The Saga of the Chronic Kidney Disease... and some Abdominal Pain (Part 6 - October 2024)

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. 

The Saga of the Mysterious Abdominal Pain Remains Unclear (Part 3 - July 2024)

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)

So, an upside of Hubby's continued (unofficial) leave from work was that I was able to run the Celebration Run 5k in Jacksonville on Independence Day. It was hot, as always, but nice to just get away for a day and not have to worry about doctors and appointments and labs and pee and meds and, and, and.... I carried a medium flag this time (not the big boy on the flagpole), and it was better. I finished at almost exactly one hour (1:00:19), and I'm fine with that. This was cathartic, not athletic. Afterward, I hit up Dollar Tree and Walmart for a few things, had delicious cheese curds and custard at Culver's for lunch, then headed home. 

I love a big medal

That Friday, he did another round of bloodwork and 24-hour urine collection, prompting Dr. L to change his blood pressure meds. 

He was set to go back to work on July 8th but another round of insomnia showed up and pushed his return back to June 11th, and it was good for a whopping two days. More pain showed up and he skipped work on Saturday - Monday. It sure made going to Bridge of Lions in St. Augustine much easier, though! I finished with a better time of 58:00, went up to IKEA then had lunch at Cheddar's, detoured back to Buc-ee's before going home. 

St Augustine always puts on beautiful sunrises

Thank you to the random youngster who chalked this... I needed it!

We got his colonoscopy results - one of the polyps that had been removed was a Tubular Adenoma. That kind of adenoma could develop into cancer, but they got it before it did, so all is fine, and they want him to come back in 2027. 

On July 25th, he met with his new Primary Care doc, ARNP LeBlanc. She listened to everything he said, and then had her attending (Dr. M) come in, as ARNP LeBlanc was stumped. Dr. M was the first doctor out of all of the people we'd seen to suggest that his LLQ pain may be something like scar tissue or internal adhesion. And unfortunately, the treatment is to go back in and try to fix what might be wrong, or learn to live with it. But it's not really something that can be seen on X-Rays or CT Scans. They also recommended a Gastroenterology consult, and an MRE of the abdomen and pelvis (similar to an MRI). Unfortunately (but as expected) their poking and prodding brought on a new bout of pain, and he was away from work until August 7th. 

The Saga of the Mysterious Abdominal Pain Continues (Part 2 - June 2024)

If you missed Part 1 of this Saga, you can go back and read it HERE. 

I took off the morning of June 3 so I could take Hubby to his Nephrology consult, and what an experience that was! Dr. L is this tiny little Asian woman, maybe in her 60s, probably 100lbs soaking wet. She listened to his symptoms and reviewed previous labs he completed. Before the appointment, Hubby submitted a urine sample and the results were the same (Proteinuria). His blood pressure is responding to the Amlodipine (prescribed last month by Dr. K); he’s now in the high 130s/90s range. She asked about his medical history, what meds he takes, normal stuff. Any time we’d say something she didn’t like, she’d crinkle up her face and then lightly lecture us (like, you don’t go for walks at all?!? Or Oh, you shouldn’t eat ham sandwiches, they’re full of salt and nitrates! Or You should never eat fast food ever again and switch to a vegan diet!!! Okay that last one was an over-exaggeration). Like, yeah, we get it. We know that we don’t eat healthily. But it didn’t feel like there was any empathy or caring to her admonishments; it came across more like nagging. She also seemed a bit rude and disdainful about the fact that his current General Practitioner was a virtual doctor; she called Dr. K a “Doc in a Box” in a dismissive little way (kind of a she’s not a real doctor because she can’t touch you remark). Neither of us were huge fans of her bedside manner (spoiler alert, she’s growing on us).

One interesting thing that she discovered, though… She went back and looked at all of the labs from when he was in the hospital for his appendix last year, and he had Proteinuria then! None of the doctors ever said anything! (My guess is that, since it wasn’t appendix-specific, they didn’t care at the time). So, he’s actually had this problem for much longer than just the past month or two… we only discovered it because of an unrelated pain issue. 

At the end of the visit, she put in orders for 13 different blood tests, plus a 24-hour urine collection, and recommended a possible change to his Blood Pressure meds (one that would have more benefits for his kidneys than what he’s currently taking). We picked up the Pee Jug and took it home with us – the plan is to start immediately, finish on Wednesday before his Colonoscopy Consult, then take the jug over to the lab afterward. 

