I’ve taken a few blogging days off, but I figured I would fill everyone in on my week home. First, I am so so so glad to be home. Even if I only left my house for doctors appointments and one trip to an empty Talbots to celebrate my good blood work.
I pride myself in being prepared. I don’t think anything really can prepare you for the feeling of total helplessness you have when recovering from a major body overhaul like HSCT. I’m exhausted… All the time, but barely sleep. It’s not your run of the mill exhaustion. It’s the I walk up a flight of stairs and my heart rate rises over 140 bpm exhaustion. I am literally tired from pumping blood. I am in much less pain and with the exception of today, my stomach hasn’t given me any issues. I still wouldn’t take it back. Small price to pay.
Monday, my dad and I headed over for my first blood tests. I can’t walk far, so I needed the wheelchair. I felt bad for my dad. He shouldn’t have to push me in a wheelchair. It went relavily quickly and I even got my dad to pose for a selfie (what waste makeup)
WBC: 9.9 (back to normal range!!) So don’t be afraid going out in public. Just wash your hands a lot and try to avoid “rush hour” people traffic.
Hgb: 10.0 (little low but that’s ok for now….it should get better with time….this could be why you’re tired too)
Plt: 412 (you’re above normal again….this level can bounce around at the beginning)
Electrolytes/magnesium/phosphorus all look good
Your liver enzymes were MILDLY elevated. This is not uncommon with all the medications you were on in the hospital and continue to be on at home. We will just monitor this for now. AST was 34 (normal is 10-30); ALT was 54 (normal is 6-29)
Yesterday, I went and saw my neurologist. Love her. Love that whole office, it is my hope to help others choose this path. It’s a few months of bad compared to a lifetime of uncertainty and pain. After remission, that is what I want most from this journey.
Today I woke up with a swollen gland on my left side. Immediately, I said every foul word I know. (it’s ok, I made up for it by practicing prayers with Rosie). No fever, but I know what a compromised state I am in. My body can’t fight right now. It’s exhausted from pumping what little blood I have around my body. I know this gland. It’s the drip gland. The one that turns into a cough that will never leave. I can’t get this. I’m too tire to cough. I immediately email Kaitlyn who tells me to get to a doc and ask for a rapid strep test. So, I get dressed which not only exhausts me, but causes one of the lovely post HSCT hot flashes. Of course, I don’t leave the house without makeup so….
My mom and I get to urgent care and it’s a San Antonio holiday, so you know it will be packed. I kid you not. I go in gloves, mask and an economy size bottle of Lysol stuck in my purse…. Which I could barely carry. Go in, fill out the ppw, see the doc and get a diagnosis of… Throat looks good, ears look good. Try benedryl with the Claritin. Oh. And no strep. Mind you, this entire time I am a walking sauna oh mash, head scarf and plastic gloves. Good times. I took my benedryl and my gland is still swollen. Ugh.
So only time will tell if I get sick…. In the meantime, maybe this benedryl will make me sleep.
Miss you HSCT buddies’