The Saga of the Chronic Kidney Disease... oh and the Mysterious Abdominal Pain (Part 5 - September 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)

Well, it's the end of another month... 

When we last chatted, Hubby was stuck at home on Leave because Home Office sucks and can't get their paperwork done in a timely fashion (all while demanding that we get our paperwork done in a timely fashion). 

No, I'm not frustrated, what makes you say that?

Anyway, he went back to work on September 7th and was then waylaid with nasty vomiting and gastrointestinal problems again. He was able to do a few more days at work the following week, and then two more days the week after that. 

On September 22nd he woke up with knee pain, leg pain, and a swollen knee, which - of course - led to more time away from work. 

On September 25th, I took the entire day off for a few different doctor's appointments. I had to come back to Woman's Imaging for a left breast ultrasound, and under the advisement of the scheduler, they said that there would be plenty of time for me to get this done and have time to go to the next building for Hubby's GE Consult. Yeah, that didn't happen. They were already running late when we got there, and once I was up on the table there was a lot of Hmmming being done. They were interested in an odd-shaped area near a lymph node. The Tech took a bunch of photos and then called in the Radiologist, who also did a lot of Hmmming, and declared it a regular ol' cyst. I won't lie... I had a few minutes of oh shit, is this really happening? While the Tech went to go get the Radiologist, I'd texted Hubby that I was running late, and that he should go over to his appointment so he didn't miss it. When I was fully dressed and went back to the lobby, he was sitting there waiting for me. As we walked over to the other building, he said that there was no way in hell he was going to leave, because he didn't know if I was going to come out of there with bad news, and he wanted to be by my side. Awww, but still...

Because of the too-long appointment, we were too late for his GE consult, but we were able to reschedule it for later in the day after the appointment with Dr. L. So we went home and I had some time to decompress from the "near-miss" of the morning. 

The visit with Dr. L revealed that hubby's protein and creatinine were both still too high. She changed his diruetic from Chlorthalidone to Spironolactone, which may be better for his kidneys. Even better, though, is that she reached out to a company called Natera and secure a full gene panel test for us for free! These tests are usually around $1000! She's hoping that maybe whatever's causing Hubby's problems are genetic and can be dealt with, because if not, the next step is a Kidney Biopsy, and Hubby absolutely pushed back on the idea of that. I'll have to work on him... we can't just watch his kidneys get worse and worse and not know why. Again, he was told to watch his diet and blood pressure, and return in mid-October after the genetic test and a round of labs. 

Well, there was no time to eat lunch at this point (unless we ate it in the car, and who wants to do that), so we went over to the GE appointment (remember, this is in relation to the Left Lower Quadrant pain, not the Kidney issue). As expected, the doctor has no magical diagnosis for us. Every question she asked was a dead-end. The only suggestion she had was to go do an x-ray to look for any possible bowel blockages, but she surmised that whatever is causing his pain my be due to abdominal wall issues (i.e. muscles, not intestines), and not her body parts to treat. She suggested using capsaicin or lidocaine pain reliever creams, or heating pads to treat the pain when he has a flare up. She seemed to ramble a lot as she spoke, but I think it was because she didn't have any definitive answers for us and she felt bad; we told her it was okay, that we didn't expect her to pull anything out of a hat, and that seemed to get her to stop rambling. We shared with her that he'd already had a coloscopy, as well as an Ultrasound, a CT Scan, and an MRI, and she asked that I send those reports over to her (I did that a few days later). 

Over an extremely late lunch at Culver's, we had a lot to talk over, and I said that it might be time to stop the LLQ wild goose chase and just learn how to deal with it. He hasn't had a pain flare-up in a few weeks, and knock on wood, maybe they're gone... He agreed that he wanted to stop, because he saw how it was affecting me... I worry about him, I worry about money, I have to take time off of work, I'm not taking care of myself, it's all so overwhelming. I said that it's better that we focus our time on taking care of his Chronic Kidney Disease, get that under control, and deal with whatever random pain may come. I made a mental note to pick up some pain cream next time I went to Walmart. 

