Tag: PKD

Living With… Stuff: 08 May 26

As some of you may know or remember, I have polycystic kidney disease to which there is no cure and remedies to reduce the cysts themselves can be fruitless since, I’ve been told, they’d just come back. When asked what, if anything, I could do to better my eGFR and creatinine numbers, my nephrologist echoes something my PCP said:

Drink more water.

It’s not exactly “yuck” but water is boring. It has no taste. It tastes terrible when it’s warm and did I mention how tasteless it is? So when trying to take this very good and reasonable medical advice in hand, I wound up spending quite a bit of money overall buying big bottles of “enhanced” waters and while I found Core to be to my liking, the more I bought from Amazon, the more expensive it was getting and it was too rich for my blood so it was back to filling up my two water bottles with Brita-filtered water and I was doing great for a while before water got boring again.

Or I’d drink so much water that when I stood up to go to the bathroom, I could feel it sloshing around in my stomach – that doesn’t feel good and there have been times when I’ve drank too much water and have thrown it up again. So the onus was on me to drink more water but to not drink too much water which was the easier of the two things because water is boring. Except when used to make a nice cup of coffee.

My lady’s son and daughter-in-law gave her a Cirkul mug that has a straw built in and holds 40 ounces of water. Now, I had seen ads for Cirkul and I barely recalled looking into this and other flavored water things and all of them have stuff like sorbitol and other sweet but not sugary things and I’ll admit to being a bit jealous of my lady’s new mug and more so when that woman drinks water like it’s going to be declared illegal any moment now – and has no shame in reminding me (and my doctors) that she drinks water like a fish.

So I went on Amazon to look for the mug that she got and willing to take a chance with Cirkul’s zero sugar concoctions, knowing that (a) if it’s not real sugar, it leaves a nasty aftertaste in my mouth (b) it can upset my stomach and (c) upset the water balance in my stomach and have me looking for my bottle of Imodium. Why? Because I really, really needed to drink more water, not just for the sake of my kidneys but also to do something about this persistent dry mouth that radiation treatments stuck me with. I’m two years past my last treatments and my mouth usually feels like I’ve been eating sand, my sense of taste is screwed up – again – and it can’t make up its mind whether I can taste sweet or I can taste salty but not even close to how I could before radiation treatments.

I couldn’t find her mug and, honestly, I probably could have had I been patient enough, but I found Cirkul’s Titanium bottle instead and it came with a six pack of flavors at a nice price and, again, I’m willing to try anything to keep my kidneys stable. I love my Cirkul bottle. Some of the flavors, eh, I’m not all that crazy about and more so when I can only taste them for a moment and then nothing. When mine arrived my lady correctly said that I only got one because she has one and I said, “Yeah, you’re right…” I had put the Honeycrisp Apple flavor cartridge in and, hmm, this doesn’t taste all that bad although my sugar-trained tongue let me know that, okay, it’s kinda sweet but it’s not sugar and you know what that’s gonna mean and to that end, um, shit, I wish I had been disappointed but I wasn’t but, once again, I was committed to this.

My bottle is 32 ounces and I manage to suck it dry at least twice a day (and if your mind is in the gutter, so was mine). I’ve… kinda gotten used to the zero-sugar thing and these days, nothing irks me more than to pick up my bottle, bring it to my lips, suck on the “nipple” and… damn it, I’m out of water. Again. And I need ice. The Titanium bottle keeps the water cold for quite a bit of time; I’ve gone to bed with some ice cubes still in the bottle and have wakened up, grabbed the bottle to head for the kitchen, and there’s still ice in there.

Fucking cool. Just way fucking cool. I am having a ball drinking water and when I’ve gone through all the flavor the insert has to offer, well, I can pop in another one – but the water is still nice and cold and… not so boring. Now, here’s the lie I told myself. I had said that I was going to give this Cirkul thing a try and when I run out of flavorings, I’m probably not going to buy any more. I had sucked my last tube dry of deliciousness (yeah, another double entendre), said that my test was successful and I had been drinking a lot more water but, nah, not buying anymore cartridges and I was even saying that when I went on Amazon to order twelve more of which six of them are “Frosted Refreshers.” Hmm, okay, they don’t cost a whole lot so I got six of the ones that came with my Cirkul initially and six of the Frosted Refreshers and they arrived just in time as I had just sucked the last drop out and, yeah, I’m having fun with this.

