Hello! It’s been a while. I hadn’t really had much to report over the past several weeks. Nothing new going on until pretty recently. Creatinine has been stable, eGFR has been between 45 and 59 (59!!! Normal is 60! That was just one time, but hey, I’ll take it). My hemoglobin has been between 10.1 and 11.1, which is very good for me. Still no Aranesp shot—for the past seven months. Unbelievable. Everything was just humming along. And then…
Two weeks ago, I woke up in Gallup. No, that wasn’t the problem. I had stayed the night out there for work, and when I woke up I could tell that I wasn’t seeing well out of my left eye. I’m practically blind without my glasses but even with them off, it was like a film was over my eye. I figured it was something temporary and didn’t worry too much about it. But on the hour’s drive to my next clinic, it didn’t get any better. It was like I was looking through a fog. I could still see but it definitely wasn’t normal.
Luckily, in that particular clinic I work in the building with the optometrist, so I asked him to take a look at my eye. He did a few tests and such, didn’t see anything on my cornea but my left eye did appear to have something abnormal going on. He showed me the pretty color pictures, and even though I had no clue what I was looking at, even as a layperson I could tell it looked different from my right eye. He suspected I might be on the verge of a retinal detachment. “I’m not saying it’s GOING to happen, I’m saying it COULD happen.” He told me the symptoms to watch out for, none of which I had at that time. He said I should try to get in to see a retinal ophthalmologist.
Coincidentally, when I saw my PCP in November, he referred me to ophthalmology for a routine diabetic eye exam. I called their office and spoke with the triage nurse.
To back up just a bit, I initially thought this vision thing sort of came out of the blue. But as I thought about it, I’d been noticing some decrease in my vision over the past month or so. Street signs weren’t as clear as I thought they should be, that sort of thing. So I also had already made an appointment with my optometrist which was coming up the following week.
I told the triage nurse what was going on and that I had an upcoming appointment with the eye doctor. She told me to keep that appointment, and if the doc saw anything of concern, to fax it them so they could get me scheduled. She also reiterated the signs to watch for a detached retina. Of course I was heading out of town again that evening for work and would be gone for two nights in the boonies. I asked if something should happen after hours, what do I do? Is that like a “Go to the ER” type of thing? She said, “Oh no, definitely don’t go to the ER. You’ll sit there all night, especially now, and they won’t be able to do anything for you. Just call us. We have a doctor on call 24/7.” So that’s good to know. After hours eye emergency?? Call Eye Associates! I felt better after having spoken with her.
That was my last overnight trip of the year, thank god, and nothing weird happened with my eye. Nothing got any better though either. The bad thing is that my left eye is my dominant eye so it’s really difficult to try to train my brain to focus more with my right eye. It’s especially difficult in bright light like when I’m driving during the day. It’s like everything has a sepia filter over it. And when I’m on the computer—which is all the time—it’s really tough. I can dim the screen a bit on my personal laptop and change everything to “dark mode,” but government computers are so locked down I can’t even dim the display. And this is not me being dumb and not knowing how to do it. I asked our Area IT people. Nope, peons like me don’t have access to things like that. I’m not exactly sure what harm they think I could do with screen settings, but apparently they’re not about to find out. I may have to find a workaround, with some sort of screen cover or something. It’s really a challenge trying to type EHRs like this.
The week before Christmas, I was supposed to work just Monday and Tuesday, then off until the following Tuesday, work that day, and then off again until the next Tuesday. But over the weekend, I started feeling unwell. I came home from Kyle’s house Sunday and went to bed—and it was like 4:00 in the afternoon. I got a nasty stomach virus and wasn’t able to work Monday or Tuesday. If you only knew how rare it is for me to call in sick for ONE day, let alone two. (I currently have 950 hours of sick leave if that gives you some context.) I’m sure my boss thought I was at death’s door.
Wednesday I was supposed to have the optometrist appointment first thing in the morning, then see the oncologist, then have chemo. I cancelled chemo, changed the oncology appointment to a video visit, but I mustered the strength to drag my sorry self out of bed and get to the eye doctor. I felt that was pretty important. It was now the Wednesday before Christmas, and of course I didn’t want to expose anyone to anything, so I wore an N95 mask. (I had taken a COVID test the day before just to be on the safe side.)
The doc did an exam, and as directed by the nurse at Eye Associates, I asked for him to dilate my eyes. He didn’t see anything overt except maybe the beginnings of a cataract in my left eye. Seriously? I mean I’m 54. That’s kinda crazy. But he said it’s too small to do anything about at this time. He did say my prescription had changed but didn’t say by how much, and I didn’t think to ask. (I wasn’t feeling my best, for sure. I was just trying to hang in there for the appointment.) We did talk about the fact that I’ve been on chemo for a very long time and that alone can cause some vison changes. He started to give me a new prescription for glasses but I said to hold off for now as I was going to see my oncologist later that day to discuss (hopefully) changes in the chemo.
I’ll see him again in six months but I think in the meantime I’m going to get another eye exam with a different doctor. It’s not that I felt that one was inaccurate but I didn’t feel like he took my complaints seriously enough. I’m sure part of that was on me—as I said, I wasn’t feeling well so I just wasn’t able to ask all the questions I needed to ask. But he seemed in a hurry to write me a prescription for glasses and get me out of there. It probably also didn’t help that it was his last day of work before the Christmas holiday.
I saw Dr. T (the oncologist) through a video visit. I told him about the eye issues. He didn’t think the Kyprolis is causing changes to my vision (although if you read the side effects, blurred vision and vision loss are both listed). He said the cataract is likely because I’ve been on corticosteroids for so long. That can cause premature development of cataracts.
