Thursday, May 07, 2020

Kidney Saga part 90

For some unknown reason I was really freaked out about yesterday's infusion.

I mean, I was genuinely scared. I don't know why. I had gone through it two times already and I knew it wouldn't be difficult. But yesterday morning I was just dreading it. I didn't want to deal with it at all. I spent the morning trying to forget it was going to happen, and failing.

The drive to the clinic was not pleasant. There was much more traffic than we've seen previously, and people were driving very fast. There was also a massive wind storm, and dust was in the air. Add in that I felt we were a little late (we weren't, I'm just paranoid that way) and I got unreasonably upset on the drive. I went into the clinic feeling like garbage.

The rheumatologist didn't change any of my meds, although she was about to add a preventative until I noted that I was already taking one. When I described the "Satan Spit" she laughed. She told me my kidneys are responding very well to the Cytoxan, so we should be done when I finish the next two infusions. She also cautioned me about the Prednisone - but I've already looked into how difficult it is to taper off the stuff so I will follow instructions. I get to go down 10mg every month until I'm off it. The infusion clinic is part of the rheumatologist's office, so after the appointment she escorted me into the infusion room.

I ended up in the same chair in the infusion room that I've taken the previous two times I went. I learned that they actually removed a bunch of chairs to enable "social distancing". That the chair removal also makes it easier for the nurses to reach patients' arms was an unexpected bonus, apparently. There was a trainee watching me get set up for infusion. She apparently was visiting from another clinic in order to learn how to use the pump that pushes the infusions into veins.

The nurse I got this time was extremely competent. She was one of those folks that the instant you saw her you knew you were in good hands and that everything would be smooth. As I was feeling crappy, it was a huge relief. And, indeed, she managed to insert the needle almost painlessly on the first try, then she knew how to speed up the saline enough to get us out of there in good time.

The nurse had a very cool sleeve tattoo on her right arm, which I complimented her on. She said as a child she told her mom that as soon as she was of legal age she was going to get a bunch of tattoos, but then waited until she was 25 and knew her own mind better. We joked about how tired I was of needles and how many needles are involved in tattoos. I admitted I'm much more a temporary tattoo kind of person, because I cannot make up my mind. I still really want to get a Prinker so I can have constant different tattoos, but it's way out of my price range, sadly.

The infusion went fairly quickly, and we headed home. Poor Eric had to wait in the car, as they aren't allowing anyone who isn't a patient into the clinic. When we got home, Inkwell was quick to chastise us for being away from him. I was exhausted and had to sit for awhile before I could make it up the stairs. The rest of the evening I mostly just rested. I went to bed fairly early, and slept ok.

This morning I feel slightly bloated, which isn't a surprise. They pumped almost my full daily allowance of liquid into me yesterday. I suspect my pee pill and laxative will be working overtime today. I do need to check my feet and legs for any sign of dropsy (you press the skin, and see if it takes more than a second for the mark, if any, to vanish). I just wish the hydration I got would translate into less thirst.

As today is Thursday, and I got blood tests done on Monday, I should be able to see the graphs of my lab tests tonight in my online chart. Then I can see for myself what sort of progress is being made. I've been very interested in looking at the charts, even though I don't totally understand what they mean as medical information. I can at least see the trends.

I'm still very tired, but every time I've had an infusion I've had a slightly different reaction, so I don't know if this will be like the last infusion when my heart healed enough that I started passing out because the medication was too strong. Or if something else will happen with a different med. It's hard to say, but I need to watch for any signs that something has changed and report it immediately if I see it. At least I didn't throw up this time.

Full Kidney Saga --- Start Here --- Kidney Wish List --- GoFundMe