On the Mountain of Healthiness, We're *HERE* - CKD Update February 2025

After rescheduling his January appointment, we met with Dr. L today. On our way there, as we were parking in the parking garage, I told him that if he wanted to quit and never have a biopsy, and never see Dr. L again, I would accept that decision. His October visit was very stressful, and he seemed just so... DONE... with everything. Personally, if it were me, I'd keep going until I could figure out what was wrong and how I could fix it. But he's not like that. He gets frustrated and overwhelmed and just flips a table and walks away. So, I put the ball in his court and said, if you quit, I stand behind you. 

Speaking to Dr. L, he had to admit that we've done pretty much nothing healthy over the holidays... Between Thanksgiving and New Year's, life just sucked. Clover got sick and passed away, and we just said fuck it and didn't give a shit about anything. We ate a lot of junk food, a lot of fast food for dinner, a lot of prepared food (like chicken nuggets or frozen pizza) for dinner... Neither of us could be bothered to do anything good for us! He stopped taking his meds and doing blood pressure checks. Thankfully, we got our shit together again after New Year's, which is why we rescheduled his appointment. 

She reviewed his numbers, which seemed to be wavering slightly, but not decreasing too much; his eGFR is up to 69 (nice) and most other numbers are holding. His blood pressure, of course, was much worse than it had been, but that's because he stopped taking his meds. His A1C is just a tiny bit higher than she'd like (normal is 5.6% and he's at 5.9%), so we need to keep an eye on that in future visits now, too. She stressed again the importance of staying hydrated, eating right, and exercising. I told her that we were doing better in that regard, though we weren't where she wanted us to be. I gave her a visual of a tall mountain and a low valley; she was down in the valley, demanding we come down to be healthy with her, and we were up near the top of the mountain, where it was super-unhealthy and full of Bad Things. We were slowly coming down to meet her, but still far away. We explained that there was progress being made, but because we were so high up on the mountain, it would take us a while to get down to her level. She seemed content with that, because she understood that there was forward motion, no matter how slow. 

We told her about the gastro issues and the chest pain; she suggested that the chest pain may actually be Costochondritis, inflammation in the costosternal cartilage that connects the ribs to the sternum. It most commonly affects the upper ribs on the left-hand side of the body, and pain is often worst where the rib cartilage attaches to the sternum, but can also occur where the cartilage attaches to the rib. It's also known as Chest Wall Pain Syndrome or Costosternal Condrodynia. The cause of Costochondritis is unclear... Treatment focuses on easing the pain while waiting for the condition to ease on its own, which may take several weeks. Symptoms include sharp, aching, or pressure-like pain, pain that may radiate to the arm or shoulder, and pain that worsens when taking a deep breath, coughing, sneezing, laughing, or any other chest wall movement. Interestingly, Costochondritis occurs most often in women over 40, so I wonder if this is something that I'll have to deal with at some point? 

Because of the inflammation, she wondered again about an autoimmune disease - something she's never been able to rule out for him. He had an abnormal antibody test back in June, which hints at an Autoimmune disease, but doesn't point to anything specific, unfortunately (it's not HIV or AIDS, we tested for that). For now, she'll take another wait and see approach while he works on getting his blood pressure back under control (it was 143/89 at this visit). 

She brought up the subject of a kidney biopsy again, but surprisingly, Hubby didn't automatically shut down. He wasn't happy to talk about it, but he seemed a little more open to the idea? She didn't push it though, because she won't do it until his blood pressure is back to normal (which would be around 120/80). To that end, she upped one of his blood pressure meds, reminded him to do blood pressure checks routinely, then asked us to come back in April. I looked over at him, thinking that this would be the time for him to shut it down or keep it going, and he chose to keep it going. So we'll be back to see her at the end of April for a follow-up. Here's hoping that his blood pressure is back down and his eGFR is back up!

The Kidney Disease is Chronic, but This Snark is Iconic

Hi there! If you're new here, my husband has Chronic Kidney Disease, and we're both learning how to deal with this weird avalanche of related and unrelated crap that goes along with it. If you've missed any part of this adventure, you can catch up here:

• April & May  
• June
• Baby's First Coloscopy
• July
• August
• September
• October

When I last checked in, his eGFR was around the mid-60s, and he was adamantly refusing a kidney biopsy. We made a deal with Dr. L to just maintain for the next few months and come back in January to check his numbers. I was mad at him, and heartbroken that he wasn't seeming to take this seriously, and I just kind of mentally shut down. 

