Happy Birthday to Me!
It’s been a while since my last update but today is a special day. I feel the need to update my status, especially for the new people following my story as they educate themselves on HSCT for MS. It’s encouraging to know that new people are following my blog even two years out from my transplant!
I’ve been feeling well. As I’ve said before, my 5 MS symptoms (fatigue, heat intolerance, numbness in my forehead, ankle/foot pains, and bladder issues) have subsided since my final days in Monterrey. I had a flare of the ankle pain at the 11 month mark post transplant which lasted for about a month. I know that this sort of flare up is fairly common in the post HSCT “roller coaster” period. Going into HSCT, that roller coaster that everyone talks about was constantly on my mind. But the month long ankle pain flare was my only real experience with it. At the time, we were worried but it went away and has stayed away for the last year. Now I only have issues with my feet and ankles when I have spent too much time refereeing soccer on the weekends, which I attribute that to being 45 and not in the best shape.
In the category of “not too bright an idea”, I did end up in the ER around the 7 month post-HSCT mark. I had a fever of 100.5 F and felt really bad. My discharge instructions from Monterrey said to head to the ER for fever due to concerns for sepsis. The ER took my history seriously, and put me on a “sepsis protocol” which called for certain labs to be drawn and IV fluids given. Now the funny part: the day before was my dad’s 75th birthday and we celebrated with a party featuring a margarita machine. We spent the day drinking margaritas and very little water. I didn’t realize it at the time, but I got pretty dehydrated which likely led to the hospital trip the next day. The ER gave me 3 liters of IV fluids and, since my sepsis labs were normal, I was sent home that night feeling much better. I would advise, even 7 months out, still pay attention to hydration! Live and learn.
While down in Monterrey, we discussed with Dr Elias the best use and timing of MRI post-HSCT. I had an MRI at 6 months post that we decided would be my new baseline. That MRI was unchanged from the one prior to my treatment. I’ve since had another MRI at the 18 month mark which is also unchanged. At this point with these positive results, my neurologist has told me he thinks that there is more than a 90% chance that my HSCT treatment worked. His only concern now is how long it will last. We’ve agreed that I will see him yearly now and sooner if I have new symptoms. This is much better then my quarterly visits prior to treatment.
In my opinion, I still have MS and it is in remission. MS will always be in the back of my mind. I will always question every ache, every time I’m extra tired– is this a normal thing with being human or is this my MS? For that reason, I’ve agreed with my neurologist to have a yearly brain and C spine MRI to verify my remission. We’ve agreed that if I have no progression of symptoms, then I will get those MRI’s without contrast which is better for my health.
I can’t remember if we’ve talked about vaccines, but its recommended to get revaccinated after HSCT. The “reboot” of my immune system also means that its likely that my immune system doesn’t remember immunizations and illnesses from my childhood. I started my re-vaccination plan with my primary care doctor at 4 months after HSCT. Live vaccines aren’t recommended until 2 yrs out from HSCT, so yesterday I received my first live vaccine (MMR). I’ve already finished my hepatitis B, tetanus, Hib, pneumococcal, and polio series. I had a flu vaccine last year, as well as this year. I’m planning on getting a shingles vaccine and I will need to get a second MMR booster next month. That should do it for re-vaccination.
All in all, I’m feeling fantastic. We are busy with Brynn starting Kindergarten and all the normal busy-ness of life. I’m reminded daily of why I embarked on this journey. I was my own best advocate and health detective. I’m grateful that I found the support online through the HSCT Facebook groups and that I could have this treatment early in my MS disease. I’d highly recommend HSCT at Clinica Ruiz/Mexico to anyone considering this treatment.
I think this is it for this blog. I’ll keep an eye on comments, but you should consider “no news is good news” and I’ll probably only update here if I have new MS symptoms develop. Thanks for all the comments and support.