My experiment with cutting my lisinopril seems to have helped. My creatinine this week was back down to 1.4, and my GFR increased to 40. My BP is still doing very well so I’m going to stay on the 20 mg lisinopril for another week to monitor and then try stopping it all together and see what happens.
My hemoglobin was 9.9. No Aranesp though, since I got a shot last week.
I ran into Dr. T, the oncologist, Wednesday while I was at the lab. We chatted just for a couple minutes. He said he wants to just stay the course right now with the Kyprolis. He’d like to see the protein in the urine drop to 400 or lower. (I’ve doubted him before, and he’s proven me wrong. Hopefully that trend will continue.) He said, “Once you’re stable,” to which I must have made a face because he laughed and said, “I’m referring to your kidneys, not your mental state.” Snort. But, “Once you’re stable, we may consider going off the Kyprolis and trying Ninlaro, a once a week pill.” Sounds good to me. I haven’t read up on it a lot yet but I did see one of the side effects can be neuropathy. Oh brother. But I’ll look into it more. He did say, “We’ll have to convince your insurance company to pay for it,” but so far he’s been successful with getting that stuff done.
He said, and not for the first time, “You’re an experiment. We just have to try stuff and see what works.” That’s me. The lab rat.
He also made an interesting comment: “We need to make sure this disease hasn’t turned malignant.” In other words, that it hasn’t morphed into multiple myeloma. I get his concern, but I don’t think that’s how it works. They really are two separate diseases (and obviously multiple myeloma is much more serious). I don’t ever remember reading anything that indicated this kidney issue turned into cancer. But like I said, I understand why he would want to rule that out. He orders a blood test pretty regularly that looks at “free light chains” that I have zero understanding of, except to say that a specific ratio of kappa to lambda light chains (whatever the hell those are) can be a positive test for multiple myeloma. And my results have always been negative.
He mentioned perhaps having another kidney biopsy. At first I said, “Yeah I can do that, as long as it’s through nephrology and not interventional radiology.” I shudder when I think of that terrible experience getting that second biopsy. Oh my god, it was so stressful and awful. The first one was a breeze!
Dr. T said, “You could have Dr. A do it.” Well … yes I could. But it seems a bit overkill to drive 3300 miles for something that could easily be done here—just as long as it’s done by a nephrologist.
But later I realized it would be a lot easier and with significantly less risk if I just had another bone marrow biopsy. Now that wasn’t pleasant, by any stretch. If I remember correctly, it was actually somewhat painful, and I felt pretty sick immediately afterward. But it didn’t require my staying in the hospital for six hours post-procedure, and it certainly doesn’t run the risk of having to remove a freakin’ kidney if the bleeding doesn’t stop. I’ll definitely ask him about that when I see him on Wednesday.
I still haven’t seen Dr. F, the local nephrologist since my hospital stay last November. I’m trying to decide if I want to see her again or not. Dr. A says it’s good to have a local kidney doc in case any emergency stuff is needed that Dr. A can’t order since she’s out of state. Dr. T says it doesn’t matter. If it’s an emergency, whatever needs to be done will be done, and he can coordinate care/services. But what about for something like a kidney biopsy?? It would need to be requested and performed by her or at the least someone local.
I liked her a lot in the beginning. She’s direct and aggressive. Of course I didn’t like that she dropped the whole “find your own specialist” thing in my lap but she eventually tried to help. She didn’t have much faith in this whole chemo treatment protocol and instead thought I should just prepare myself for dialysis. I can understand that. Again, rare disease, not seen before, etc etc. And I can accept that two highly educated specialists can have differing opinions on how to treat this.
But I lost some faith in her when she wouldn’t communicate with Dr. A, when she wouldn’t get the biopsy results to her even though she knew she was anxiously awaiting them, when she wouldn’t coordinate with Dr. A and Dr. T about doing the Solumedrol infusion when I was in the hospital so I could get off the prednisone. And there’s been no contact from her or her office in almost a year.
There’s another nephrologist in Albuquerque who was highly recommended to me by a renal case manager I worked with, but I got the info from her after I was already established with Dr. F. But that’s an option too. I guess I should just suck it up and make an appointment with Dr. F then decide from there.
I have an appointment with the endocrinologist on Monday. Oh right… that whole post-cancer thing! Geez. It’s easy to forget about that when dealing with all this other crap. From what I can see, the labs I completed for her appear normal. The one that was way off the charts when Dr. T upped my thyroid meds is now back down to where it’s historically been. Maybe she’ll order another thyroid ultrasound. I see notes in my calendar for past ultrasounds (the last one being in February of this year) but I didn’t indicate what they were for. (It’s probably in this blog!) But I should keep better records of stuff like that.
This has nothing to do with anything but a couple weeks ago one of the nurses was talking with me about some such thing, and she leaned in somewhat close to me and said quietly, “Well, what I don’t understand is [something from a completely different political viewpoint than mine].” What I don’t understand is why people talk about politics at work at all. I definitely don’t discuss politics with my patients. They rarely bring it up in my current job, but it used to happen regularly when I worked in the “white world.” People wouldn’t think twice about spouting off their potentially offensive opinions, and it may not have been about politics specifically; often it was blatantly racist stuff.
It was an awkward situation to be in back in the day because I was working in a private practice selling hearing aids, trying to earn that commission, yo. Gotta make that sale but also don’t want this jackhole thinking I agree with his racist mind.
Back to this nurse… she imparted her opinion, with which I definitely did not agree—but she’s the one holding the needle she’s going to jab in my arm, you dig?
I fell back to my old standby response to stuff like that.
“Hmmm. That’s not been my experience.”
And then I just changed the subject. It was an awkward exchange. Zip it, lady. Keep your opinions to yourself.
So… Monday, endocrinology appointment, then blood work for Dr. T directly afterward. Wednesday, appointment with Dr. T. Friday, A1C test for my PCP, whom I see the following Friday. Fun fun!
Hemoglobin: 9.9
Creatinine: 1.4
eGFR: 40
And just to prove there’s a meme for any occasion… a creatinine meme. Who woulda guessed?
Low, Low, Low 