Wednesday, March 25, 2020

Kidney Saga part 50

Life is never easy, and St. Patrick's Day 2020 was not an easy day. Eric managed to get a glucose monitor, but it didn't work. It just didn't work. And it was too late in the day to call the support number to find out why it didn't work. So I was in frustrated tears much of the evening, sitting on the floor, trying to sort out my medications.

I slept on the couch, and slept fairly soundly for all that had happened. After being in the hospital, a quiet couch with a cat silently guarding you is practically heaven.

In order to solve the glucose monitor problem, Eric took me to Rite-Aid to talk with the pharmacist there. He was a pro, and managed to find one that worked. Turns out my blood count was low... due to the cytoxan. The cheaper monitor couldn't detect it. As this is going to be an ongoing problem with me taking six doses of cytoxan over the next 12 weeks (if all goes to plan), I suppose we're stuck with the more expensive model.

After getting home, I started looking at meal planning, and having a horrible time with it as usual. I wanted to get online and look for sample menus, but I was afraid I couldn't make it upstairs. Finally I sort of cracked and begged Eric to help me up the stairs. It was not easy, but we made it, and my relief was extreme. My own bed, a shower, equipment to help me get up from the toilet - ah, so much better!

And access to my laptop, which allowed me to start looking at options for food. Yeah, I got a little food obsessed. They fed me well at the hospital, but I need to eat healthy in order to get healthy, so I needed some guidance. With the situation as it is, getting a me dietitian isn't going to be the highest priority of the health system.

Inkwell was happy once I got into my own bed. He gave me plenty of purr therapy, even insisting on climbing on me almost before I could pull covers over me. At times he would stay on my chest for quite some time, just purring. He clearly wanted to heal me.

Inkwell was also more than a little spooked by the walker. He wasn't sure why I was using it, and seemed more than a little worried about it attacking him. Although other times he looked like he wanted to just play with it. He swatted at it a couple of times, but seemed to realize that wasn't safe for me, so stopped.

On the 19th I had a follow-up appointment with the cardiologist, who was stunned at my weight loss and told me about losing 13 liters of water weight just in the catheter while at the hospital. She said the hospital itself did not weigh me at all while I was there. It was not a stat they included on my vitals. She was a bit peeved at the hospital for pushing me out so quickly, but overall, the appointment was quick. She said she would try to set up a "phone visit" with a dietitian, but things were a bit chaotic. She said they would eventually be moving to video conferences, but it was taking time to set up.

On Friday, March 20th, I pretty much fell apart. I counted the diabetes supplies and realized I would run out the next day of syringes for the short-acting insulin and pens for the long-acting insulin. So I called the pharmacy and learned the insurance was holding up the pens. I called the insurance and they told me to call my primary care provider. At the same time, I was having massive mood swings and crying jags, which made it very hard to talk to various people. The nurse at my PCP was very calming, and took heroic efforts to get me pens instead of syringes for the long-acting insulin. I owe her a lot. In retrospect, I think I could have managed the syringes, but I was so scared and confused that I was practically hysterical in the classic sense.

We did manage to get both pens and syringes, so I am able to treat myself for the disease. But for awhile it seemed like it wasnt going to happen. The system is not kind nor fair to diabetics.

To be continued...

Full Kidney Saga --- Kidney Wish List --- GoFundMe