Yesterday afternoon I had an appointment with a doctor in town who specializes in blood and bone marrow transplants and I was so pleasantly surprised with the whole experience. Some patients have a hard time finding supportive doctors once returning home from receiving HSCT since it is not (yet) FDA approved for autoimmune diseases, so I was hesitant going into my appointment. Right from the start I found myself surrounded by people who were excited to hear my story. “You’re the patient who went to Mexico, right? How was it?!” Everyone was so supportive and were so interested in my story and it was such a relief! I had a hematologist lined up months before I left for Mexico but while I was receiving treatment I heard from another patient here in Michigan that the doctor wasn’t going to be offering his services anymore to MS HSCT patients. Luckily I didn’t end up needing him anyone since the Mexican protocol changed no longer requiring follow up infusions of Rituximab, but it was disheartening knowing that supportive doctors back home were still hard to find and were randomly dropping patients in need.
I told my story to the doctor and multiple times he muttered “fascinating” to himself. It was so good talking to someone who understood the treatment and what would be needed for any follow ups. At the end of the appointment he wanted to run a complete blood count to check my levels and to make sure I didn’t need any neupogen (the dreaded Filgrastim) shots to boost up my numbers. I was so hoping I was done with those shots for good especially since I don’t have the amazing Dr. Lesly here to administer them! While waiting for my CBC to come back, Dave and I got to talk with some more staff all about my MS and HSCT journey and were met yet again with support and praise for doing whatever it took to stop this disease. People have told me time and time again that they wouldn’t have been able to do what I did and if I were to ask myself before my diagnosis and discovery of this treatment, I would have said the same thing that I don’t think I could do it. But when you’re faced with a lifelong progressive debilitating disease and not many good options for improving the quality of life, this decision was an easy one!
After waiting for 45 minutes my CBC came back and my numbers were right where they should be! Compared to where they were last month when I went though the desensitization for Bactrim, all of my counts have increased. Praise God!
Looks like I’m still a rockstar like I was in Mexico 😉
I was so relieved that my numbers were right on track and I didn’t need any shots or extra medications because last night we had a Parent-Child Work Night at our daughter’s preschool and I was hoping to go to it. It’s a fun night where parents get to go to class and see all of the things they do every day. I kept a warm thermos of hot chocolate with me to keep me warm (being bald really messes with your temperature and I’m constantly cold) and to also keep my hands busy holding that instead of touching anything in the classroom. It felt nice to get out and do normal things like going to a school function like that. I’ll be back to playing it safe and avoiding preschool germs until the next big thing which will likely be the holiday program and I wouldn’t miss that for the world! Dave is still doing preschool drop off in the morning and will continue to do so for the rest of the year. It’s just too risky for me to be in a crowded hallway and building filled with coughing sneezing little germ machines. I’ve been picking up Evelyn from school in the early evenings once most of the other kids have been picked up and I feel comfortable doing that.
So life is moving on and progressing as it should be! I’ll be seeing the specialist monthly so he can keep an eye on my blood counts while I recover. But for now, all is well!
Until next time, adios!!
Adios, MS! 