March is National Kidney Month! How lucky am *I* to have two “special” months in a row? Yep. Special all right.
I read on one site that 40% of people who have significant kidney disease are unaware/ undiagnosed. Another trusted site said NINETY percent of people are undiagnosed. That’s crazy. It’s a leading cause of death in the US, more so than breast cancer or prostate cancer, yet people don’t give it much thought. There are typically no symptoms with early kidney disease, but luckily it can generally be detected through routine blood work.
My symptoms were so odd and not associated with even advanced kidney disease, but I’m thankful to have had them. I mean I was already in Stage 3 when I was diagnosed. Had I not had symptoms, I might have just ambled my way straight into dialysis. Check your creatinine levels and your eGFR next time you have blood work done just to be on the safe side.
My creatinine had been trending upward the last few weeks. At one point, it was as low as 1.1 – 1.2 (which are normal values), but it had increased back up to 1.6 – 1.7 recently. I messaged the doctor to inform him of this, and he ordered another 24-hour urine collection. Doing those is not a big deal, but it is mildly inconvenient, more so for women. If you have to pee during the night, you gotta mess with all this stuff when really all you want to do is go back to bed. I always have to schedule them when I’m not working because I really don’t relish the idea of bringing my giant jug o’ pee to clinic, and I’m sure others would prefer I not store it in the communal fridge. (It has to stay refrigerated.) I usually end up doing them from Friday morning to Saturday morning. The instructions say, “If you miss even one drop of urine, you must discard the collection and start over.” Um. Sure.
[Quick PSA for those who use Tri-Core labs: definitely schedule an appointment online if you need to go there. It is SO convenient, and you get to line jump. However… I found out the hard way that you can only check in 10 minutes prior to your appointment. If you arrive earlier than that, you will have to wait to check in, just like a regular schmoe.]
When I saw the results of the urine collection, at first I was taken aback – because I read the damn results wrong. My previous 24-hour protein was in the 300s. This (I thought) said 2300. “Oh crap. Here we go. Here’s where the treatment stops working.” Uh, duh. That was the VOLUME, not the protein. The protein had dropped again, to 262 mg. Obviously this is good news but the doc is still curious as to why the creatinine is increasing in light of the other markers looking good.
I started reading up on the side effect of Kyprolis, the chemo drug. In the consumer section, it lists 44 (!!) “more common” side effects, plus a host of other “less common/rare” reactions. I didn’t see too many issues listed that I’m experiencing, with the exception of fatigue. (Those close to me might also agree that I have the side effects of “hostility” and “irritability,” which I can’t argue, although I think it’s safe to say I had those before I started on this med.)
But under the “healthcare professionals” section, it lists “increased creatinine” as “very common” with Kyprolis use. One study stated that 25% of the participants had increased serum creatinine. So perhaps it’s just medication-induced and not an actual decline of kidney function, because if that were the case, the urine protein would be increasing instead of decreasing.
Interestingly, Kyprolis can also cause acute kidney injury. Ironic, since I’m taking it for kidney disease. But I’m not terribly concerned about that since I’m monitored so frequently. I feel pretty confident that we would see things trending in the wrong direction before it got out of control. Again, I don’t know what the next step would be if I had to discontinue the Kyprolis, but hopefully I won’t have to find out.
I got my second COVID booster shot (4th shot total) at the end of February. As I was reading up on the CDC website about their recommendations for immunocompromised people, I found information on Evusheld, a prophylactic set of shots to help prevent COVID infections. I emailed my nephrologist in Pennsylvania to get her input on its safety and effectiveness, and she said they were using it on their kidney transplant patients and recommended I get the shots. I emailed my primary care doc to ask if I could get them at his office but his assistant said that since it was an “infusion” (I thought it was just two shots), I would need to get it through the infectious disease department. She said the doctor had put in a referral for me.
When I went to get my infusion that week, I asked the nurse about it, and she said they were doing the shots there so I could probably just arrange to have it done during my normal infusion time. (And she DID clarify that it was NOT an infusion but just two shots, which is what I had read.) She said that they would first do blood work to see if I have the COVID antibodies (immunocompromised people often don’t respond as well to the vaccines as others), and if not, they would schedule me for the shots. She said it would be ideal to do it the same time as my infusion because I’d have to wait around for an hour to make sure I didn’t have a reaction.
As I was sitting there, I messaged the oncologist, and he was completely on board with the Evusheld. He said, “I’d get it if I could!” So he also put in a referral.
The woman from the infection disease department called me that very day to schedule me, but I had also read that one should wait a minimum of two weeks post-latest COVID booster so as not to minimize its effectiveness. They didn’t have their schedules out that far so she said she would call me back.
Back at the infusion center the following week, they did the antibody test, which turned out to be positive—meaning I have COVID antibodies. Yay! But because I’m immunocompromised and because I’m a health care worker around scads of people all day, they went ahead and approved and scheduled me for the shots.