I want to try the Frosted Refreshes so I grabbed the first one on my right that had “Pink” in the name of the flavor and, why, Jesus? Why did I pick that one? Even better, when I saw “Pink” I knew I was going to be in for what I’ll politely call an interesting taste, but nothing ventured, nothing gained. I screw in the cartridge (heh, heh), set the flavor dial to ‘3’, and take a nice, long pull on the nipple and… holy shit. You ever taste pink? I did. I have never been so… encouraged not taste pink again. But this is a brand-new cartridge and there’s another one in the box which, yeah, you guessed it, will be saved for last.

I bore up under the taste of pink and, no, definitely not the pink I’m used to tasting and you do catch my drift. I was so happy to discover that I’d sucked all of the flavor out so I could put in a new cartridge. “Paradise” is the new flavor and it’s not bad but, then again, plain old water would’ve been better than “Pink.”

The bottom line is that I’m drinking a lot more water. My doctors will, hopefully, be happy. My lady? Eh, she’s kinda proud of me but probably won’t be totally happy with me until I can drink more water than she does and I plead no contest, Your Honor.

Living With… Stuff: 24 February 26

I’d been recording my weight and blood pressure for well over a month in a text file and thinking about my appointment with my nephrologist in April, I wanted to know if the practice had an email address that I could send the file to prior to my visit so I didn’t have to print out a ton of paper, carry it to my visit, only to have to toss it.

The practice called me yesterday morning (they were lucky that I was up) to tell me that they didn’t have an email address for this purpose so… the girl I was talking to wanted me to read the contents of the text file to her over the phone.

I can’t even tell you how long it took to read it all to her. As far as my weight was concerned, I was reading that and stating whether I was naked, undressed, dressed, or fully dressed (as in I gotta go outside dressed) as well as my blood pressure taken without my morning medications and then 2.5 hours later and after taking my medication.

I get finished reading it all to her and I guess she said something to my doctor who may have been wandering by at the time, but she comes back to me and says that if my top number for blood pressure is 150 or higher or lower than 110, I should call them. Otherwise, I don’t have to record my weight and blood pressure any longer although she did say that she understood that some of my weights were dressed but, eh, nothing to really worry about.

I get up this morning and start my routine. Hit the bathroom and take care of the bladder issue. Pet the dog; get him some fresh water, check to see if he, ah, used his pee pads; clean my mouth and… I’m supposed to be doing something else but I’m looking in the mirror, and the 70-year-old guy needs to shave and that’s an indication that I need to change the blade, but I won’t do that until I get the new blades I ordered.

As I’m applying the sensationally scented Cremo “Bourbon and Oak” cream – man, I could smell this all day, every day – I think, oh, yeah, that’s right – I was taking my weight and BP after cleaning my mouth but I don’t have to do this, well, I was told to keep taking my BP but don’t write it down and my lady and I agreed that taking it every other day or so would be okay but it removed a part of my morning routine that, again, I’d been doing for well over a month.

I’m done in the bathroom; I hit the kitchen and wash the few dishes in the sink; check to make sure I put the paper filter in the reusable filter I use for coffee. Pet the dog. Put my onesie on. Pet the dog again and… I’m forgetting something… oh, no, nope, don’t have to do that anymore. Sheesh, this is going to take a moment to remove from the morning routine. I sneak into the bedroom so as to not wake my lady up, make up my side of the bed, put my slippers on, grab my phone and Samsung tablet, check to see if my watch is done charging – it isn’t – and pop my morning meds into my mouth before sneaking out of the room to swallow my meds with huge gulps of water, make some coffee, then come do… what I’m doing now while looking at my blood pressure machine sitting on my desk and unused for the first time in over a month.

I have the sobering thought to have learned that my late mother’s husband died… on 29 December 25 and because no one could get into his phone, my step sister couldn’t call me to tell me and it was because we hadn’t heard from him or could call him that I called her and learned that he had died… and I suspect it was due to kidney failure although she didn’t really say what the cause of his death was.

