Year Four

It’s been a while! I hope the last three months have treated you well.

When I last wrote, I was just getting over COVID. I’m happy to report that I’ve had no lingering symptoms or issues. And I got THE JAB today—the second bivalent booster recommended for old farts and people with puny immune systems. I guess I’m both.

I’m thrilled to say that I can see! I got my second cataract surgery done in mid-May, and I think it was even better than the first. For a while (and still on occasion), I was getting a flash of golden light on the left eye when I would move my eye a certain way. It happened several times a day. When I went back for my first follow up on the right eye, I told the tech about the left. He said, “You’re still getting that? [Pause.] Oh, that’s normal.” Ha. Yeah, I could tell by your first reaction. Of my own accord, I started the drops again in my left eye when I started them in my right. Either the drops helped or the passage of time did, and it’s rare that I notice that anymore.

At my last follow up for the right eye, they gave me some loaner glasses that were pretty spot on. They were for distance only, so I still had to whip out my Dollar Store cheaters at work when looking at the teeny tiny serial numbers on hearing aids. But the loaners were great for driving.

I was told that since my vision change was due to a “medical” issue, my insurance would pay part of my first set of glasses. Sweet! Until I realized they only covered them if I went through an optometrist. Nope. Even with the insurance portion, they would be way too expensive. Sam’s Club and Costco were about $300 a pair. I walked into Eyemart Express and walked back out when they said it would be a 90-minute wait.

Online eyeglasses it is! I got two pairs of bifocals from Zenni for right at $100 each. So far I’m very pleased. Quick process, quick shipping, and they seem to be very good quality. Hopefully they will hold up well, and hopefully I’ll remember to keep them out of reach of my dog Moxie, who has so far eaten two pairs of Dollar Store glasses.

I realized that my old prescription snorkel mask and swim goggles weren’t going to work for me anymore.  Such a bummer! I recently ordered another snorkel mask shortly before my vision went in the toilet. It’s never even been used. Oh well. Small price to pay for being able to see well. So…another snorkel mask has been ordered, along with new swim goggles.

You know how we always hear (or say), “Don’t take your health for granted”? I mean obviously it’s hard not to. Even with this vision thing, it’s just back to normal so it’s almost like it never happened. But I can remember one trip in particular when I delivered some stuff to an animal shelter last December (before I knew I had cataracts). I was driving home, and everything was just brown. Like I was in an old western. I even stopped at a drug store and bought eye drops thinking that might help.  I remember being rather depressed about the whole thing because I didn’t know what was going on. I had already seen the (first) eye doctor who said everything was “fine.” I just kept thinking, “What if this just keeps getting worse? Audiologists really can’t be blind.”

I’m so grateful for those eye surgeries. Absolutely amazing and life changing. But again, so easy to take for granted. I’ll try not to.                        

I have been playing around with my blood pressure medication again. My doctor is in the loop on this, and he knows I keep good records of when I’ve started or stopped what. I had been off the lisinopril for about six weeks because my creatinine had gone up. I probably said this before but I don’t think it was the lisinopril causing the increase. My scientific reasoning for this? None. I just don’t WANT it to be because it works so well to control my blood pressure. And, for reasons I don’t really know, it has some kidney-protective properties to it.

Without the lisinopril, my creatinine came down to about 1.4. I started myself back on it at half the dose I normally take, and it stayed at 1.4. So I went back on my full dose. Still 1.4. I think that with this illness, anytime I get sick with something, it’s just going to throw my levels off, and it’s going to take longer than normal for them to settle back down.  

Then recently I decided to stop the nifedipine. To recap, prior to all this disease crap, I was on lisinopril for blood pressure, and that was it. Since I got sick, I’ve been on so many damn blood pressure medications it’s hard to keep track. But most recently I was on lisinopril, metoprolol, nifedipine in the morning and nifedipine at night. I stopped the evening nifedipine quite a while back, and I recently decided to stop the morning nifedipine as well. Part of that was just because I’m tired of taking all these damn pills, and the other part was the cost. Even with my insurance, that drug is pretty expensive. So far, my blood pressure is fine on just the lisinopril and the metoprolol. AND…my ankles aren’t getting swollen any longer since I went off the nifedipine! That is a serious bonus. Swollen ankles are definitely unsightly, but more so, it’s very uncomfortable.  

Speaking of med costs, I compared all my pill-form medication costs between my insurance copay and what it would cost me to get them online. With my insurance, a three-month supply of my prescription meds costs me $204.00 every 90 days. Online, without using my insurance, my cost is $66.00. Geez, that makes perfect sense, doesn’t it? So here’s a plug for costplusdrugs.com. Definitely check them out if you haven’t.

