I stress a lot about laundry. I stress about it because I share one washer and dryer with nine families in my building. I can’t always do my laundry when it’s convenient for me. I also stress about it because I have this nightmare scenario in my head that something will happen, I’ll get admitted to the hospital again, and I won’t have any clean clothes to have anyone pick up. People I don’t know well enough to be aquainted with my underwear might have to get it from my apartment, wash it, and bring it to me. Over these past few years my brother, for example, has been in my panty drawer way more often than any brother should.
And so it was the day before Halloween this year. In Sept I was doing the best I’ve done so far post transplant. I could go into the city, or anywhere, and not worry that I wouldn’t have the stamina to do what I needed to do. I was still getting easily out of breath with stairs and hills, but I was doing great. In Oct. it seemed like there was a slow decline, so slow it was hard to notice. My spirometry would be down one day, then back up the next. I had a cough, but wasn’t sick otherwise and chalked it up my usual allergies. My cough has never completely gone away since transplant. I had some thrush too, so I figured that wasn’t helping either.
But then, right before Halloween, the bottom dropped out of my spirometry. Luckily, I happened to have a clinic appointment the next day. I brought a tooth brush and my computer to the appointment because I had a funny feeling I was going to get admitted. I hate to bring too much because I don’t want to feel like a whiny drama queen if, in fact, they don’t admit me. So far, however, every time I’ve been admitted, I knew they were going to do it.
After the usual wait, a bed was found and tests were ordered. The CT scan showed what the doc described as “gunk” in the lower part of my transplanted lung.
Infection, we thought, and so IV antibiotics and cultures were ordered.
There probably was some infection at work, but several days later I really wasn’t much better. Acute rejection was the next thought. Just as before, several days of high-dose steroids were ordered. I dreaded that because of the leg complications I had last time, but if I had to choose between breathing and walking, it was an easy choice.
After the treatment they sent me home. I wasn’t very much improved, but I went home determined to continue my exercising and puffing into various contraptions I’ve collected over the years. I was going to conquer it.
Three days later I got a surprise call from one of my transplant coordinators. A test they had ordered while I was in the hospital had come back and showed that my immune system was on to the presence of my new lung, and wasn’t happy about it. The immune system invaders were on the move, and I needed to come back into the hospital for some treatments to send them back into retreat, or even better, eradication.
At least this time I got to pack for myself. And yes, I had done some laundry, but not all. I did have to send a little bundle to my sister-in-law, but no one had to rummage through my things to gather it. Always a silver cloud right?
I underwent several rounds of an apheresis treatment. They removed A LOT – really a lot, liters and liters – of plasma from my blood. The plasma contained the antibodies we needed to get rid of. They then put the rest of the blood back in my body. They do this through a port they put into a vein in your neck with two large tubes. It doesn’t hurt. The biggest hassle is each treatment takes two hours. Did I mention they also put me on lasiks? Oh yeah, that part was fun! You cannot get up and go pee in the middle of this. There are tubes running in and out of a connection in your neck, and moving them could cause big trouble.
Unfortunately, your plasma doesn’t just contain angry antibodies after your new lung. It also contains all kinds of good stuff you still need. One of these is a blood clotting factor called Fibrinogen. My pee wasn’t just red. It looked to me like it almost turned black. Very alarming, let me tell you! Your skin often gets dry in a hospital, and suddenly the least little unconscious scratch resulted in bleeding, and not just a little that you could put a band aid on. Couple this with my underlying bleeding issues because of HPS, and well, I felt very fragile. Thankfully, as the treatments ended, the scary pee and easy bleeding returned to my normal.
When that was complete they gave me several injections of a drug that is on label as part of a cancer chemotherapy regimen, but which has been found to help with this antibody issue.
During all this I picked up another bug to add to my collection. It was a bug you usually get in hospital settings – so no mystery there really. I went home a month after the pre-Halloween admission with IV antibiotics and the help of a home health care nurse to check up that I was doing the IV correctly.
Just as before the leg numbness came back. This time, however, I knew what it was so it wasn’t so scary. It is now mid January and I am still not back to my baseline from a breathing standpoint, or a leg standpoint. That is the most frustrating part. Every time this happens, it takes months to battle back again. It’s like you’re climbing a hill, and someone gives you a little shove to roll you right back down to the bottom again.
There are, of course, a lot of other dynamics to these few months, but I wanted to finally at least post what happened. At the time I was leery to put out too much because I didn’t know a lot about what I was going through. I didn’t want to put out anything inaccurate. I may not always succeed, but I do my best. When I started to get better, there was a pile of work I needed to catch up on and blogging had to go to the side.
Now, I guess I’m back to that little panicky feeling when my laundry isn’t caught up. What if….what if that cough, that little catch-you-breath moment is the sign of something bigger. What if I need to go back into the hospital and I don’t have any clean underwear? The dread!
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