Living With PKD: Another Update

I was… mystified while listening to a voicemail message from my nephrologist’s office. Apparently, now he wants me to consult with my urologist about the cysts and… I’m wondering not only why but also why he’s done a 180 about seeing the urologist in the first place.

As I call the office to speak with the staffer who called me, I’m wondering if he’s having an “Oh, shit!” moment but I wasn’t going to speculate – let’s see what this is about. I get connected to her and I let her know that I’m “confused” because I was just there the other day, we talked about everything, and agreed that unless there’s a problem, there’s no need for me to undergo the procedure to remove the cysts and, as such, no need for me to see my arch-nemesis.

She’s… “confused” because she thought that he had told me about this – and he didn’t but he wants me to set up this consult so that the urologist is aware of what’s going on; she told me that they sent my chart over to the urologist’s office and my first thought was, “Okay, that should tell that jerk what’s going on…” and my second thought was, “You’re being stupid about this; his (my nephrologist) recommendation makes sense because if something surgical needs to be done, the urologist will be up to speed and all that. And we rescheduled my appointment from a year from now to six months from now. Prudent and sensible… but.

Not an “Oh, shit!” moment but if you’ve been following this thread, you know how I feel about the urologist – and I let the woman I was talking to know about this (and because I knew she’d write it down so it can go in my chart) and, yeah, sure, I could see another urologist in the practice but, again, my arch-nemesis already knows some stuff about me. My nephrologist wants me to make this consult appointment “as soon as possible” but, yeah, not feeling that at this moment, not with the holidays coming up so I will, reluctantly, make the appointment in the new year, which will give me a bit of time to temper – or set aside – my animosity towards my arch-nemesis because my continued health takes precedence over everything else.

I’m up and running around starting the morning routine and I’m thinking about if there was a doctor who, basically, traumatized me and it took me a moment to remember a dentist who I called, “Dr. Kill Pain” and for obvious reasons. In the area, he was a preferred dentist because (1) he was inexpensive and (2) you could walk in and get whatever treatment needed right away… but. I recalled the few times he had to pull a tooth and, this one time, I actually punched him because of the pain he was causing me and his insistence that I couldn’t be in pain, and I needed to stop acting like a little girl and hold still and I whacked him again because no one gets to talk to me like that. After that, I’d go to the more expensive dentists and would learn that he had pulled teeth that he could have saved and when I mentioned his name, well, those doctors knew who I was talking about, and professionalism kept them from telling me how they really felt about this man – but what they did say wasn’t what I would call nice.

But, since I was never going back to his practice, I got over the trauma and pain he caused me; I even got over him not doing more to save the teeth he’d pulled and life went on… until that fateful moment where my urine test revealed microscopic traces of blood and… I got introduced to a new and different trauma and unlike nothing else I’ve ever experienced.

I’m bustling around in the kitchen, washing a couple of dishes and setting up the morning coffee and tea and my mind is… divided about having to see the arch-nemesis again. The logical and sensible part of my mind is saying, “Look, all that shit happened and it’s done and over with. You were right about not having bladder cancer and he was wrong; get over it and focus on the important issues at hand!”

The other part of my mind was saying, “Yeah, what-the-fuck-ever. That asshole put us through some shit that wasn’t even necessary and I’m sure that you really haven’t forgotten what it felt like to be pissing huge blood clots, have you?”

14 December 22

This got cut short because my computer decided to do a bunch of updates requiring a reboot and… I wasn’t gonna wait for it to do that. I’m not looking forward to having to see my arch-nemesis and I just might ask to see a different urologist in the practice but that means going through some stuff so that they can get the familiarity with me that my arch-nemesis already has… but I will make the appointment no matter what.

And, no, I have not forgotten what it felt like to be pissing huge blood clots. I might have a few enemies left who should experience this.

I see the sense in removing the cysts and more so if, again, they might impact the two endografts I have implanted that repaired the abdominal aortic aneurysm I had. My vascular surgeon, as of my last visit and MRI, didn’t have an “Oh, shit!” moment and I’m sure my nephrologist didn’t have one, but his recommendation is… prudent as far as “just in case” is called for. I just do not trust my arch-nemesis to do what he did the last time I saw him and have an “Oh, shit!” moment and I don’t trust him to not remove a kidney, which I have learned could be possible and depending on what’s being seen in there through the laparoscope.

Kinda fucked up that I have more fear about this doctor than I do having a disease that has no cure…

 

Living with PKD: An Update

Saw my nephrologist the other day and the verdict is… I am still stable. We talked about the laparoscopic procedure that can remove the cysts and he answered my biggest question: Can this work toward improving my kidney function and the answer is… no.

The best it can do is alleviate any serious pain I might be having or if the cysts mess with my implants – and that would be seriously serious. Otherwise, there’s no point in undergoing the procedure and more so when chances are that I’ll wind up with the urologist who I have a very irrational hatred of and, yes, I know that I do but if I had to have this done, yeah, he’d probably be the one to do it since he’s more familiar with me and… fuck.

One high point was him telling me that my lab work looks better than it did six months ago. I know that my sodium levels are high and getting them down is going to take a lot of work and in the form of drinking more water than I know I can handle. I wind up drinking so much water that I can feel and hear it sloshing around in my stomach and… that does not feel good. I laugh because I’m not prone to experiencing sea sickness but sometimes I feel it because of the sloshing and my body is telling me, “Drink some more water and find out what I’ll do – I dare you!”

