Does anyone want to play, “Is this Skittles stasis or blood in my coughed up phlegm”? No, I won’t really post that picture. Unless requested. I might be a little tweaked right now on my combination of rx prescribed appetite enhancing medication (yea, that) and cough syrup. I know I should eat only all healthy things but I might have gotten into Amira’s Easter candy.
I started a little cough on Tuesday. It wasn’t enough to mention until Wednesday. It didn’t require a visit to the hospital until Friday. The doctor started me on a z-pak “just for fun” and I laid low all weekend. Monday, I went to physical therapy and the grocery store with help and a driver. Monday night I was miserable. Still no fever so I waited it out. One of the hardest things about this illness, you know, other than the fact that it could kill me, is that every little regular human symptom needs attention. Stomach ache? CT scan! Headache? Narcotics! Sniffles? Brain swab! Cough? Chest X-ray and CT scan! Every time I am a little bit sick it is taken seriously because an infection in my body can go from nothing to critical in a matter of hours. They tell me this all the time. I think partly to scare me and it works. It also makes me not want to say anything until I have to. Today, Tuesday, I went back to the hospital because my cough is worse and not better. I was supposed to give a sample of sputum (lung mucous) but I have never learned to “hork” and instead was only able to give them a little cup of saliva. Turns out that I tested positive for Metapneumo Virus from my brain swab on Friday. They don’t actually swab my brain but they push the q-tip in until it stops and swirl it around (see picture). I have a narrow nasal cavity and it hurts! If something comes back on the CT scan there will be a procedure called a Bronchoscopy that will rinse my lungs with saline to pull out samples of all the bugs.
Amira had this croupy cough first and I was quarantined from her for 2 days then gradually came out of my room. I got sick anyway. Amira also coughed directly in a family friend’s face and he got it too and required a trip to the doctor. The big killer of patients post transplant are GVHD and infections. Short of moving into a hotel by myself for the next few months I don’t know what else I can do to prevent illness. My kids are needy. Maybe more so now than they were before. They need supervision and attention. When I get too tired and stop watching Amira does things like use her brother’s dirty sock that he left on the bathroom floor to wipe her mouth after brushing her teeth. Yes, this happened. The kids are a germfest. They are trained to wash their hands immediately when coming home but then I’ll see one of them with their fingers in their mouths. I would like to have two straight weeks where I do not have to go to the hospital at all. That hasn’t happened in close to a year. I need to stop getting sick.
Today is day 98 post transplant. My last bone marrow biopsy showed no signs of leukemia. My ALL is gone. My blood numbers are within the normal range. I’m still weak and shaky but my muscles are slowly coming back. My setbacks have all been infections because I’m still on my anti-rejection medication that inhibits my immune system. Today the doctor lowered my does to give my T-cells a fighting chance against my Metapneumo Virus infection of the lungs. Lowering this drug will also reduce my tremors and weakness. I have finished my antibiotics for C Diff so hopefully my appetite will return and my lower GI infection won’t. I was sent home with a stool sample kit just in case.
It’s hard not to get discouraged at this point. I thought I would be better than this by day 100. I know it’s all been small setbacks and everything else is going well but I’m disappointed that I still have my central line and I’m still so tired and I keep getting sick. But the nicer weather is helping and I still have time.