It just gives me some shit to think about. I don’t argue the point that keeping my blood pressure under control is important to the stability of my kidneys but even after all this time – and all the other shit I’ve been through – this PKD shit continues to irk me. Like, for example, I had put on a fresh T-shirt the other day and I realized that it’s one of my old medium shirts because it’s crawling up my stomach and makes me look like I’m wearing a sports bra. My lady thought this was funny, but I didn’t as I looked in my T-shirt drawer for one of the XL shirts I’d gotten back before I went to Mexico.

Sometimes, when I’m standing up, I realized that I’m holding my back like I’m pregnant and my abdomen sure the fuck looks like I am. I can laugh about it because there’s nothing I can do about it unless I happened to get a new pair of kidneys – and I don’t see that one happening. Or I’m sitting down and resting my hands on my belly – and especially if I have my bib overalls on; I just slide my hands in there and rest them on my belly and it works to warm my hands up, too.

All I can do is take my meds, drink as much water as I can stand to, grin and bear this condition and with the hope that it doesn’t become the death of me…

Living With… Stuff: 21 February 26

Here’s something that I only realized yesterday when, in accordance with my nephrologist’s instructions to log my weight and blood pressure, I noticed that I’m gaining weight. Now, you might be thinking, “So?” but I’m about to tell you why this is significant… and something that I knew about.

When I’d had my stroke (twenty years ago next month), my neurologist put me on transdermal fentanyl patches to deal with the horrible pain of the neuropathy that had landed on me and, despite what he had told me about this, it had decided it wasn’t going away.

The .75mcg dose I had worked up to did too good of a job of dealing with my pain, i.e., I would be so fucking stoned that I didn’t know I was in pain but, at the same time, it would leave me almost completely unable to function. I’d change the patch and, whew, man, I would be so stoned that I would just… fall asleep right in the middle of a conversation and I won’t get too much into how…, uh, how horny it made me and because of delayed ejaculation, um, I could fuck for hours before cumming.

Let’s step back from the gutter, shall we? Fine! It came to pass that my insurance company decided that it was no longer going to pay for the patches; I’d gone to refill the script and found that the price had gone up to $390 and that’s how I found out that the insurance company pretty much bailed on me. My neurologist, upon being told about this, put me on gabapentin and I was taking large doses of it and… it wasn’t doing a damned thing for the pain I was in so after being on the gabapentin long enough to be sure it wasn’t any better than taking Tylenol or plain old aspirin, he put me on Lyrica and the best it could do was to take the edge off of the pain – but I could function.

Bear with me because this will make sense. One of the side effects of Lyrica is… weigh gain. Once I started taking the Lyrica, I went from weighing 175 pounds to as much as 220 pounds and I think I’d gotten up to 230 at one point before, I guessed, my body got around to adjusting to the drug and my weight had settle in around 210.

What I realized yesterday is that I… suspected that I had cancer before I was diagnosed with it and the huge tumor appeared in my neck. What tipped me off? I was losing weight and despite still being on Lyrica. It wasn’t all at once and, as my memory serves me, it was a gradual loss until I was weighing in at around 180. I suspected that something could be wrong, but I was feeling good and trips to the lab and the doctor didn’t reveal anything other than me still being a bit overweight for a guy my height and age. But then came the diagnosis of cancer sometime later and, I realized, I never put two and two together which, in a way, made sense given that I had to start treatment for it and… the shit had hit the fan.

I think, after shitting hitting fans and the longest stay in a hospital I’d ever had – and along with chemo whacking my immune system (but I hadn’t started radiation yet), my weight was, at the lowest, 169 and once radiation treatment started, my radiation oncologist told my lady to feed me good food with lots of protein so that I could start regaining weight.

I was still being feed through my feeding tube; from there, I was able to eat some foods, but my throat was all fucked up so I was drinking Ensure and Boost and in some interesting flavors. My hematologist/oncologist told us that because my immune system had gotten wiped out during chemo, it was going to take some time before it returned to normal and, indeed, going to the labs – LabCorp and the cancer center’s lab – was slowly showing that my immune system was getting back into normal values. My palliative doctor upped my dosage of Lyrica to 150mg twice a day but while my weight was slowly going up, it was still far below what I was weighing before all of this came to be.

