Long time no blog! Two reasons for this: first, things are mostly continuing to be stable, which is good. And second, I just haven’t had the energy. Most of this is just written off the top of my head but I do try to make sure it has a minimal number of errors and also has some sort of ‘flow.’ I work long hours, and I just haven’t had the spare time or brain power to put into it.
But as I said, everything seems to be pretty steady. My creatinine is typically between 1.1 and 1.4. Haven’t gone above that in quite some time. My eGFR has been in the high 40s, one high 50, and even one flat out 60! Amazing. My hemoglobin has ranged from 10 to 10.6 so I STILL haven’t needed an Aranesp shot—since May. MAY!! Five months. Hard to believe.
I saw my nephrologist in the beginning of October. It was a five-minute appointment that made me question why I even had to come in. It could have been handled over the phone. Seriously. (But of course my cynical side says this way he can bill my insurance for the visit.) He’s pleased with the lab results and treatment, sees no reason to change anything, and doesn’t see the need to consider another kidney biopsy until the oncologist decides to taper off or stop the treatment. My next appointment with Dr. T is in December so nothing will happen at least until then. I’ll see the nephrologist again in six months or sooner if they decide to do the kidney biopsy before then.
I asked him about the young woman he had mentioned before who has the same disease I do. He had said he was going to start her on Kyprolis. But at this appointment, he said it was too late for her; she would be starting dialysis soon. That’s so sad. She’s only in her 20s. Hopefully she can get a transplant so she can live her life.
[Okay, side note. This is not going to be a rant about masks although it might sound like it to start. Wear a mask, don’t wear a mask, whatever. Clearly it’s everyone for him/herself. BUT… why do people wear their mask below their chin?? It’s hilarious to see people strolling through the store with their chin covered up. Just take the fucking thing off! It’s not required! You don’t HAVE to wear it, and you look like a tool! The nephrologist wore his below his chin (from a more-than-safe distance). WHY??? What is the freakin’ point? Moving on… ]
I assume that when I see the oncologist in December, we’ll start the weaning off process from the Kyprolis. I don’t know if he’ll go to a lower dosage or if it will be administered less often. Aside from the disease process itself, I’m curious to see what else changes.
While this poison is obviously helping me, there are so many side effects. I am mostly hopeful the fatigue lessens. To get through a day without calculating how long it will be before I can go back to sleep? Sounds like heaven. How about the blood pressure, anemia, and creatinine levels? Kyprolis can affect all of those. And maybe even the blood sugar since it’s administered with dextrose. I’m also curious to see if my hair gets thicker. I was talking with a patient at work who said something about losing his hair (not as common in Native American men), and I mentioned my hair was really thin due to a medication. I leaned over so he could see my ‘bald spot,’ and he said, “Good thing all your patients are short so they can’t see the top of your head!” Ha. Good one.
I don’t think I’ll see much relief from the neuropathy in my feet as I think that is from the previous medication. I’m also curious if the swelling in my gums improves. I thought maybe it went away but it turns out it’s still there; I’ve just gotten used to it.
I don’t know what the plan for the dexamethasone is. At one point the oncologist said I would be on that and Revlimid for the rest of time but then I couldn’t take the Revlimid. I guess we’ll see. Dexamethasone also increases blood sugar, blood pressure, and swelling. Luckily I’m not on a very high dose, and right now it’s only one day a week.
I’ve also had thrush for over two years now. It’s so gross. It’s just a constant awareness of your tongue all day long. Yuck. The thrush resulted from the high doses of prednisone, but because I’m on the dexamethasone, it’s just never gone away. Over the years I’ve gone through at least two rounds of fluconazole, but it can cause kidney damage so I have to use it sparingly. Then I was prescribed clotrimazole, which are lozenges. I’m not sure how effective they are because you have to use them five times a day! I mean, come on. That’s really impractical if you have a job that requires you to talk all day like mine does. So I try to remember to take it when I’m on leave, but I don’t think it quite works like that. I’m sure you have to be consistent with it, and it’s really just not possible.
Aside from the fatigue, I’m also very hopeful that I’ll see a decrease in the damn heartburn. It’s definitely improved over time, and there were several weeks when I didn’t have it at all. Now when I have it, it’s enough to keep me awake most of the night but lately I don’t have the actual reflux. So, better but still sucky. Hopefully all that will just go away. (I did read that if you sleep on your right side it’s better, and it does seem to actually help. Just a hint if you have acid reflux!)
Even with all these hundreds of side effects (okay it just feels that way), I’m lucky to have not had any serious reactions to the Kyprolis. One thing it can cause is acute kidney failure (ironic since I’m taking it for kidney failure). That would have ended this little experiment very quickly. Hopefully things will hold out for the next eight months or so.
