if I could apply if I was having a relape
05/22/16: Sent initial email to NW
05/23/16: Contacted by NW to send paperwork/CDs
Waited because I got nervous and also my dad was having some bad vision problems that needed surgery.
09/07/16: Sent Paperwork and CDs to NW
09/13/16: Phone call from NW to come for evaluation.
09/20/16: Initial evaluation
09/21/16: Offered the treatment By Dr. Burt
Ty washout period was 6 months so I couldn’t start until Nov 13th at least. Also, insurance wanted more information to make their decision on whether to approve and pay for the treatment. NW had me do pre-testing early to give the insurance company more info. My insurance company paid for all the pre-testing. This was the period of time where I was fighting with insurance – HSCT was denied by Medical Mutual of Ohio and all three appeals were also denied.
12/30/16: NW calls me and suggests I apply for Part B Medicare, so I did.
01/01/17: Medicare Part B kicked in!
01/17/17: NW called with my dates
02/23/17: STEM BIRTHDAY!!!