If you've missed any parts of this saga, you can catch up with the links below:
Part 1 (April & May)
Part 2 (June)
Plus (Baby's First Coloscopy)
Part 3 (July)
Part 4 (August)
Part 5 (September)
Hello, and welcome to Month Six of trying to nail down causes for Hubby's Left Lower Quadrant pain (LLQ) and Chronic Kidney Disease (CKD2).
When typing up a previous month's post, I needed to look up the type of magnesium he was taking for his insomnia, and there just happened to be a Google result about magnesium saying that low magnesium levels - hypomagnesemia - could result in muscle pain, which may be a reason for that mysterious LLQ. I asked Dr. L to add a test for mag levels in his next round of labs.
He was supposed to return for a follow-up with the Urologist on October 7th (which had already been rescheduled from October 4th, since we were supposed to be out of town), but we were also out of town on the 7th. I called them Friday morning, but only got their voice mail, so I left a voice mail that we needed to reschedule... As of today (the day before Halloween), we never received a call-back to reschedule the appointment, so frankly, we're just gonna let it go. It's highly unlikely that any of his problems are urology-related, so why bother dropping a $75 copay to be told nope, nothing wrong with you here. We got the result of the FISH test, which was negative for any cancer. The cytology report from his Peeper View was negative for urothelial carcinoma. Benign urothelial and squamous cells present. Red blood cells, crystals, and polymorphonuclear leukocytes {white blood cells that fight infection and inflammation} were present.
The following week, he got his lab work done, and unfortunately (well, fortunately), his magnesium levels are fine, so it doesn't look like hypomagnesemia is an issue. Normal mag levels are between 1.5 and 2.8 milligrams per deciliter, and he's almost right in the middle at 2.0 mg/DL.
Everything else was relatively steady - no drastic changes. His eGFR (Estimated Glomerular Filtration Rate) is bouncing a little bit. An eGFR is a test that measures the level of kidney function and determines the state of Kidney Disease. It is calculated from the results of a blood creatinine test, in conjunction with age, body size, and gender.
The lower the eGFR, the worse your kidneys are functioning, and there is risk for Chronic Kidney Disease to progress to Kidney Failure. Right now, Hubby is in the low end (high end?) of Stage 2, kidney damage with mild loss of function, with 60-89% of kidney function. Once you get to less than 15% eGFR, you are in active Kidney Failure, and that's when things like Dialysis and Transplant come in. It is important to remember that eGFR does decline with age, so a low eGFR in an older person doesn't always mean CKD. But hubby's only 50... he's not "an older person" quite yet.
Things got a little testy at his October follow-up on the 22nd though. She reviewed all of his labs. His eGFR went up a smidge, to 66% (they've been between 71% in May 2023 and 61% in September 2024). eFGR can't really be fixed... Diet and exercise won't cure him and bring him back up to 100%. But things can be done to to slow down the damage, or stop it altogether. Diet, exercise, medications, lowering blood pressure, etc. Dr. L shared the results of the Natera DNA test - he is genetically predisposed to Cystinuria, a rare condition in which stones made from an amino acid called Cystine form in the kidneys, ureter, or bladder. Cystine is formed when to molecules of this acid are bound together. This condition is passed down through families, inheriting the variant from both parents. About 1/7000 people have Cystinuria. Most peoples' bodies simply deal with the cystine, but those with Cystinuria will deal with build-up that creates crystals or Cystine Stones. Some people experience Flank Pain in the side or back, often on one side. Pain could be felt in the pelvis, groin, genitals, or between the upper abdomen and back. To keep those stones from forming, you should drink 6-8 glasses of water a day, including at night (to pee at night to keep the pipes clean). Making the urine more alkaline may help to dissolve crystals, which can be done via potassium citrate or sodium bicarbonate {eating less salt can also help}. This is a chronic, lifelong condition, and without any treatment or diet changes, these crystals or stones commonly return. Chronic Kidney Disease is a possible complication of Cystinuria.
Dr. L doesn't think that the Cystinuria is solely responsible for the CKD, but it's good to know. Because of the lack of "good news" in the gene panel, she stated that the next step needs to be a Kidney Biopsy. And as soon as she said that, I could see Hubby just shut down. His body language completely changed, crossing his arms, crossing his ankles, tucking his neck down, clenching his jaw, and just shaking his head. I don't understand why this is such a No-Go for him, especially after all of the other things he's dealt with in the past few months. Is it a needle thing? Is it a pain thing? I don't know... I'm hopeful that I can talk him in to it, but he put up a stone wall and there's no way to break through to this obstinate SOB when he gets like that. I love him, but when he digs in, he DIGS IN.
I asked Dr. L if we could simply maintain for six months and see what happens, like... let's not do follow-ups every month, let's not continue to throw biopsy around, let's just live our life for the next few months and see what happens. My plan is to do all the other stuff (that we already should have been doing, to be honest): change up the diet, increase exercise, get him to drink more water, etc. She tried to plead her case with him, reviewing all of his labs and explaining why it's important, what will happen if his eGFR gets too low, but he wasn't having any of it.
So for right now, we're going to put the idea of a biopsy on the shelf for the rest of the year, and we'll work on all the other things, which frankly will be harder to deal with! Lord I have a fight in front of me, but I'm going to get him to take his meds daily, check his blood pressure twice a week, get him taking a walk at least once a week (hopefully more), get a better diet, and get him to drink two bottles of water per day. It's gonna suck, and I'm going to get extremely frustrated with him, but I'm out of options. He's decided that his health isn't a priority, but I'm not ready to give up. By the end of the visit I was so fucking frustrated, I just shut down... I had tears in my eyes as we walked back to the car. He ended up behind me, and I don't know if that's because he was having some emotions to deal with, or if it was because I was just so shut down that I was walking faster than I normally did. Either way was fine with me, he didn't need to see my tears.
We picked up lunch at Chick-fil-A and brought it home with us, not saying much during the drive, or at home either. Usually, he'll come in to my office every so often for a visit hug, but I think he only came around once. I didn't make dinner, since I was still full from CFA, but make a little plate of cheese and crackers and took it to bed with me early. I zoned out and binged Hulu for hours, hoping to shut off my brain and fall asleep, but no such luck. When I finally turned off the TV around 11:30, my brain went right to the What If... scenarios, and I lost it and just cried. Around midnight, I curled up with X for a while, hoping it would numb my brain and make me sleepy, but still no luck. After about a half-hour I put my tablet away, and I think I probably fell asleep around 2am.
The next morning, October 23rd, I'm still frustrated and emotional and sad and pissed, but I guess I now have a mission. I need to create a plan for him to follow to get all of that diet/exercise/med stuff done. And I'm probably gonna have to be a bitch about it. And he's gonna push back because he's obstinate. And we're gonna yell at each other because we're emotional. And we're gonna both have hurt feelings because we love each other. But I don't fucking care. Because I have to care for both of us, since he doesn't give a shit about his health. I mean, if his eGFR dropped from 71 in May of 2023, to 66 in October 2024, he'll be in dialysis by 2034.
So, at this point, I think I'm going to put a pause on the monthly updates, unless something crazy happens. We set up a three-month follow up with Dr. L for January to see what's happening, and I'll check in with you guys at that point to let you know what's happening. I'm hopeful that in that time, he'll at least have a normal blood pressure, and no loss of eGFR.
