This Tuesday was my official 2 month mark of returning home. Overall my recovery so far has gone pretty well, this is not necessarily the norm however, many people have much rougher recoveries, it really is very individual. This past week hasn’t been all too eventful for me, although I did have my 2 month check-up and blood work done. I have been more vigilant at exercising every day and on most days have hit the 10,000 step mark goal I have set for myself. Nothing super impressive I know, that’s like 3 miles, but it’s a start.
Let’s get down to business and discuss the doctor’s appointment and blood work results. I did my blood work on Thursday afternoon so I’d have the results in time for my doctor’s appointment on Tuesday. I was originally expecting to get the results of the blood work on Friday morning, but for some reason the hospital lab was super fast this week and I had the results back in 2 hours for my regular blood work and then my Vitamin D results came back Friday morning. Now before I get into discussing my blood work in more detail I just want to say that having amazing blood numbers when leaving the hospital means nothing in the overall picture. Many people have a super fast isolation time, amazing numbers when leaving the hospital, and then they drop. Others have a longer isolation time, lower numbers when leaving the hospital and then their numbers massively increase. Counts can fluctuate a lot over the first year, but most tend to stay in the normal range, except the lymphocytes, they tend to slowly rise over the first year or two. But back to my numbers. My blood glucose numbers had always been slightly above the normal levels since I’ve been home from Russia, at the 2 month mark they are finally back in the normal range, still on the high-end of normal but dropping. After next month’s blood work I expect they will be back in my normal range pre-HSCT. Higher blood glucose levels are normal after HSCT just because of the steroids used during treatment and normally the numbers get back to normal within 3 months of being home.
Now onto the more important numbers. Everything is still in the normal range, minus the lymphocytes, but I don’t expect them to be in the normal range for a while. My hemoglobin and platelets levels are looking good and in the middle of the normal range. My leukocyte/WBC numbers dropped down to 4.2 (3.8-11.0 is normal range) and my lymphocyte numbers dropped to 0.58 (1.0-5.8 is normal range). Now this happening is completely normal following HSCT, your numbers can fluctuate from week to week and month to month, sometimes they can drop below the normal range as well. This is just because the body is trying to reach its new normal, which is why I’ve said before it can take 1-2 years before those numbers consistently stick in the normal range and stay fairly constant. It’s very individual and is different for everyone. My neutrophil count is 3.15 (1.9-8.0 is normal range). It dropped a bit as well compared to my last blood work. Now I will say that in all the blood work I had done pre-HSCT and even pre-MS my numbers were never super high to begin with. My leukocytes always ranged from 5.8-6.5, lymphocytes were always around 1.10, and neutrophils around 4.3-4.6. So my lymphocyte numbers were never super impressive to begin with. So will be interesting to see how the numbers end up with the new immune system. Dr. F was happy with my blood results.
Some perks, my numbers are in the right range where I am now cleared to eat fresh veggies and do most things normal people do. I’m allowed to garden, a wonderful thing for my outdoorsy self. Some things I’m not supposed to do until at least 6-12 months: vacuum, mow grass, or do other things that will create a lot of dirt. I’ll take it!
I also opted to have my Vitamin D levels tested just because I wanted to see where my numbers currently were. I’m currently at 62 ng/mL (30-80 is normal). Now when I got tested in Russia for Vitamin D before being treated my numbers were 130, so they are a little less than half then they were 3 months ago. Like many people with MS I opted to always keep my levels higher than what is considered normal. I do want my levels to be higher than what they currently are at, so I plan to keep up my 5000iu per day supplementation.
Now as for my doctor’s appointment I had on Tuesday. It wasn’t too bad. Just like the past few appointments I had with him, he had the nurse practitioner trainee with him, which I will say I don’t mind her at all. I think she will end up being a great nurse practitioner someday. She only has a month left to go in her training before she gets her certification or whatever they call it. We discussed my blood work results, what blood work I want done in the future, various things about MS and the treatment, as well as basic things done during a check-up. We decided that while I will do blood work again in a month at the 3 month mark, I won’t see him again until November unless something else comes up. If my blood work looks good in a month I also won’t be doing that again until the 6 month mark. Nurse practitioner commented about my leg tattoo again as well, she’s really quite fond of the design, so obviously I have good taste, ha!
The rest of my week was pretty uneventful. Overall I have felt pretty good. Improvements have stayed about the same, although this past week every day was super hot, most days over 100F and I have had no issues with heat intolerance at all anymore. I also have had almost normal energy levels. While I still am regaining strength and muscle and I can’t do as much as I want to, I still am happy with what I can do. As for side effects, other than a few hot flashes off and on, I really have no side effects still occurring.
I am still taking my fish oil and vitamin E to keep my blood thinner to try and help my body dissolve the clot. I assume it’s working at thinning the blood, it took my blood slightly longer to clot after my last blood draw. I always supplemented fish oil prior to HSCT, so taking it is not an unusual thing for me.
Other than that I have been doing regular things around the house and property, nothing too crazy since it’s been freaking hot outside. Over 100F every single day….does really limit what activities you can actually do outside during the day. Then the mosquitoes are so thick in the cooler hours of the day, I can’t spend much time outside then either. West Nile Virus shows up a fair bit in my area, so since that can cause issues, especially with people with compromised immune systems I’m trying to avoid being bitten.
I have been trying to do some walking every day. I managed to hit my 10,000 step goal most days this week, some days going a few thousand steps more than that, some days a little less. I’m limited on where I can actually walk at, and normally when I do go places to walk, it’s a family event so usually 1-2 miles tops. Although when we do go walking I do strap my almost 20 pound youngest child on me, so I guess that is helping me rebuild my muscle and strength as well. I do love just getting out and enjoying nature though, it’s really calming for me and is a great stress relief. I am a total outdoorsy person however and so I just love being outside in nature. I will say though I am really starting to get pissed off at Pokemon Go players, it is so annoying when you are on a peaceful walk on a park trail and idiots playing that damn game almost walk into you and are screeching loudly about how badass it is that they got some weird Pokemon creature. Put your damn phones away and enjoy nature. Ugh.
Now I don’t tend to take a lot of pictures when I am out walking, but here are a few from one of my walks this past week, taken at Centennial Park.
All in all it wasn’t a bad week, nothing too exciting which really in recovery that is a good thing. We’ll see what the next week brings, I know an exciting day trip to the mountains is one thing we are planning to do, can’t wait for that!