This past Wednesday when I arrived at the building where the cancer center is housed, I walked over to the woman doing the COVID check-in/screening as I’ve done now for two years, and she said, “We’re not doing screenings anymore. I’m just here to make sure people are wearing masks.” That really surprised me. I mean, I get that mask mandates really don’t exist anymore, but this is a cancer center. When I mentioned my surprise to the nurse that day, she didn’t even know they had stopped screening people. She said it must have been a very recent change.
My creatinine had dropped a little to 1.5, my eGFR was 35, and my hemoglobin was 10.3. So… steady as she goes. And I was in and out of there in about an hour. Usually I’m there for about two hours, so it was a nice treat to get home a bit early.
I had lab work done yesterday for my upcoming appointment with my endocrinologist. I got the results back today. My TSH is low so there might be a med adjustment in my future. The good news is that my A1C dropped pretty significantly from 7.6% pre-Trulicity to 6.1% on Trulicity. The 6.1% equates to an average blood sugar of 128. This makes me question the accuracy of those at-home monitors because I have not had a blood sugar reading, even fasting, in the 120s. But I was very happy to see the drop. It could still be lower, but this is a good start.
Yesterday I had to return for the Evusheld shots (I didn’t push trying to get them scheduled on my regular infusion day. I was happy enough to be approved. I didn’t mind going back for this.) So… as I said, two days prior, no more COVID screenings. When I went back yesterday, I waved and said hello to the screener and headed for the elevator. She said, “Oh, step over here please. I need to take your temperature.” I said, “Really?? I was just here Wednesday, and you said we didn’t have to be screened any longer.” “Yep,” she said with a shrug. “Now they want us to do it again.” Clearly no one knows what the hell is going on. No big. Screen away.
I went up to the second floor to check in with infectious disease and paid my copay, then the nurse took me back down to the first floor and to the infusion center where I normally go on Wednesdays. I had to sign a consent form that specified that the drug had not yet been approved by the FDA and that it was being administered under the emergency use authorization. The form was clearly made for something else at some point, because wherever the word “Evusheld” appeared, it was literally written in over something that had been whited out. I found one instance where they had forgotten to white out the original: sotrovimab, a monoclonal antibody treatment used for those with COVID-19 infections. Interesting.
There were two of us awaiting the shots (in separate rooms of course), and the nurse kept running back and forth between us apologizing for the delay, stating that the pharmacy was backed up. No problem. I had nowhere to be (story of my life). He came back with the shots, I dropped trou and got one shot in each of my flabby cheeks. I then had to wait for an hour to make sure I didn’t have a reaction (although rare, cardiovascular issues have been known to occur).
Of course I was scrolling through stuff on my phone while waiting (gee, it’s much easier to do when not wearing iced gloves and using a stylus!), and I got an email from Lovelace that my copay for that visit had been processed. Okie dokie. Then I got two more emails that my payment had been processed. Hmm? That was odd. I opened up the first email: “Your payment of $1073.12 has been processed.” The second email: “Your payment of $1068.12 has been processed.” Wow. Okay, I knew I was going to have to pay these outstanding amounts sooner or later, but I was surprised they didn’t notify me of the impending payment or give me an option as to how I wanted to pay or anything. Nope.
But then… I looked at the emails more closely. That’s not my credit card number. What the heck?
While I was sitting there, I called Lovelace because I thought maybe there was something fraudulent going on. The woman with whom I spoke wasn’t able to give me much information, just that the account said, “Oncology Copay Assistance Payment.” I asked the nurses if they knew anything about it, and they didn’t. One asked if I had signed up for any kind of support services, and I said not to my knowledge. The only thing I could think of was when I took that Revlimid pill for one cycle. The nurse administrator talked to me at that time about assistance programs if my insurance didn’t cover it (which it did); I feel pretty confident I didn’t fill anything out or sign anything, and dang, that was nearly a year ago now.
This later showed up in myChart as well but again with no further information. I googled “oncology copay assistance payment,” but it’s one of those things where so much information comes up that it’s essentially useless. Part of me would like to call my insurance company for more info, but the more rational part of me says “Don’t you dare.”
Don’t get me wrong—if some entity out there (or even if it’s just my insurance) wants to pay $2000.00 toward my medical bills, I’m not going to argue. It’s just that a) I have a curious mind, and b) I hope that my receiving this payment doesn’t take away from someone else receiving it. Not to sound like Mother Teresa or anything—it’s just that I’ve budgeted for all this stuff, and I’m very fortunate to be able to afford it if needed. I know not everyone can.
Last thing: I was messaging back and forth with a friend recently, and she inquired about my health. She told me she would donate one of her kidneys to me if needed. Wow. That floored me. I hope it never comes to that, and if it did, I can’t imagine I would actually accept that from her (assuming we matched), as she has a young child. But what an incredibly generous offer. I mean, that’s not doing it justice at all. I’m still floored. I haven’t given much thought to being a transplant recipient because one step at a time, but I really can’t imagine the reality of receiving a kidney from someone I know, or even just a live donor in general. It’s pretty overwhelming.