A couple weeks ago at the infusion center, when the nurse put the IV in, the vein infiltrated (I hope I’m saying that correctly), so the “juice” went into my arm itself instead of the vein. I noticed it right away because even before I could see it, I felt it—everything just felt tight. Then a large lump formed in my arm. But it had only been going on for a short time, so it wasn’t a big deal. I felt bad for the nurse because she was a bit frantic about it. She said, “You’ll never want me to work with you again!” I said, “You can work with me anytime.” She put the IV in the other arm, and boom, no problem.
That happened on a Wednesday. The following Tuesday, I was seeing one of my long-time patients, and I was taking an impression of his ear for a new hearing aid. When I went to take the impression out, it broke off in his ear. Now this would be bad enough if this wasn’t the SECOND time I’ve done this to this poor man. Yep, same damn thing happened with him about five years ago. For reasons I won’t get into, he has a somewhat malformed ear on one side. I was POSITIVE that after the last time I could take the impression this time without a problem. I knew what I was doing, right? Not hardly. Luckily I was able to get the stuck part of the impression out of his ear without incident, but damn, did I feel like an idiot. I said to him, “You’ll never want to work with me again!” And he said, “No, it’s okay, I know you know what you’re doing.” (Did I mention he’s the nicest guy??)
So sometimes shit happens, even to those of us who have been doing this for *ahem* decades. (But trust me, I’m never taking another impression of his ear!)
I am even more of a human pin cushion these days than before. I got my flu shot in August and my third COVID booster (fifth shot total? Is that correct?) in September. No reaction aside from the third arm emerging from my back. Then earlier this month I got my second series of Evusheld shots (the pre-exposure prophylaxis for people like me with piddly immune systems). Then next month I’m getting my Tdap booster. Man, the last time I got that (in 2012) my arm hurt like hell for quite some time. Hopefully I’ll have a better experience this go-round.
Getting that Evusheld shot was an ordeal! I got on the elevator to the third floor. A doc got on with me and asked me to push the button for the fourth floor. Then he said that particular elevator often skipped the third floor. Sure enough… it went straight to the fourth floor without letting me off on the third. So then a guy got on to go back to the first floor. I again pushed the button for the third floor. Nope. Down to the first floor again. Screw it. I got on a different elevator.
Then in the infectious disease department, where the Evusheld shots are given, there was only one nurse, and he was running behind. And apparently it was also taking the docs a long time to approve the meds, then once approved, they had to be sent to pharmacy to be filled. So it was a long wait before I even got the shot, probably close to an hour. Then after getting the shot I had to wait another hour to make sure I didn’t have a heart attack. (Spoiler alert: I didn’t.) So my appointment was at 10:30, and I got out of there about 12:45. Oh well. I’m good for another six months on that.
Before I share some kidney news, I also want to share that I’m doing a fundraiser to purchase pet food for some rural animal shelters throughout New Mexico. We have six shelters we’re trying to support, so if you are inclined, you can make a donation at the link below, and I thank you kindly.
Kidneys in the News
Thousands of lives depend on a transplant network in need of ‘vast restructuring’
A government review of the agency that operates the transplant system in the United States indicated it is woefully outdated and inefficient. According to the articles below, “About 106,000 people are on the waiting list for organs, the vast majority of them seeking kidneys…An average of 22 people die each day waiting for organs.” Damn. That’s over 8000 people a year.
A few other points from the articles:
- If the government wants to buy the code from UNOS, the transplant program overseer, it will cost $55 million. They’re gonna need a bake sale.
- The Senate Finance Committee, while reviewing the program, warned DHS that there is essentially no security of the patient information stored by UNOS.
- More than 20% of kidneys procured for transplant in the US are not used, compared to 9% in France, 12% in the UK, and 8% in a consortium of eight European countries.
- In a seven year span, seventy people died and 249 developed diseases due to improper screening of the organs before transplant; one patient was told AFTER his transplant that the donor had aggressive brain cancer so the recipient would likely be dead in three years anyway. Nice.
- Healthy kidneys designated for transplant have accidentally been thrown in the trash; others have been misplaced. Misplaced! How do you misplace a kidney?
- The organ transplant system in Alabama is being investigated for money laundering. Whoa.
The Committee made several recommendations to improve the organ transplant network, many
of which seem pretty basic to my uninformed brain. It will be interesting to see what comes of all this, but yikes. This is pretty scary. Apparently, the current agency, UNOS, has been overseeing the transplant system across the country for nearly 40 years with little change or modernization of its processes. But hey, they’re saving money! Lives be damned!
I don’t want to end on a downer note, so here are a couple of good things, including a heartwarming story:
Remdesivir in Patients with Severe Kidney Dysfunction
Paxlovid, for treatment of active COVID infection, can’t safely be used by kidney transplant patients or those with severe renal failure. But remdesivir has not been shown to be more toxic in patients with an eGFR of under 30. It was a small study but at least there is an alternative for those patients.
And lastly… get out your hankie.
Doctor Donates Kidney to Patient
A nephrologist with a rare blood type donated his kidney to his longtime patient. It’s a sweet short article if you’re interested.
Until next time…