I wrote some time ago that I had noticed – all late and wrong – that when my facial hair grew back in, there wasn’t a grey hair to be found and the thing that made me realize this – all late and wrong – was seeing a selfie I took when I was in the DR for my birthday and my chin hair was grey… except, now, it wasn’t but as I had written, the grey was slowly creeping back in.

I took this as a sign that my immune system was doing better but then came the insanity with my blood pressure and the task of getting it back under better control and that’s when my nephrologist not only upped the dosage of the amlodipine I was taking, he instructed me to log my weight and BP every day until my next appointment with him in April.

I got on the scale this morning wearing only a T-shirt, underwear, my compression socks, and my glasses and I weighed… 194.2 pounds. Indeed, over the last week or so, my undressed weight has been increasing but I think that because I was “too close” to what I was doing, I hadn’t really noticed this… until yesterday and even then, it was deep into the evening before this whole thing had dawned on me. I’m not even sure what made me think about my weight before being diagnosed with cancer, but it hit me and made me say to myself, “Fuck… I knew this and didn’t pay it any attention…”

I really felt like kicking my own ass about not giving my weight loss the attention I probably should have given it but that would really be like closing the barn door after all of the animals have escaped; it would be pointless to berate myself for this lack of attention given that the events that would take place… took place. It all happened and is now over and done with and… I’m creeping back to weighing in the 200s and thanks to the Lyrica I’m taking… and this just might be what’s fucking with my blood pressure, but I’ll let my nephrologist work on this and see what he wants to do after reading my log.

I also thought that I’d better write this… omission down before I fuck around and forget it. The thing is that the weight gain is actually good news; it means that there’s no cancer “interrupting” how Lyrica affects me as far as gaining weight goes and that my immune system is continuing to improve.

We’ll see how this turns out…

Living With… Stuff: The End of 2025

My thoughts began with this one: My brother has been dead and buried for over forty years. My father, older sister, and mother are dead and buried. What an odd thought when thinking about the end of 2025 except to mention that, true enough, I’ve been living with stuff that wants to keep hanging around.

And being grateful to be here to bitch and complain about it, too. The doctor appointments with my cancer team have been moved out to six months; my PCP wants to see me again in three months (if memory serves me… and it might not) and I know that I have my last appointment with the organization my health insurer hooked me up with regarding my kidneys – and I’m wondering if they’re going to assign a new organization for 2026 or not.

Doctor appointments to get a CAT scan to check on my twice-repaired abdominal aortic aneurysm (AAA) followed by seeing my vascular surgeon who’ll look at the scan report, tell me about the twin endografts inside of me and the state of the aneurysm body itself – did it shrink, stay the same, hopefully didn’t get bigger? I’ll spend maybe five minutes with him and… see ya in six months.

Then my nephrologist. It’s like the older I’ve gotten, the more doctors I’ve been collecting. He’ll look at my lab results, will likely say that I’m still stable, poke the shit out of me for a few moments and… see ya in six months. Then I think I rotate back to my PCP.

Whew. When I think, “Where did the year go?” I can say that I’ve spent a lot of it… at doctors’ appointments and the majority of them with my cancer team – they’re happy that there’s no sign of the cancer I had even though I don’t know the results of the special DNA test they did that is specifically designed to look for HPV-related cancers. Speaking of that test, the company performing the test had sent me a bill for a copay and when I saw how much it costs to perform this test, well, shit – it’s $1,715! As I seem to remember my routine lab work costs more than that.

My oncologist/hematologist said that it’ll take a while to do the test and get results but that’s been a while ago now and maybe I should check the portal to see if, in fact, the results are in. Then again, if my doctor got the results and she had an “Oh, shit!” moment upon seeing them, I would have found out about it because she’d want me back in the office to, I dunno, revise my treatment/post-treatment plan.

I almost have enough medications to start a small pharmacy. That doesn’t even count the bottles of pills in my bottom drawer from where I’ve had medication change mid-stream, discontinued, different dosages and… I gotta do something about them if I’m not going to be taking them… but who knows when I might have to? So, they’re in the bottom drawer of my dresser for now and I’d pretty much forgotten about them until I was looking for the shirt to my black thermal underwear.