Stress and worry came to a head later when we got home… Hubby started his 24-hour "pee clock" at 10:44am, which meant that his last pee would be around 10:44am the next day. Unfortunately, his GI (coloscopy) consult was at 11, and we had to leave the house by 10:15 to get there. I kept joking that he could pee before we left at 10:15, and bring it with us in case he had to pee again before 10:44, but he was adamant that he wasn’t going to leave the house until 10:44. No matter how I tried to explain that this was a stupid idea (in nicer terms, of course), he kept pushing back (he’s an obstinate SOB), accusing me of demanding he “pee on command” (which I wasn’t) and that he can’t do that (doesn’t matter, since I wasn’t asking him to). Finally, I just threw up my hands and said fuck it and let him stew. We put it behind us by dinner time, with him apologizing for taking his stress out on me. 

The next day, we packed up his jug nice and secure, with some ice packs to keep it cold, and headed over to his GI consult. This ARNP had such a great attitude, with a good sense of humor, even going as far as to recommend that we watch the episode of Good Mythical Morning when Rhett & Link got their Bro-lonoscopies. 

We got him scheduled for his coloscopy on June 20th and got a personalized hand-out of what pills and drinks he’ll need, when to drink and take the pills, and what to expect during the prep and actual procedure (but that’s a post for another day). Then, back across town to the lab to drop off the pee, though it was way too busy to stick around for bloodwork (it was past lunch time and we were both hangry). We picked up food from Sonic and headed home. We’ll pop over to the lab in a few days to do the rest of what is needed. 

On Wednesday (June 5th), we met again with Dr. K and filled her in on the events of the past week or so. She found it interesting that he’d been dealing with Proteinuria since last year, and no one told him about it. She was okay with Dr. L taking the lead on his care, since it was seeming like there was a lot of kidney-related care that was needed, but asked that we continue to keep her in the loop with lab results and scan results. When we complained to Dr. K about Dr. L’s bedside manner she suggested that we ask for a new doctor within the practice (later, after discussing it again, he decided we should give Dr. L another chance, just in case this was a one-off bad day or something). 

After another night of insomnia (oh, that better not be coming back!), we got labs done again, and the high protein (1200mg/day) was still there, as well as a positive hit for random antibodies (nothing specific). His kidney function has dropped from 75% in 2023 to 66% in 2024. Dr. L reminded us to watch his diet (low sodium, no fast food, vegetarian options, no prepackaged food) which may improve his blood pressure and help with weight loss – which in turn may decrease the Proteinuria levels. 

On Friday (June 7) he woke up with that mysterious Left Lower Quadrant (LLQ) pain again, really bad pain this time. And hasn’t returned to work since. He put in for a second leave of absence, but Dr. K fears it will be denied, because there’s no medical proof that there’s anything wrong with him. At a follow up appointment a few weeks later, she said again that she was worried about it being denied (and she didn’t want him to lose his job because of this pain). The next Tuesday, he had a CT Urogram, which was a very easy test, and came back clean… No issues with the kidneys or bladder. Interestingly, they did see something on his L5 vertebrae, like an old stress fracture, but that has nothing to do with the current issues. 

On Thursday, June 20th, he had his colonoscopy, but wow… that was such an adventure in what not to do that I have a stand-alone post about that! 

We got lucky and scored an appointment for his Urology Consult the following week, and this doctor was a very direct, to the point, kind of man. He listened, but didn’t waste time, with small talk or unrelated questions. He palpitated the abdomen, fondled the goods (skipped the one-finger howdy, since his butthole was sore after his colonoscopy). He didn’t see or feel anything questionable, so he suggested a Cystectomy, where they use a small tube to go up the peeper and into the bladder, to see what’s happening up there. That’s set up for August. On the way home, I suggested that he take a few Tylenol before the procedure, similar to how women are told to take meds before an IUD insertion, just to be on the safe side (A bit of pressure is doctor-speak for This shit’s gonna hurt). Then, because I didn’t want him to be surprised on the day of the event,  I explained to him that Lidocaine would be delivered through a needle (spoiler alert… I was wrong abut the delivery method) into his peeper. He was freaked out, as any man would be! I patiently explained that Lidocaine is what the Dermatologist uses when they shave off my moles, and how it works instantaneously. The first shot would suck, but then he wouldn’t feel the other ones... I’m pretty sure he stopped listening at “they’re gonna put sharp needles on my dick head,” though. 

