I was so looking forward to the in-person visit with Dr. A, and it didn’t disappoint. I found the hospital easily enough but man, it’s HUGE. Finding my way around once I got inside was challenging! Both times I’ve been at the hospitals (two different ones), some kind soul has seen that I was clearly lost and pointed me in the right direction.
I was lucky enough to meet a few of the women I’ve been speaking with via phone and email to get this whole process set up. I saw the case manager in her office behind the reception area and asked one of the women to please thank her for me for all her efforts in helping me. She said, “No! She wants to meet you!” The case manager came out, and no joke, we both said at the same time, “I’d hug you if I could!” She was very nice and said she was very happy that I was able to make it out here.
Dr. A is young, tiny, and aggressive. She was in her COVID-safe garb: mask, gown, hair net, and safety glasses that kept fogging up and frustrating her. She too was happy I was able to make it out to Pittsburgh and stated the crux of my issue: providers don’t want to treat this disease because it doesn’t fall under their scope of practice. Nephrologists don’t work with chemotherapy drugs so they refer out to hematology/oncology. Hematologists work with blood disorders; oncologists work with cancer. This is neither. I said that I was well-versed in this catch-22. It’s why I’m here.
We went through all my meds, and she debated for a bit before deciding what to do about the blood pressure medication. She decided that for now while I’m here in Pittsburgh, she’s putting me on a new medication. Once I get back to Albuquerque, she’ll put me on a different medication that is similar to lisinopril and offers good kidney protection. She’s holding off starting that now as it can also cause facial swelling (similar to lisinopril) but less often, and she doesn’t want me to have a recurrence while I’m on the road. Again, there’s no confirmation that the medication caused the swelling but it’s a possibility. She reminded me that should that happen again, I need to get to the ER immediately. Noted.
Then she reviewed my labs. My hemoglobin is still quite low, which surprised me because I had an Aranesp shot the day before I left to come out here. At that time, I believe it was 9.4 so I would have expected it to be higher than that. But the day of my infusion it had dropped to 8.3, and the labs Tuesday indicated 8.9. She did explain that Aranesp can take a little while to bump up the hemoglobin but it’s been nearly two weeks since the shot so that was disappointing. I had forgotten to even mention it at our last video visit that I was getting the EPO injections; she said she was going to recommend that I start those so she was glad to hear I’m already getting them.
On the plus side, my urine creatinine levels have dropped (this is a good thing; lower is better), and my kidney function has now improved from a GFR of 32 to 47. She said this is due to the prednisone. She likes to use analogies, and the one she used for this is that prednisone is like a fire extinguisher that puts out the “hot spots” of inflammation in the kidneys. “But,” she said, “people can’t stay on prednisone forever.” Amen. I still have at least two to three more months on the stuff, and I can’t wait to be done with it.
She said that the Rituxan injections, if successful, will further reduce the inflammation and hopefully “deactivate” the plasma cells that are damaging the kidneys. I asked her if this was merely just a matter of buying time and, if at some point, I can expect kidney failure. She said hopefully not but that (as I suspected) there are no long-term studies yet because this treatment regimen is too new.
But… she did say that if the Rituxan doesn’t work, there are two other medications they would try (individually). They are also both chemotherapy drugs that are stronger than the Rituxan and therefore have more side effects. They also require more treatments than just two. She said she’s only had a few patients that’s she’s had to go to plan B with and no patient yet who’s had to go to the last option—but she hasn’t had a lot of patients with this disease to start with, of course. She did say that she has one patient who had a kidney transplant, and then he developed this disease in the transplanted kidney. (How unfair is THAT?) He’s not responding to either of the first two meds, and they’ve opted not to pursue the third just because it’s not worth the side effects (he’s in his 70s). He will be going on dialysis soon. Still, I’m glad to know there are other options if this doesn’t work.
Then she said to me, “But try to think positively!” I told her I’m not worrying about this; that’s just not my nature. I’m going to do whatever I can do but other than that it’s out of my hands.
She said my immune system will be crap (I’m paraphrasing) for the next six months, so I’ll be on an antibiotic until the end of the year. This does make me nervous as we will be starting back to seeing patients in clinic very likely in July. But I’m just going to do everything I can to protect myself–gloves, gown, face shield, mask. What more can I do?
I asked her about the prevalence of this disease and my previous understand was way off. I thought it was 0.17% of the population at large, which would still be rare. But no. It’s much rarer than that. They found it in 0.17% of kidneys that had been biopsied at one university medical center over the course of 20 years. So… VERY rare. Much more so than I originally thought.
The plan for now is second infusion of Rituxan on Wednesday, repeat blood work and 24-hour urine in one month, video visit follow-up in one month, a random urine test once a month for a year, change the blood pressure medicine when I get home, antibiotic for the next six months, and keep my fingers crossed.
I asked her to please thank Dr. C for me, as she was on the one who responded to my phone call and my emails. Without her, well, truthfully, I would have moved on to the next author of the study. Dr. A was listed last out of four—I would have reached her eventually! But I am very appreciative of Dr. C for reaching out. She didn’t need to do that. Dr. A said Dr. C had hoped to meet me but she was working at a different hospital that day.
I thanked Dr. A as much as I could without sounding like a groupie. She didn’t have to take my case on. Her staff didn’t have to take it on. I’m sure it’s been a pain in some respects for them. She said, “If we can help you, it’s our blessing.” (I’ve gathered from our conversations that she’s religious.) I left there feeling pretty optimistic and happy to have a semi long-term plan.
Today, coincidentally, I had a video visit with my Albuquerque nephrologist. I updated her on everything, including the change in my blood pressure meds. She seems content (bordering on relieved) to take a back seat to Dr. A. Works for me! I’ll see her again in three months, also with repeat blood work and 24-hour urine test. I need to print out all the lab results from Dr. A and get them to the local doctor as she can’t access any of that information. The patient portal her practice uses isn’t the most user-friendly, and at present, there’s no way to upload information there.
I know this is already long but just a few words about Pittsburgh. It’s really pretty here! Very green, lots of bridges (nearly 450, per google), old churches and architecture, brick streets, tree-lined streets. Completely different than Albuquerque. I didn’t know what to expect but as I’ve had some time to drive around, it seems like a really nice community. I’ll have to come back here someday, NOT in the middle of a pandemic, and NOT while I need to stay isolated, so I can see all the city has to offer. I’m adding it to the list.