Busy toeday

I woke in the middle of the night from hitting my knee on the back of my chair bed. It startled me, and I didn’t know where I was, so I freaked out for a bit! I must have hit my foot on something as well. You OGs might remember I had both my big toenails permanently removed while we were here in the transplant days. Long story short, I’ve had a small piece that has repeatedly grown back on my left foot. I must have knocked it pretty hard; it was about to come off from the root. I was just going to pull it myself, but I got an appointment with a podiatrist in the afternoon to have it removed and deadened again. I loathe coming up with post titles; I always have. I told Amanda the title for today; she thinks I’m an idiot, and it’s too corny!

The cardiologist was rounding a little earlier today. They had the biopsy results. Our doctor was right; the results weren’t improved. They were actually worse. The initial biopsy showed a zero; after later stains came back, it was increased to a level 1 AMR. This biopsy shows a 2 AMR without the later stains even back.

They are still awaiting approval for the new “big gun” medicine from the insurance and the hospital. It seemed the big gun is a big pain in the you know what, according to the cardiologist. He kept making snide comments about “the powers that be,” speaking of hospital administration. He said she would need to be moved back to the ICU while taking that medication. We asked for a time frame since our cardiologist had said four treatments over a month. He said she wouldn’t be in the hospital that long, but I wish our doctor would come by to get the plan’s broader picture.

I like the ICU better anyway, but all I was thinking about was moving all our crap back. I started packing stuff that could go to the Yukon immediately. They said it would be tomorrow or the next day, but I still wanted to be ready. Amanda wanted a shower before we left, so she asked for a setup, towels, a gown, and new sheets. It took them forever to get things. They were going to start a different “mab” immune suppression to get a head start on the rejection, too.

I got coffee late, and the homeless were back out, one at the back hospital entrance. She was a lady in a wheelchair that I recognized from last week. I tried to sneak past her on the way back because I didn’t want to be screamed at. I skated around behind her and made it to the stairs before she started screaming obscenities at me. It’s a good thing she was in a wheelchair and couldn’t chase after me; although I’ve seen her out of it, I’m not sure she really needs it.

The nurse finally brought the shower supplies. I she just expected me to make the bed, I guess. I couldn’t find the fitted sheet, so I went and got one. After that, I proceeded to spend the entire time Amanda was in the shower fighting a fitted sheet on her bed; I was livid! I was already in a bad mood, then I hit my fingers on the door, bringing back the sheet, and was bleeding. I had to get a new sheet because I bleed on the first. Then, I fought with the second sheet even more. To top it off, I ended up finding a fitted sheet in the original stack. Let’s just say some fitted sheets didn’t make the laundry bag and found their way into the trash. Aggressively thrown in there!

After Amanda’s shower, she was hurting. She called for pain meds, but the nurse didn’t want to give her the morphine. She was getting premeds, Benadryl and Tylenol, before the “mab,” so the nurse was worried about her blood pressure. Amanda started to explain the other pain med didn’t work. I interrupted, still mad from the fitted sheet incident, and made it known she needed the morphine. She left and returned with the morphine. 

I grabbed some Chipotle for lunch for Amanda; I’m taking it easy on lunches for my waistline. It’s a good thing the homeless lady didn’t come after me because I was still ready to fire on someone. I dropped the food off and headed to the podiatrist’s office. I called a medical center location so I could walk, but they were booked. They squeezed me in at their downtown location, about 15 minutes away.

When the doctor walked in and saw my foot, he said, “That’s a hack job; whose work is that!” He ended up needing to do both sides. I had a thin layer I thought was nail bed or callused skin, but it was a thin layer of nail that needed to be removed and deadened, too. I had numerous ingrown nails removed when I was younger and finally had the corners of my nails deadened. After losing both my nails to trauma, they never grew back right. So, I opted to have them permanently removed. Needless to say, this was nothing new. That didn’t stop the fellow from asking a million times if I was ok while she numbed my toe. I was just trying to get some shut-eye and not think of the needle going into my foot over and over, but she was able to remind me of it continually. When done, the doctor asked me my favorite color like I was 5. I told him whatever he said not to tell me, so I obliged.

The doctor said they’d get me a paper shoe. I told him I could fit my foot in my tennis shoes, but he said no. I made it to the elevator out of his sight and then put my shoe on. I wasn’t about to walk the parking garage or the hospital with a paper shoe on! After the appointment, I needed to get my jeans from the cleaners and pick up a curbside pickup from Target. 

I stopped by to get my jeans first. The older owner was there; listening to him pronounce my name was fun! When he returned with my jeans, he swung them to show how starched they were. They cut through the air like a knife; he was proud. They were only medium and equivalent to a light starch from my border town cleaners! I loaded the jeans in the back of the Yukon and noticed the patient bag of dirty clothes I’d brought down. I thought I had a pretty good load with that and my pillowcase full. I went back in, and he, in his thick oriental accent, told me of the minimum 10 pounds or $30. Looking at me over his glasses, I could tell he didn’t think it was worth it. I thought briefly of telling him about the underwear debacle but didn’t think it would translate well! I would gladly pay the money not to go through that again.

Then I picked up some afternoon refreshers, some emotional support donuts for me, and my Target order and got back to Amanda. I left at 1:30 and didn’t get back till almost 5. While I was out, they started the new mab med, Rituximab. It was slowly increased over about 5 hours. It started out ok, but Amanda started to get flushed and a little nauseous. They got her some meds, and it seemed to get better. The infusion was just about done as I got back. When I walked in, she seemed ok but not great. She did seem happy I was back; maybe she missed me, or perhaps she was just glad to see the StarBs refresher!

We ordered Mediterranean for dinner from one of our favorite places. I had my bed chair/foot elevator spread with food and was digging in. I had two bites down when Dr. Nair, our cardiologist, walked in. He went over everything and gave us the big picture. I grilled him pretty good on things. To condense it, the big gun med was approved and will be weekly over a month, but we can go home in between, and the Rituximab may or may not change to another mab but will be monthly. I asked about side effects of the big gun, and he said it was well tolerated by the patients he had used it on before, but they weren’t sitting up eating Mediterranean food the night before they had it either! The others were  bad off and on a heart-lung machine before the treatment. That kind of scared Amanda a little, thinking the others were so bad off. She lost a bit of her appetite after that. We got a good laugh from his comment on our cuisine choice, though.

We settled in after dinner to watch a movie. Amanda had some chest pain and needed the morphine. Of course, it took a while to get it; I’ll be glad when we’re back in the ICU. Per the doctor’s instructions, I’m currently soaking my foot in an Epsom salt bath. I’d been through the motions so much I already had the salt in my Target order. I had Neosporin in the order, too, but not the cream, which he was particular about. 

We are just waiting for the delivery of the new medication before they move us to the ICU, and if everything goes as planned, we may get discharged a day or so after the treatment. Hopefully, she’ll tolerate the medication well and have no crazy side effects. The move to the ICU while taking the new medication is kind of scary, though. As slow of a response time as they have, I’d be scared if we did have any complications here. That scares me if Amanda didn’t have anyone with her and were to have issues. They are on top of things in the ICU. They better not ask me to fill out a survey for the transplant floor because I will tear them a new one if they do. I’ll likely speak with the nurse manager or someone before we are discharged. We’ve been in this hospital a ton, and this is the worst it’s been. Here we come, ICU, though.