Sigh. My doctors say that considering all I went through I’m doing just fine and dandy. My sense of taste is still messed up, the dry mouth is a constant that nothing seems to help a whole lot except for hot coffee; and I have no idea why it helps – but rinsing my mouth with warm water does nothing other than to dry my mouth out. I’ve read that I should sip on water to help with this but, nope, I can guzzle water until I slosh and my mouth feels like I have one of those dessicant pack in my mouth, you know, those little packs used to keep moisture away?

The neuropathy, fuck. I kind of saddens me to think that the chemo-induced neuropathy isn’t going to go away and still totally fucked up that it has settled in my toes. Like this shit knows to head for the lowest part of the body. I have a new palliative doctor, and he seems to be okay so far; we got to talking about the neuropathy and we’ve agreed that I should give Cymbalta a try since there are certain antidepressants that were cleared for use re neuropathy/fibromyalgia.

I told him that I didn’t think this was going to make a difference but, okay, I’ll give it a shot and let him know how it’s working… or if it’s working at all. I wear compression socks every cotton-picking day and they kinda make my feet and toes feel better… until I take them off. There are some days when I wish I could safely sleep in them.

Putting them on and taking them off is some pretty good exercise. My lady tends to laugh as I grunt and groan messing with them and especially trying to get them off. I have to admit that, yeah, me and the compression socks are pretty funny. I have some c-socks I got courtesy of my health insurance – they give me an “allowance” that I can use to get… stuff and one of the things I got quite a few of are compression socks in black and white. My other compression socks are… pretty to look at and I need to get more of them.

Those c-socks are like, holy shit – talk about compression? It takes me almost five minutes to put them on – and no amount of washing has diminished the compression and like I’m seeing with my other socks. They put the squeeze on my feet and from my knees down, they feel nice and I hate taking them off because it might take me ten minutes to take them off.

I get quite the workout fucking with compression socks. I would suppose that going into 2026, I’m in rather decent shape (all things considered). Here’s wishing all of you a happy and prosperous 2026!

Living With… Stuff: 13 February 25

I saw my nephrologist earlier this month and he’s happy with the stability of my kidneys and we agreed to my next visit to be six months down the road. Having to live with this near-constant lower back pain can be a bitch but it’s nothing compared to the neuropathy in my feet that can go from annoying to “what the fuck” in seconds and for no apparent reason.

I went for my yearly CT scan of my repaired abdominal aorta, and I’ll see my favorite vascular surgeon tomorrow (as of this writing) and we’ll talk about what the scan revealed and what’s next down the road, which will most likely be “see ya next year!”

Then I’ll be doing double duty because I have two appointments on the same day with my ENT and radiation oncology nurse practitioner so that’ll be fun (no, it won’t) but I suspect and anticipate two more choruses of “see you in six months” which, on the surface, is a good thing because there’s nothing going on with me to make them go, “Oh, shit…”

So, I’m good although I caught myself rubbing the right side of my neck that there’s still no hair growing back to fullness on that side of my face, which is kinda funny but not really; my lady noticed – and as I had – that my eyebrows haven’t really grown back in and going through the “lingering aftereffects” of radiation treatment is something to laugh about because it makes no sense to be all ill and worried about it. It’s just one of those things that when I look in the mirror every morning, I can’t unsee the fact that there are places where I had hair that I don’t have it for now or maybe it’ll never come back.

It hasn’t been a year since I rang the bells signaling the end of my chemo and radiation treatments (but that anniversary date is coming up soon) and, man, your life becomes a non-stop series of doctor appointments and to the extent that if you don’t write them down – or make sure they’re being entered into the calendar on your phone – yeah, that can get interesting and maybe not in a good way. I was in the process of coming fully awake and I was thinking about having to go to radiation every day and how, at first, I was really leery about having to be irradiated to having a “let’s get this the fuck over with” attitude; I sit up at right at eye level on the shelf on my side of the bed is… The Mask.

Yeah, I kept it and, normally, I see it every day and don’t pay it any attention but since I woke up thinking about it, yeah, it got my attention, and I felt a sense of… weariness that I remember feeling having to drag myself out of bed to go get treated – but my bladder chose to remind me that I have more important things to think about other than something that’s a year in the past and, of course, my bladder was right.