Oh, and to add to the stress? I got a text message from work telling me that our offices would be closed starting September 26th because of Hurricane Helene, and would also be closed the next day as well. And y'all know me... I hate hurricanes! 

On September 30, we went and did the Natera genetic testing, which was amazingly simple! Just a single tube blood draw, done by an amazingly charismatic nurse. Again, Dr. L swears that this will be free to us, but I'm interested to see if they'll even try to bill our insurance or not... 

So, that's where we are. We may never know what caused - or is causing - this mysterious abdomen pain. But it's too frustrating to keep trying to find a cause. It's time to put all of our attention on him getting healthier and taking care of his kidneys. Here's hoping Hurricane Helene leaves us alone, too!

The Saga of the Mysterious Abdominal Pain Never Ends (Part 4 - August 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)

We're still in a holding pattern, of sorts, and it's really starting to get to me, guys. Every day, I wake up thinking Today is going to be a good day... we're going to do everything we're supposed to do, we're gonna stay on our schedule, and nothing is going to be weird or abnormal. And then something happens and the schedule goes out the window. I'm a creature of habit. I like knowing that on Monday, I'm going to take him to work, go to the gym, come home and shower, work from home, pick him up, make dinner, go to bed. But if he doesn't go to work, we sleep in, so I don't go to the gym, so I don't get my shower, and then I shower before I go to bed. Part of it is me, I know that... I know that I can still get out of bed and go to the gym, but I have no willpower; the minute that something different happens, I use it as an excuse to not do things. I hate this about me, and I complain about it a lot, but I never get around to actually fixing this problem.... 

Sigh...

So, on August 1st he expected to wake up and go to work, but when he stood up out of bed, he said that he felt extremely dizzy and lightheaded. This carried over for the next few days as well. He was feeling better and went back to work on August 8th and did a full week with no issues. 

He had another round of labs on August 12th, and we were ready for his MRE on August 14th, but it got cancelled because Blue Cross Blue Shield hadn't approved it yet. We also had a follow up with Dr. L who said that he was stable and that he should keep on tracking his blood pressure and watch what he eats. 

On August 15th, he had his Peeper View (Cystoscopy) and a prostate exam. Bless his heart, the Urologist wasn't all that... gentle... with the exam! I left the room and hung out in the hallway, and within seconds I heard a weird combo of "oof!" and "oh!" and then the doc was out of the room and I went back in, trying not to giggle. Hubby had never experienced a digital exam before, so he was grossed out with the lube and the finger and the whole thing and me - a vagina haver - was like, what's the big deal?

Anyway, the nurse came back and to clean and prep his peeper, then the doctor squeezed some numbing gel into hubby's urethra. At the same time, the nurse uncovered the Cystoscope, and my god... Hubby's eyes about popped out of his head! He said later that it looked like an immersion blender. 

This looks like a creepy mechanical iguana, lol

The cystoscope has a little light and camera at the end, and it's connected to a TV so that the doctor can see what's happening, and I got to see the entire thing. I won't lie, it was cool as hell! Hubs wasn't as impressed, and he was uncomfortable, and let out a few sharp oofs at one point. We saw a (benign) polyp in his urethra, and the entire bladder. They used the cystoscope to inflate the bladder with water to stretch it and make reviewing the tissue easier. I didn't time it, but I'd say that the entire process from numbing to retraction was maybe 5 minutes? Once done, they left him to clean up and empty his bladder in the bathroom nearby. 

As expected (and I'm so frustrated by all of this), he didn't see anything. Maybe a redness that could be a result of a past infection or problem. He wrote an order for a FISH Test (Fluorescence in situ Hybridization) which is a test that can detect genetic abnormalities associated with cancer. FISH testing may be more reliable for looking for abnormal cells, and may detect bladder cancer up to 6 months earlier than other methods. Interestingly, on the lab order, they have Hubby diagnoses as Chronic Kidney Disease Level 2 - not even Dr. L has given us any official diagnosis. 

