Wednesday of this week I was completely wiped out. From the get go. I went to bed pretty early Tuesday night, after taking a nap, and woke up Wednesday morning just dragging. As soon as I got to clinic, about an hour’s drive, I fell asleep in the car. I mean I just zonked out. It was a grind to get through the day. I don’t know what that was about.
And remember when I said a couple of weeks ago that I wasn’t having any “signs” of kidney issues, in terms of swelling or peeing every 30 minutes? Spoke to soon. Not about the peeing but the swelling has returned with a vengeance. I change out of my scrubs and into street clothes before I leave clinic, and my legs and feet were so swollen Thursday. I’m always reminded of Peppermint Patty when I see swollen feet like that. Don’t ask me why. I mean, she was just a kid, right? But that’s what I think of. So I have Peppermint Patty feet. It’s so uncomfortable. I’m back to compression socks. Oy joy.
I had a video visit from Dr. A on Thursday that was a little overwhelming. Just so much information. A review of my labs showed that everything is still completely fucked up.
- My creatinine is still much too high at 3.1. The high end of normal for women is 1.2.
- My GFR is 17. SEVENTEEN. Ugh.
- I had stopped the vitamin D and calcium as my parathyroid hormone had been severely low. Dr. F. the local nephrologist, said that they could have been suppressing my natural production of these things. But now my parathyroid hormone is way HIGH, very much out of the range of normal. What the hell does that mean? I have no idea.
- Naturally, my vitamin D was pretty low too.
- My hemoglobin is still low but it’s improving. It was 9.3, up from 8.5, so that was good news.
- My potassium is also improving, although still low as well. It was up to 3.0 from a low of 2.1 so the supplements must be helping.
- The very bad news was the protein in my urine jumped back up again from 3000 mg to 10,000 mg. NOT. GOOD. Not good at all.
- My blood pressure is high again, in the 150s/90s. Why? Who knows.
So, LOTS of medication changes. I’m back up to 21 pills a day. Not my highest, but we’re getting there. In no particular order:
- Yet another blood pressure medication, a new one to me. But it’s replacing one I’m already on, so at least it’s not in addition to.
- I’m back on vitamin D.
- Back on the Bactrim, the somewhat controversial antibiotic. I think her thought process here is that being off the Bactrim didn’t bring the creatinine down significantly, so she’d rather have me on it for protection against infections. She did some specific blood work that determined the Rituxan is still in my system, which is good. She said some people clear it out very quickly and then have to get another round. But that’s not the case with me. The downside is the suppression of my immune system, so she wants to keep me on the Bactrim. That means I need to start back on the probiotic as well.
- But the super shit thing, which inspired the title of this particular entry, is that I’m back on prednisone. I already just want to scream. She had a slight bit of mercy on me and only started me on 40 mg, not the 60 she had originally told me, but still. I’m ALREADY so swollen, and this will just make it worse. I mean, does a mask even exist that will be big enough to cover my gigantic moonface?? She doesn’t know at this time if I’ll need to be on it long term like before or not. But I’m already thinking… swelling, thrush, loss of taste. Gee, will I get to experience all that again?? And this time while working in clinic? God that sounds like so much fun. At least scrubs are roomy, and I’m wearing a lab coat. I mean, I gained 30 pounds in three weeks the last time. Can’t freakin’ wait to go through that again. I did tell her I would try not to hold this whole prednisone thing against her (in jest). She said, in all sincerity, “It breaks my heart to have to do this.”
- I’m taking omeprazole until I get to 20 mg of prednisone (if I have to stay on it that long) because apparently prednisone can cause heartburn-type issues. But I’ve also read it’s bad for the kidneys, so there’s that.
- I’m now on furosemide (Lasix), a diuretic to hopefully help with the swelling but she’s not convinced it will work at the level that’s “safe” for me to take. Diuretics can also increase the creatinine levels in the blood. It’s all just a balancing act.
There are other medications changes but I can’t remember what they are off the top of my head. Those are the biggies.
The not so surprising news is that she’s ordering another kidney biopsy. She wants it done “STAT” but of course she’s got to work it in the schedule of my local doc here—and MY work schedule, which it seems doctors just never take into account. I told her I could do it this Tuesday if the doc is free, and if not, it’s going to have to wait until the following week. I’ve explained to her that there’s no one to fill in for me at my clinics. If I don’t go, clinic is cancelled. And some of these clinics are held once a month—which two of my clinics this upcoming week are. And I really can’t see how much difference waiting one extra week will make.
Depending on what she finds, we stay the current course if the disease hasn’t progressed substantially. If it has, I’ll need to make a second trip back to PA for another round of a different chemo drug. This one is called Bortezomib. I haven’t read up on it yet, but Rose, my personal oncology nurse extraordinaire, said it’s commonly used for multiple myeloma (cancer of the plasma cells). This makes sense since the disease that I have is an overproduction of plasma cells in my kidneys. She said the biggest issue is that it can cause neuropathy in the fingers and toes but that typically the side effects are minimal, and it’s generally well tolerated.
I did tell Dr. A that if we do have to go this route, if we can do it THIS year, that would be ideal since I’ve already met my out of pocket expenses. Dr. A said that if that becomes the plan, it will happen quickly. Honestly though, as I gave it more thought, I realized it really doesn’t matter. It’s not like they’re not going to get their $6000 from me next year. I told my mom I wish I could just give them a check for six grand first part of January and then not pay anything else for the rest of the year. It would just be easier that way.
So that’s where things stand for now. I hope the kidney biopsy gives her some more insight. I completely understand that there’s no particular roadmap for this disease. At times I get frustrated at all the changes in meds and such. I’d just LOVE a month or two with some stability. But I guess this is just how it is when you have a rare disease with little information to go on. I get it. You throw this at it and see if it sticks, and if it doesn’t you move on to the next thing and hope that works.
I keep having conversations with myself, usually to the tune of, “You’re not dying.” I mean the worst that can happen is I go on dialysis. That’s not trivial thing by any means, but … I’m not dying, yet. Last night was a rare night that I couldn’t sleep with all this stuff swimming around in my head. That’s very atypical for me. But that’s what I kept coming back to. This may kill me some day but it’s not going to kill me today, or this year, or probably for a number of years.
And to end on a somewhat upbeat note, I felt pretty good today. I didn’t even take a nap, and I managed to do a load of laundry, deal with a dead car battery, straighten up the house (“clean the house” would be a lie), AND take care of the dogs. I think with the potassium and hemoglobin on the rise, I might not be married to the couch as much anymore. As I always say, fingers crossed.
For your musical interlude: https://www.youtube.com/watch?v=LQcMOI8dMas
Low, Low, Low 