I got on my scale and saw that I gained two pounds from somewhere which, on the surface, is a good thing considering that I was below 170 after all I’d been through. However, it gives me pause because of… Lyrica. One of the side effects of this drug is that it can make you gain weight, and I can remember weighing 175 when I started taking it and, in short order, I gained 30 pounds and there were moments when my weight ballooned to 220 and I was… fat without looking like I’m fat.

I get cancer and my weight dropped and “all that I’d been through” didn’t help things but what’s concerning me is that I’m taking twice the Lyrica I was originally taking and… I don’t weigh 200+. No mistakes – my weight has been consistent +/- a couple of pounds either way and I’m wondering if Lyrica’s weight-gaining side effect has been put on hold due to the lingering effects of chemo and/or radiation. All of the doctors are happy with my weight and considering, well, yeah, you know that part. And I sure as fuck really don’t want to go back to weighing 200+ because it’s uncomfortable, my clothes don’t really fit right, I don’t recommend it.

I keep “reminding” myself to mention this to my oncologist and haven’t yet… and I might not question it unless my weight starts to fall off and because that probably won’t be a good thing. Just some of the shit that goes through my mind on a daily basis, and I get reminded of because if you’ve never had both of your feet hurting, don’t. Just don’t. I know it doesn’t do any good to still be bitching about something I know isn’t likely to go away and leave me alone – and my med team reminds me that there’s nothing to be done about it anyway, so it becomes necessary to keep my mind from falling into the trap of “The Dark Place” by…

…playing Power Wash Simulator on both Meta VR and Xbox. I “discovered” Fruit Ninja on Meta VR and I’ll have to write about those adventures a bit later on. So, overall, I feel like I’m doing okay and, yeah, jeez, all things considered.

Living With PKD: 05 July 23

I just got off the phone with the kidney nurse my insurance carrier provides and assigned to me regarding my kidneys. I appreciate this service but it just bugs me that (1) I never seem to have the same nurse and (2) because of that, I wind up reinventing the wheel with a new nurse…

And having to suffer through her telling me stuff I already know and that I’m very damned aware of. This one seemed to be shocked that I won’t see my nephrologist again until next year but I agree with his assessment that since nothing has really changed with me, unless something does change or happen, there’s no need for me to see him more often.

Besides, I see my PCP like every three to six months and he orders the same lab work for my kidney function as my nephrologist does and… I never did like people telling me stuff I already know and know well. She asked me about dialysis and, okay, I know about it; I used to work in a dialysis center and, yeah, sometimes, I have nightmares recalling a lot of the bad shit that can be associated with dialysis but she’s talking to me like my kidneys are going to totally fail in the next five minutes.

I’m stable. Both doctors agree that I am. My lady stays on me to drink water; I’m on top of this because I have to be. She’s talking to me about my blood pressure and that I should check it three times a week and, honestly, I don’t know why because my blood pressure has been consistently in the normal range for years and it’s not like I don’t check it – or I get nagged into checking it – because I do and every time, my blood pressure is smack dad in the normal range.

I take my blood pressure medication religiously; I don’t miss taking it or any of my other medications. I understand that she’s not only a nurse but an advocate in these things but the one thing that bugs me about this service is a lack of communication with the various nurses I’ve had and I kinda don’t like having to go over my entire medical history because they can’t assign me a nurse who’s gonna stay with me in this.

To make things worse, my lady caught a cold after we came back from Mexico and… she gave it to me. I feel crappy and, last night, I happened to be looking at my calendar and, fuck – I have an appointment at 11:30 but because I’ve cough up both lungs, one kidney, and both of my nuts, the last thing I felt like doing was getting up that fucking early and thinking that this was a home visit that I didn’t want to be bothered with and I wasn’t of a mind to wind up having her catching my cold and… where did I put my masks? Eh, I have no idea where they are but, thankfully, this was a phone visit and… me telling her my whole history – again.