All caught up? Okay, let's go. 

Throughout the end of October and into November, he was having the opposite problem of his previous insomnia... he was sleeping far too deeply. I could shake him, slap him, tickle him, turn on the lights, and he just wouldn't wake up. I'd start trying to wake him up for work at 6:20 like I normally did, eventually backing up to 6:15, then 6:10 until Sunday, November 3rd, when I was literally shaking him back and forth, without him waking up. He'd finally wake up around 6:50 and hobble in to pee; of course by then it was too late for him to get to work. 

Also, there were multiple times where he fell asleep on the toilet, being in there for 20-30 minutes until I realized he was still in there and I had to check on him. At first, it was a little funny, but then it got really worrisome. Because of this, he'd either get to work late (and have to use Leave to cover the missed time), or just not go in at all. Things got back to "normal" around Veteran's Day just to suck again, when our cat got sick and eventually passed away mid-December. That really threw a wrench into the time between Thanksgiving and New Year's and both of us just let ourselves do whatever the hell we wanted... Lots of fast food for dinners, lots of junk food, no gym or parkrun, skipping blood pressure checks, not taking meds; really just a few weeks of Fuck It behavior. 

He was supposed to follow up with Dr. L on January 7th, but because of this Fuck It behavior, we requested to reschedule to February so that we could get back on the wagon, so to speak. Dr. L didn't seem too happy about that, but was able to find an appointment for us.  

At the beginning of the year, he had some unplanned time off (hours getting cut for many employees), which worked in his favor a bit, since he'd wanted to take some personal time off anyway. Unfortunately, he was battling bouts insomnia and heavy sleeping again! I can't wake him up, it's frustrating as hell, it's scary, and it's just making me mad. Near the end of the month, he had a scare, with unknown chest pain that he thought might be a heart attack (it wasn't, thank goodness). Because he'd taken a number of days off (he was back on the work schedule at this point), he had to put in for another Leave of Absence, which meant that he had to wait for it to be approved before he could go back to work, even though he was fine and okay to work (this procedure is so stupid). So, whether he really wanted it or not, he got more time off, and I got more stress, having to figure out how to pay bills and keep the household afloat with no paycheck coming in for weeks and weeks and weeks. 

In the beginning of February, he had another bout of... gastrointestinal issues (we all know what that means, right?) I had picked up a Publix cake and made tacos for dinner on February 8th to (belatedly) celebrate my 18th year quit, and both of us suffered from "hot snakes and bubble guts" all night. 

This came again and again for him over the next 5-6 days, with his troubles being worse than mine. We still hadn't gotten any paperwork for his LoA, which sucks! Last time we did this, the paperwork showed up almost immediately, so where the hell is it now? 

Mid-February, he said to hell with it all and planned to go back to work; if they kicked him out, they kicked him out, but maybe it would prompt HR or Sedgwick to do something, right? But then the morning of the day he wanted to go back, another week with upset stomach! Mostly he'd be fine all day long, sleep fine, wake up fine, get ready for work, but then get stuck in the bathroom for 45 minutes - which would make him late for work (and since he was already on such thin ice with the stupid LoA problem, it didn't make sense to go in to work), so he'd stay home again. 

February was just this never-ending rollercoaster of shit and sadness. At one point, I wondered if the gastro issues were due to Publix cake. He had issues (including nausea & vomiting) back in September, right around my birthday, and of course, I get Publix cake for my birthday in September... I hope it's not, because I love it, but not having the poops is a lot more important than having cake! 

On February 21, we met again with Dr. L, who seemed, I don't know, content, with Hubby's progress. She stressed again about eating right and exercising and drinking water. We shared with her the information about his gastro issues and the chest pain; she said that the pain was most likely Costochondritis,  inflammation where the ribs meet the sternum. And that inflammation could be a sign of an autoimmune disease, something that she has yet to rule out for him, since he does show some positive test results for unknown autoimmune diseases. She again brought up the kidney biopsy, and while he kind of side-stepped the entire issue, he didn't shut her down. But she wants his blood pressure to get down (and stay down) in the normal 120/80 range, so she didn't push him on the biopsy. She upped one of his blood pressure meds and told us to come back in April. 

We went down to Tampa for Gasparilla and when we came back, he was ready to head back to work; he still hadn't gotten anything from Sedgwick (well, a confirmation email back in January, but that's it), and he was tired of waiting. And, unfortunately, that's when shit hit the fan...

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 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. 

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.