My oncologist kept nudging me about getting another kidney biopsy done, which I had already discussed with my nephrologist. Because of my insurance and the hospital where it must be performed, the availability is limited—which I told the oncologist. I don’t understand why doctors put the patients in the middle as the go-betweens. Why couldn’t he just pick up the phone and call the other doc to see what was going on? I feel like a specialist is going to respond to another specialist far quicker than they’re going to respond to a pesky patient. But, regardless, it’s scheduled for mid-July. Another long day (6 – 7 hours) in the hospital.

I’ve also started getting more notices from my insurance that they are not paying for my chemo because there’s no supporting evidence that it’s benefiting my illness. Why the 24-hour urine test isn’t enough for them, I don’t know. But it explains why my oncologist kept poking at me to get the biopsy scheduled. (Doesn’t explain his inability to pick up the phone and call the nephrologist himself. But hey.)

When I got the referral and lab work forms for the procedure, it said I needed to have a driver. I don’t know why. I’ve had it done twice before, no driver required. It’s not a sedated procedure. I called the office for clarification but had to leave a message. The medical assistant returned my call and left me a message saying in a very longwinded way that she didn’t really know one way or the other if I needed a driver. Couldn’t she have asked the doctor before she called me? Anyway, I’m driving myself. If I need a driver, I’ll call Kyle. But I’m sure it will be fine.

I had a visit with my PCP about a week ago. Those appointments are a little bit useless. When I saw him in November of last year, and when his assistant said, “When do you want to see her back?” I said, “A year.” He said, “Six months.” But he really didn’t do anything, nor did he need to. (He did interrupt me twice when I was trying to tell him that the protein in my urine was now unmeasurable—once to tell me the drugs Michael Jackson overdosed on, and then to tell the drugs Prince overdosed on. Why? No idea.) He is willing to take over prescribing meds for me that my former Pennsylvania nephrologist was prescribing. They’re just “basic” meds, for high blood pressure and that damn heartburn. And now he wants to see me back in the fall, “around flu-shot time.” Maybe he wants to talk about the overdose deaths of Tom Petty and Taylor Hawkins. I don’t know.

Once you have a chronic illness, you don’t really have much need for a primary care doctor. Assuming the specialist is a good one, he or she can manage most of the stuff the primary care doctor can. My oncologist basically told me that. I said something about needing a PCP referral for another unrelated specialist, and the oncologist said, “I can put that in for you.” Works for me.

About a month ago, I ran into someone I hadn’t seen since before the pandemic. As soon as I saw her, I knew she was on prednisone. It was so odd. I could tell by the way she walked, by her moonface (even behind a mask). During our conversation, she mentioned an autoimmune disease she had been diagnosed with, and that one of the meds she was on was prednisone. Bingo. We traded horror stories. God, that damn drug. It’s so good for so many things but it will just fuck you up. Or try to kill you.

I was diagnosed in February 2020, and of course COVID hit in March 2020, so these two things are inherently intertwined for me. It’s hard to believe I have officially entered my fourth year of treatment.  In some ways, time has gone by so fast but in others, it’s hard to remember a time when infusions and lab work and a million doctors’ appointments weren’t part of my life. I’m so hoping the upcoming biopsy shows regression of these errant plasma cells. I mean, it HAS to be better, right? I’m definitely feeling so much better than I was at my last kidney biopsy in 2020.

If things have improved, I hope that will mean further reduction in the chemo schedule, maybe down to only once a month. How great would that be? Less fatigue, maybe? Less heartburn? And another day a month where my work schedule isn’t affected? Yes please!  Maybe a small step in the direction of things getting slightly back to normal.

Speaking of back to normal, over Memorial Day weekend, two friends from California visited. I’ve known Lori and Chi for well over 40 years. This was the first time since COVID/this disease that I have really done anything social. It was so much fun. We took the backroad up to Santa Fe, with the obligatory stop in Madrid, lots of shopping (they shopped, I strolled. I’m not much of a shopper). They got introduced to green chile stew and Frito pie. We went to Old Town, then had a nice outdoor dinner at El Pinto (in the past, I was more impressed with the atmosphere there than the food, but they seem to have stepped it up! The food was really good!). We stayed up late gabbing and getting caught up. It was so nice to see them and to do something even remotely social.