As he feared, but fully expected, he woke up the next day with LLQ pain again. Most likely all of the ab-clenching and tensing up during the Peeper View triggered another bout of pain and he missed an entire week of work. 

On August 22, he felt ready to go back to work, but he was waylaid by gastrointestinal issues (like three poop stops in an hour type of issue) that stuck around for multiple days. He stayed home again, and because he had to fill out some official paperwork with Home Office that took absolutely forever (!), he didn't go back to work until after Labor Day! 

On August 27, we had a full schedule. First up was an MRE (Magnetic Resonance Enterography), a special type of MRI that uses contrast material to produce detailed images of the small intestine. It's often used to evaluate for things like Crohn's Disease. When we got to the medical plaza, we were called back and he was given four containers of VoLumen (20oz each, I think) that he was supposed to drink within an hour! While I was paying attention to the nurse and what he was saying, I could see Hubby next to me mentally withdrawing and already shutting down inside of his head... I can't drink that, there's no way, I quit, let's go home... those kinds of thoughts. I asked the nurse what would happen if he didn't drink enough, and was told, point-blank, that the MRE would be cancelled, we'd need to reschedule, and he'd have to drink again. So, I made Hubby put on his Big Boy Pants and drink. 

It tasted like flat room-temperature Sprite, which was weird. He got through the first bottle in 20 minutes, and most of the second bottle in the next 30 minutes. (If you can math, that means he's way behind schedule, and things aren't looking all that good). The nurse called us back again so that he could change in to scrubs. He said that Hubby needed to at least drink three bottles or it was a no-go. So Hubby continued to chug while he changed. The nurse also asked if I wanted to be in the room with him while he had the MRE (I didn't think that was an option), so I needed to put on scrubs too. Both of us had to be 100% naked under the gowns (plus those fun grippy socks), with no jewelry, hair clips, glasses, etc. The rest of our stuff got shoved into a locking drawer and the nurse held on to the key. By the time he got to the MRE machine, he was full of 2 3/4 bottles of VoLumen (much less than he should be, but he got the go-ahead from the nurse, so...)

Inside the MRI suite, he went in feet first with his hands above his head sticking out of the machine. They gave him a button to push in case he needed to tap out, and both of us got earplugs because the machine is very loud (especially inside the machine). Some machines allows for music inside, but this one didn't have that feature, so he was just in a Pringles can with his own thoughts. I was able to stand next to the machine and hold his hands, and at first, I was just giving him some gentle "I'm here for you" squeezes. For many of the scans, he was required to hold his breath for anywhere from 8-19 seconds, so we worked out a system that I'd squeeze at the halfway mark (4-9 seconds) and double-squeeze when it was over. This seemed to calm him down well, and after about a half-hour, he was done with all the scans. We changed back into our real clothes and headed home. He was still full of VoLumen, so he didn't really want lunch. 

After lunch, we had our last follow-up with Dr. K (the virtual doc); she felt like Hubby was in good hands with Dr. L and ARNP LeBlanc, and asked that we just check in with her every once in a while to let her know how he's doing, especially if (when) we get a true diagnosis and a reason for the diagnosis. But until then, we were done with her; no follow-up appointments in the future. 

We had a few hours to relax but then we had to go out again, this time for his Wellness visit with ARNP LeBlanc. This was more of a routine doctor's visit, not specifically for his pain or kidneys. She suggested that Hubby have his lipids checked for high cholesterol, but other than that, she was fine with what Dr. L was doing, and sent us home with no additional info or follow-up appointments. 

So at this point, he's still on leave, but that's because Home Office sucks, not because he's not feeling well. Here's hoping that he can get back to work soon and we can put all this pain and poop and dizziness behind us and get back to real life. 

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.