We followed up the next day with Dr. K again, and she was (rightly) frustrated that he still hadn’t gone back to work yet, and admonished him for thinking that he shouldn’t go to work when he has pain, like none of us wake up pain-free, we just deal with it. They set a date to return to work on July 8th. She recommended that we continue with Dr. L and find a local General Practitioner so that we have a hand-on doctor take a swing at this. Besides that, I asked her if she thought that this LLQ pain could be something as stupidly simple as muscle strain, or a pinched nerve, and she said it was definitely possible. Those types of things don’t show up on x-rays or CT scans. She agreed with me that he should be up and moving around – I’ve been saying this to him for weeks, but maybe having her say it would kick his ass into gear a little bit (spoiler alert… it didn’t). I mean… It’s gotta be a muscle thing, right? I am wondering now if he picked up something wrong, or bent over wrong? Did he pull something the last time we had sex? Or a small muscle sprain or tear? What else could it possibly be? I’m so frustrated! 

So at this point, we have a little bit of breathing room. We have additional labs and a 24-hour urine to do, but I don’t think there’s anything to do until July 8th, when he goes back to work, and then nothing until August. I’m hopeful that – once I get him up and moving again – that stretching and walking will help him some, especially if I can get him limbered up before he goes back to work. 

The Saga of the Mysterious Abdominal Pain (Part 1)

Last year, if you recall, Hubby had an appendectomy. They did it laparoscopically, going in from three places: his belly button, his FUPA crease under his belly button, and the left side of his lower abdomen (the appendix is located on the right side of the body). Surgeon told us later that this was an easier way to do it, instead of cutting him open all the way. 

Fast forward to mid-April (after we got back from vacation, actually), when he told me that he’d been having some abdominal pain on the left side for the past few days. He wondered if it was related to his surgery. By April 18, he was in increasing pain, kind of like waves, where I’d see him tense up his whole body to deal with the pain. He’s never been a “go to the doctor” kind of guy, but I was able to talk him in to seeing a virtual doctor, via Doctor on Demand, which is covered by his health insurance. We spoke to Dr. K and after hearing all of his symptoms, she suggested that he might have Diverticulitis – this is when there are little pockets in your intestine that become inflamed or irritated. (Diverticulosis is when you have them, Diverticula are the names for the pocket, and Diverticulitis is when they’re angry). She suggested that he eat a low-fiber, easy-to-digest diet (to give the intestines a chance to heal), and follow up in a week. 

At the April 24th follow-up, he reported that the pain levels were about the same, about a 4-5 on a scale of 10 (seriously?) Because of this, Dr. K suggested that he get some lab work done, as well as a urinalysis (UA), continue the diet, and follow up again in another week. We got the lab work and UA done at a local Walgreens, and the results showed red blood cells and high protein levels (3+) I his urine. Dr. K called us when she got the results and posited that a kidney stone might be the culprit (even though kidney stones usually cause pain in the back). She referred him for a kidney ultrasound, as well as a colonoscopy (because he’s due for his first one, not because of the pain). She also wrote him a prescription for blood pressure meds, because his blood pressure was way too high, hitting Hypertension 1 or 2 levels. The plan was to have him pick up his new meds after work when he went back – he’d been taking a leave of absence at this point, because of the pain and all the doctor stuff. 

He was set to return to work on May 2nd, but he couldn’t sleep overnight (May 1st into May 2nd)… Nothing unusual, this has happened in the past; he would just take an extra day off and get back to normal the next night. Not this time! He was suffering some serious insomnia that I’ve never seen before. We’d watch TV in bed for two hours or so (up until about 10pm, normal bedtime for us), and he’d fall asleep until midnight and then just… be awake the rest of the night until the alarm went off at 6:30am. This went on for a few days (with him missing more and more days of work), with him getting more and more frustrated – which, in turn, made the insomnia worse. We tried Unisom. We tried Tylenol PM. Finally, I had to be “The Bitch” and I took away his soda after 2pm (I mean, come on… he was complaining about his insomnia while drinking Mtn Dew in bed…). I had to gather all of my Inner Peace Hippie language and tell him that things would work out, would be okay, it’s nothing to worry about, blah blah blah (basically “talk him down” and get him out of his head). I made the suggestion that, when the insomnia happens, he should get out of bed, go sit on the couch and read until he felt sleepy again. When he felt sleepy, just let it happen, and just sleep on the couch. This did work, and for a few days, I’d go wake him up to see if he was going to go to work (never did), then lead him back to bed where he’d sleep again until 9:30 or so. Every morning, he was like a zombie. 