I am definitely more of an introvert than an extrovert, which the early years of COVID confirmed, and I do pretty well on my own. But it really did feel good to see my friends. I guess I need to make the effort to get out more. Now that the weather is warmer, I can add outdoor dining to the list. Kyle’s band has some upcoming outdoor gigs so I will go to those. Yes I’ll still wear a mask but at least I can see other humans and have a little bit of social connection.

And depending how things look in the fall, I may even consider going on a trip—a trip that requires a flight, not a drive to a neighboring state. We’ll see. It’s dependent on a lot of things, not the least of which is finding care for our dogs. But the last trip I took was in November 2019. I absolutely love to travel, so not being able to go anywhere has really been disappointing. I don’t have a destination in mind yet. Someplace easy to get to, and of course, someplace where I can go in the water. I can’t wait to be in the water.

Kidneys in the News!

“Troubled U.S. organ transplant system targeted for overhaul”

https://www.washingtonpost.com/health/2023/03/22/transplant-system-overhaul-unos/

After decades, UNOS, the agency running the country’s organ transplant network, is going to lose its stranglehold on the transplant program. I think this will be a good thing, since they’ve had many problems running the program efficiently. This has cost people their lives. Am I confident the US government will get things up to snuff? Maybe not. But something needs to change.

An interesting note in the story: “UNOS’s multiyear contract comes up for renewal this year. It is funded mainly by fees patients pay to be listed for transplants.”

Wait, what? You have to pay to be listed as a potential recipient?? I looked this up, and according to the National Foundation for Transplants, yes. Potential recipients must pay 20% of the transplant cost to even get on the transplant list! For a kidney transplant, that 20% equates to approximately $83,000!!

What the serious hell.

Their website also states, “Transplant patients may also be required to provide financial proof that they can maintain the organ they receive post-transplant. Patients can be denied an organ they are matched with if they can’t afford the financial maintenance of the organ after surgery. Anti-rejection medications can run thousands of dollars per month.”

Thousands of dollars per month. Ay y iyi.

No wonder “Nearly 104,000 people are on waiting lists for organs, most of them kidneys; 22 people die each day awaiting transplants, with poor and minority patients generally faring worse than affluent and White people,” per the Washington Post article.

None of this affects me, as I won’t even be eligible for a transplant, but god. What a system. I shouldn’t even be surprised.

“Relapsing and Remitting Proliferative Glomerulonephritis with Monoclonal Immunoglobulin Deposits in Association with Infection and Vaccination: A Case Report.”  Kidney Medicine Journal, Nov 2022.

This was an interesting article and unusual case of a woman who had recurring PGNMID after infections and immunizations. She was initially seen in approximately 2009 after an upper respiratory infection. Her symptoms were consistent with kidney disease, and a kidney biopsy revealed glomerulonephritis. The article said she was treated “conservatively” but doesn’t say with what. But all resolved. Then 13 years later, she developed gastroenteritis and again had symptoms consistent with kidney disease, with a lot of protein in her urine. Another biopsy was performed, and she was diagnosed with PGNMID. They compared the second biopsy to the first, and yep, they were essentially the same. (The article doesn’t specifically state this, but I’m guessing that in 2009, her nephrologist(s) probably weren’t even aware of PGNMID.) She was again treated conservatively, this time with blood pressure meds and a diuretic. Within three months, her labs were back to normal. THEN, she got her third COVID vaccine (first booster? I don’t know. The article says “third COVID vaccine.”) and again all went haywire. This time she had 26 grams of protein in her urine. (And my docs freaked out when I had ten grams!) She was treated more aggressively, with a taper-down dosage of 60 mg prednisone over five months. (Lady, you have my sympathies.) But it worked…in those five months, all went back to normal.  

The authors highlighted that there is still much to be known about this disease, including what may trigger it. They do note that identification of this disease is on the rise, and that COVID-19 infections have been documented as a trigger.

And a feel-good story:

“This Chicago doctor donated her kidney to a woman in Virginia she’d never met” https://www.cnn.com/2023/04/06/health/doctor-donates-kidney/

A nephrologist donated her kidney to a woman, and in turn, the recipient’s husband donated his kidney to someone else. A two-fer.

On a sad note, we lost our Della dog about a month ago. She was diagnosed with cancer in January and had a good quality of life until the end. She was a very sweet mellow girl. She came from a truly horrible hoarding situation (I’ll spare you the details). The very fact that after being so mistreated by a human that she would even begin to trust us and love us in her own quiet way just shows that we don’t deserve dogs. They are truly a gift. We miss her terribly, especially my mother, who waited her whole life to finally have a dog of her own. They had a very special bond.