Come on, are you fucking kidding me?? Son of a bitch.
When is the cure worse than the disease?? I’m being dramatic, I know. Dialysis would SUCK so much worse than I can even imagine, but god. All these meds I’ve been on for over two and a half years?? Neuropathy, diabetes, cataracts… what’s next??
Hopefully I won’t find out. Since everything is going well, starting this Wednesday, I’ll only be having chemo every other week (and therefore fewer steroids as well) for a while. Depending on how things go, we’ll reassess in a few months and see if I can drop down even further. Amen and hallelujah. I really want to get off all this crap. I know it will take time but even just cutting down feels like a bit of a relief. He’ll have me do a repeat 24-hour urine in January and then again in March (I think), and we’ll go from there. We talked about another kidney biopsy, and he said he thinks we should wait until next summer to repeat that. “Those aren’t without risk, you know.” Yes yes, I’m well aware.
He reminded me to drink lots of fluids and not allow myself to get dehydrated due to the stomach bug. Luckily I had some odansetron from the last time I had a similar bug, and that stuff works like a charm. I was feeling better the next day.
However, I was completely wiped out, even after I was feeling better. I’m STILL wiped out, and it’s over a week later now. I think with this chronic illness I’m just not going to bounce back as quickly as I used to. I was off Wednesday and had planned to try to get the house back in its original form after the Christmas festivities, but that didn’t quite work out. I mostly slept all day and got very little done. But I think I needed it. I had to work the following day to make up one of the clinics I cancelled last week when I was sick, so I was glad I got the rest. Thursday was a long day that included a three-hour commute (instead of a one-hour commute) to Santa Fe due to the crappy road conditions. I got there an hour after my first patient was scheduled, but to my knowledge, no one ever died from not getting a hearing test. Now I’m off again until Tuesday.
A bunch of miscellaneous stuff:
A few weeks ago at chemo, a woman had completed all her treatments, and she got to ring the bell! I didn’t even know about the bell, but it was really neat to be able to witness her glee as she rang that bell to signify that she was DONE with chemo. Lots of tearful goodbyes between her and the nurses, and she gave them a HUGE gift basket completely FULL of gift cards. I mean there must have been a fifty of them in there at least, and that’s no exaggeration. I was glad I was there to see that.
I’ve been having heart palpitations again, which is weird. They’ve kept me up a couple nights. I was getting these before when my hemoglobin was pretty low so it’s odd that I’m getting them now when It’s much improved. However… guess what one of the side effects of Kyprolis is? Yep. So maybe that’s all it is. My blood pressure is fine so I’m not worried about that.
I also have tinnitus in both ears. I’ve had it in my right ear all day every day for more than half my life, so I’m pretty well used to that. But now it’s in both ears all the time, and it’s pretty damn annoying. Yep, that can also be a side effect of Kyprolis.
I have high hopes for a lot of positive changes from reducing the chemo, probably higher than I should have. I really do hope the fatigue lessens. Starting this week when I go back to work, I’m going to try something desperate: I’m going to go to bed earlier. I already go to bed pretty early for me, usually by 10:30, but I’m going to aim for 9:00 or 9:30 when I can. Sometimes I’m barely home from work by then so obviously it won’t happen those days, but I’ve got to try to do something. I can’t rely on sunflower seeds to keep me awake for the rest of my life.
A weird thing that happens with kidney disease is itchy skin. It has to do with the toxin build up in the kidneys. Man it’s annoying! My forearms, shins, and my lower back itch a lot. Sometimes I scratch my legs so much I break the blood vessels, and I have a bunch of red bumps on my leg. It’s a pretty sight. Lotion helps but not for long.
I got my last Evusheld shots in October, and by last, I mean LAST, unless something changes. I was already scheduled for my next shots in April but they called me to cancel the appointment. The FDA has revoked the emergency use status of the shots for immunocompromised people because they have not been found to be effective against the new COVID variants. Oh well, it was good while it lasted and gave me a little boost of confidence. Who knows, maybe they’ll revamp it and have something more better (yes, more better) down the road.
It’s been two years since my hospital stay. As bad as that was, it was the thing that got me on this road to (hopefully) remission. I certainly haven’t felt as bad as I did back then, so at least that’s something.
There was another recent research article about my disease (PGNMID). I don’t pretend to understand half of what these research articles are talking about but there were some interesting points:
- This disease was identified fewer than 20 years ago. That’s brand new as far as diseases go.
- The diagnosis rate is increasing since it’s on the radar more now.
- The relapse rate after a kidney transplant is nearly 90% (NINETY PERCENT!!) , usually within three to four months of transplantation. Yikes. How awful is that. I knew it was a possibility, but I didn’t know it was THAT high. I’m sure soon people with this disease won’t be eligible for a transplant because (I hate to word it like this), it’s wasting a kidney, and they are in such short supply. I just can’t imagine going through the physical and emotional trauma of a kidney transplant only to have this dreaded disease return in a few months. God.
- 20% of patients with PGNMID reach end-stage renal disease (i.e., dialysis). I’m actually surprised it’s not higher than that.
- This article discussed rituximab (Rituxan) and bortezomib (Velcade) as treatment options, both of which I’ve had. I think the Velcade would have worked; it was just an issue of the neuropathy getting in the way.
- Carfilzomib (Kyprolis) wasn’t mentioned in the article. As my nephrologist said, so far I’m the only one she knows of getting this particular treatment for this disease. How amazing would it be if this drug is the answer for at least some of the people afflicted with this. Let’s hope so.
And a feel-good story to end on:
Happy 2023. Hopefully it treats us kindly.