Tuesday, April 14, 2020

Kidney Saga part 68

The treatment is working.

That was the verdict from my nephrologist yesterday. He'd just gotten the results from the blood draw, which happened about three hours before the appointment, so he was able to give me the most current information. And the treatment is definitely working. Without the side effects from the other medication we tried first. So, yeah, it's chemo - but apparently I handle the chemo better than the other stuff! He actually said the word "remission" to me, which means he thinks dialysis is no longer on the horizon. Once the kidneys are safe, then we start to get a handle on the lupus, but he seemed to think the Cytoxan is doing the trick for both right now.

He adjusted a couple of medicines, although not the cursed Prednisone yet. He wants to consult with the rheumatologist before I start to taper off the evil steroid. I would happily taper off completely as quickly as is safe, but I will listen to my doctors. My medicine load is still fairly heavy, but I'm feeling overall pretty good so I'm not going to complain. To be brutally honest, the challenge of managing the diabetes has occupied enough of my mind to make me mostly forget the hodge-podge of other drugs I'm taking to stay alive. Silver linings.

Having a doctor appointment via video call was interesting. I had to show the doctor my legs so he could check the level of inflammation. I said there was none, and he was satisfied when I did the "press test" against my foot and knee. No more dropsy. The video call had some similarities with an in-person appointment. I entered the "waiting room" and stayed there until the doctor came in. Instead of hearing someone opening a door, the light on my webcam flashed when he activated the session. I was amused. The doctor was also pleased that I thought to send my weigh-in and blood pressure logs before the meeting started, so he had all the relevant information in front of him when we started.

The blood draw was very smooth yesterday. New technician yesterday - usually it's a woman, but this time it was a guy. He did good, one try and only a slight sting. My veins are often shy, but this time it was not a problem. The drive out and back was quick, but I still feel vulnerable every time I'm outside. I think of all the "disease vectors" and how I could catch this virus, and feel mild panic. I prefer staying at home.

I did notice a horrible fatigue after getting the blood draw. I had a lot of trouble walking back to the car and was very glad to have the walker. I keep thinking I have more energy than I do, then I run out and think, "Oh, right, I'm still sick." It's strange to be feeling so good and yet not be feeling so good.


One of the side effects of my many medicines is dry mouth. It's very irritating at night, but hubby-Eric got me a sippy cup, which means I can reach over to my side table while still half-asleep, grab the cup and take a gentle swill of water to clear out my mouth at any time in the night without spilling it all over the bed because of shaky hands. I love my sippy cup. I just thought I'd mention that. In addition, it slows my drinking, so I can have water longer over the course of the day without breaking my liquid restriction. I would get a second one just for juice, too, but that seems wasteful.

I also managed to get some paperwork and calls done that needed to be handled. The result is that I feel like I was actually productive yesterday, which was nice. I was exhausted, though, and by 8pm was ready to hit the hay. I stayed up long enough to do my final insulin shot and fell deep into sleep around 9:30pm, only waking once in the night for the necessary, and then being woken by an annoyed and hungry cat at 4:45am who demanded as many stritches as I could provide while complaining that daddy wasn't feeding him - all while standing on my chest and purring as well.

Today should be boring, I hope, but I would like to get more exercise in. I will not push it; I must not overdo it and make myself sick again.

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

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