During this time of insomnia, on May 4th, his Ultrasound was negative for anything. No stones found. No kidney abnormalities found. There is a possibility that a stone was there and it had passed painlessly. Dr. K suggested that he do a second UA at the end of the month before the next virtual appointment. The following day, I finally had a chance to pick up his blood pressure meds (yes, almost 2 weeks after they were prescribed), and I also picked up some Magnesium Glycinate and Melatonin – I was gonna get that man to stay asleep all night, no matter what it took. No caffeine after 2pm. No candy in bed. No cake or ice cream or brownies. Lots of water. Two Mag and two Melatonin at bedtime. And holy shit, did it WORK! He slept like a freakin’ rock! He was finally able to sleep all through the night, and on May 24th, he returned to work (thank god!)

He had a follow up UA on May 28th, and when the results came back, Dr. K called us to tell us that there was still protein in the urine; she believes that the kidneys are fine, but there’s just a “leak” somewhere. Kidneys aren’t supposed to let the good stuff, like protein, go through; only waste. She recommended a CT Scan of the kidneys, as well as referring him to a Urologist (for the urinary anatomy) and a Nephrologist (for the kidneys). She reiterated that there’s no cause for alarm, but with the kidneys not working right, the cause needed to be found. All referrals were sent as Urgent so that he would be seen quickly. 

Even though I knew I shouldn’t, I (of course) hit up Google to figure out what might be happening. Many results said it was Proteinuria, a sign of Kidney Damage. Then it got a little scarier… It could be an indication of Chronic Kidney Disease, which eventually leads to Kidney Failure which leads to Kidney Transplant or death. But, let’s not think about that… Possible treatment includes easy (yet hard) things like changing diet, weight loss, or (in some cases) dialysis. 

My brain is trying to pin the high blood pressure as the culprit, but at the same time… my brain is running away, indulging in horrid What If scenarios. Months and months of health issues. Sick husband who can’t work. How to pay bills. Having to be the only one who can do anything. And then Wednesday, as I’m doing dishes, out of nowhere, my brain decided to conjure up the idea of him dying, and envisioning how to tell my child that her father was dead, how to tell my mom, notifying not-as-close family and friends, and everything that comes with that. I spiraled deeper into this treacherous fantasy as I scrubbed pots and pans… Does he have life insurance? Would I be able to keep the house? What about all the places we said we’d go some day that he’ll never get to go to? God, it was terrible! I saw the next 50 years of my life, dreams we had, but without him in it… And then… then… My brain said, if he’s gone, why should I even stay in this town? How could I possibly live in this house, that we built our family in for the past 20 years? His memory is in every single square inch of this house. How could I suffer with that for the next 50 years? But then… I could I not stay? Leaving this house would be admitting that he finally was gone, out of my life, and that I was ready to move on without him. 

Have you ever tried to do something while trying not to cry at the same time? Lord, it was a shitty day… Every time I thought I was okay, another thought would cross my mind (He’ll never see the Pacific Ocean or He’ll never get to visit Japan) and I’d have to bite the inside of my cheek to keep my shit together. I was fine in bed while we watched TV, but of course, Lights Out Bedtime Brain does some seriously mean things, and once I was sure he was asleep, I had to go into the bathroom and sob (like ugly, mouth open sob) into a towel, just to get it all out. Like, how do I survive without this man? He is my world. There is no place in my existence that he has not touched. 

This morning (May 30th), I woke up and for a blissful moment there were no problems. He was sleeping. I was sleepy. Everyone’s bodies worked perfectly. Then I stretched and my muscles hurt (as they always do), and it was like snapping back into my body… There is an Ongoing Situation hanging over us, like a grey cloud. It’s not a black cloud, I tell myself today. Kidneys are fine. They’re just a leak. It could be something that can be fixed with a pill or a diet. That’s what I’m tying my hat to today. 

Everything is okay until I hear otherwise.