I know what things I’m supposed to do, like, drink all the water I can tolerate; make sure my BP is normal; watch my weight and my diet. Make that appointment with the urologist and, honestly, I forgot to do it, so I’ll do that in a little while even though I’m not looking forward to it. It’s just that unless something bad happens, I’m not going to worried about this until or unless my doctors have an oh, shit moment – and I’m going to have one of those before they become aware of it; if I need to go the ER, I’m going and that’s the size of it.

I got the impression that she wasn’t happy about my doctors saying that I’m stable at this point. I get that her job is to also educate me but there’s nothing she can tell me about this that I don’t already know about because I have two doctors and a woman who aren’t likely to allow me to forget stuff. Thanks to this damned cold, I really didn’t want to talk to her – period. I feel like shit while feeling like I’m getting over this and, um, sometimes, I’m not a nice person when I’m feeling like this but I have to be because she’s got a job to do but in me, she has a patient that she doesn’t have to worry about or fuss with.

She’s explaining to me how high blood pressure can affect and damage your kidneys and, yeah, I know this because my PCP, urologist, vascular surgeon and nephologist made it a point to tell me to take my BP medication and don’t miss a dose and what’ll happen to my kidneys if my BP isn’t under control and, of course, my lady is quick to ask me if I took my meds so my BP is the least of my worries.

My doctors are on top of this and so am I and it makes the nurse… redundant. Dialysis is one of those bridges to be crossed if I get to it and there’s no need for me to get all bent out of shape over something that may or may not become necessary since she also said that a lot of people have stable kidney disease and dialysis isn’t required and, so far, I seem to be one of them.

Knocking on a lot of wood. I’d be more receptive to the nurse if I didn’t have this fucking cold and that’s on me but it did irritate the shit out of me to, once again, have to explain shit to a different nurse time and time again and, yes, I did say something to my insurance carrier and the service about this because there seems to be a lack of communication and sharing of information and… it just pisses me off.

Uncharacteristically, I’ve been up since 9:00; I woke up first at 7:30 to go pee, then again at 8:30 and for no good reason so, okay, fuck it – I’m up and that means I’ll be dragging my ass later on and still coughing up stuff and feeling like I’m being beaten with a baseball bat. It’s not been a good day for me but it is what it is…

Living With PKD: 28 April 23

As bad as PKD can potentially be, there’s a lot of funny stuff about it like… farting, for instance. My abdomen is so bloated because of the cysts and I just have to laugh when I stand up or sit down and I… fart.

Or rubbing my sides – and it’s weird to feel my kidneys bulging, by the way – and… either a poot or a fart and, sometimes, a really loud one but, thankfully, none of the smelly variety except first thing in the morning and those are the “I gotta do the number two” variety.

Or… just walking and a fart or two will sneak out. Or lying down and turning over and… cutting the cheese. It’s annoying because I know what’s making me fart so much – my bloated kidneys pressing on my intestines just enough to get me to pass gas when, um, let’s not and say I did.

I laugh about it because it’s funny… and it’s better than letting my condition fuck with my head. It’s funny/not funny that I had to get bigger undershirts because the large ones… like to ride up my stomach and like they have a mind of their own. My underwear… don’t fit right; I had to throw on a pair of shorts the other day and… I couldn’t fasten the fastener – and this was a pair of shorts that, before my abdomen blew up, were too big for me. The whole issue gets exacerbated because I take Lyrica for my neuropathic pain and it put thirty pounds on me… somewhere. I normally weigh between 175 and 180 when I’m not taking Lyrica but taking it has seen me weigh as much as 235 which, all by itself, makes shit funny because I learned that once I get past 180 pounds, I get… clumsy.

Stumbling and tripping over my feet and that’s on top of the deficit the stroke left me with. And… I laugh because it’s better than crying over some shit that I can’t do anything about. My recent lab work showed that my kidneys are still stable – not getting better or worse and that’s a good thing but, man, all this farting! I was going from the living room to the room where the computers are; I bumped into the recliner and… farted. I bent over to put something in my “junk box” under my desk and… farted again. Last night, I’m watching some damned good hockey games, went to stretch and… farted.

C’mon, really? The good thing, again, is that they don’t smell like something crawled up inside me and died but the running joke about it is that everything I eat and drink… mysteriously has beans in it. It’s… just something I have to live with and something that I can laugh about.