What it will do is make me throw it all up. Then I have to drink more water to replace the water I just barfed up. He reminded me that there is no cure for this and while there is a medication for people with chronic kidney disease, it doesn’t work for people with PKD. Well, that sucks.

But for now, no dialysis and unless things take a turn for the worse, I won’t have to pray for a kidney or two. Still, my nephrologist says that he’ll see me next year – unless something happens and as I’ve been saying, if something happens, he most certainly will find out. Otherwise, every day is more of the same.

Dealing with my lower back hurting and, sometimes, like someone’s using my back like it’s a punching bag. This goddamned bloating is making me insane, and I know there’s nothing that can done about it – I have this urge to get some anti-bloating stuff and chug it down and, yeah, I even gave some thought about getting some Midol because, huh, if it works on women who have to deal with bloating during that time of the month, it might help me. I’d have to look at the packaging and it would suck if it says that if you have kidney problems, don’t take it.

An update. I just looked it up and it says that if you have kidney stones, talk to your doctor before taking it. I don’t have kidney stones, thank all that’s holy. I’m tempted to try it just to see if it’ll ease this bloating but it’s interesting that “Midol Bloating Relief” is… a diuretic. I’m already taking one – hydrochlorothiazide or HCTZ; I’ll have to drop my neurologist a note and ask him if a different kind of diuretic might help with the bloating but not give my kidneys a fit. Chances are that it won’t and I can imagine him laughing over me even thinking that it would help with this.

I look at myself in the mirror every morning and… I look like I’m pregnant. I know it’s not belly fat. I can feel my kidneys pressing against my abdominal walls. Feels weird. This big-assed belly upsets my center of balance which is fucked up enough because of the stroke I had and leaning forward too far becomes a comedy trying not to fall over… and like I’m a cow that got tipped.

At best, it’s annoying. Kinda funny to be standing up and holding my back and just like I’ve seen pregnant women do. I don’t like that there’s nothing I can do about this other than to keep drinking all the water I can manage. But I’m stable. If my nephrologist doesn’t have an oh shit moment, I’m not going to have one and, yeah, if my vascular surgeon doesn’t have one, I’m good. He told me that he looked at the MRI I had done back in June (or was it July?) for my vascular surgeon and because the scan includes my kidneys, he said that, yeah, I’ve got some pretty big cysts in there but, all things considered, everything continues to look good.

See you next year. Living with this, for now, means trying not to pay attention to the fact that I have PKD. It could prove to be fatal… or not even. It’s… uncomfortable but I can handle that but it is bothersome. I wear bib overalls a lot because of my bloated belly and they’re more comfortable than wearing regular pants and having to wear a belt and, shit, let’s not and say we did and getting bigger pants but know that despite wearing a belt, I’ll probably spend a lot of time pulling them up – and they’re only going to go so far before running into my bloated abdomen. Shit. And I still have to look in the mirror to see my dick. SMH.

But I’m okay. Stable. A bit better than I was six months ago. I’ll take the win. I weighed in at 213 pounds but that’s because I take Lyrica for my neuropathic pain and, yep, I get the side effect of gaining weight. I could stop taking it and drop down to my normal weight of being between 177 and 180 but I need something to keep this fucking pain at bay because it’ll fuck with me more than my kidneys fuck with me. My “kidney nurse” that my insurance provides almost lost her mind the last time I talked to her and told her that, at the time, I weighed 208 and she hurried up and said that I had to lose weight… until I told her about the Lyrica.

I’m kinda “afraid” that if I stop taking it and lose the weight, it’s not going to make my belly “any smaller.” Can’t seem to win for losing on this one but I’ll still take the overall win.

 

Living With PKD: An Update

I’m still stable and all of my doctors are happy campers but, man, it’s literally a pain in the ass! I’m sure that the weight of my kidneys are pressing on my sciatic nerve and making my butt hurt something fierce; it feels like I took a seriously good and hard kick in the ass and the only time it doesn’t hurt is when I’m lying down.

It’s making me seriously consider having the cysts removed… but what will be the outcome? I have so many questions that I’ve not found online yet but I’m sure my nephrologist knows the answers and while I kinda hate waiting for my appointment in December, I’ll just be patient unless this pain in the ass gets any worse.

I’d gone over all the information sent to me by the team that works with my health insurance and it’s not really telling me anything I hadn’t already known, figured out, or I’ve been told by my nephrologist and PCP; keep my cholesterol and BP in check. Drink lot of water… then drink some more. Avoid sodium-heavy stuff and, well, shit. That’s not that easy to do even though I know there are low-sodium foods and, wow – cut out most of the sodium and you’re left with food that is pretty bland or downright yucky but some also “make up” for the reduction of sodium chloride by adding either magnesium chloride or an even bigger problem, potassium chloride.

I already know those two salt substitutes tastes nasty as fuck and in my condition, potassium is to be avoided as much as possible. A kind of an aside: Today’s my late father’s birthday (he would have been 89) and I remember my sister calling me one day and was losing her mind.

She said, “Guess what your father is doing!”

I said, “You mean your quarter, right?” which was a long-standing running joke between me and my three siblings. She kinda laughed but said that this was serious and I’m thinking, “Uh oh…” and thinking about how many times I got a call from her about him being back in the hospital and he might not make it this time and, okay, what the hell is he doing?

I had to pick my jaw up off the floor when she told me that he’s on pure oxygen because of his COPD and… he lit a cigarette. Now I know why she was losing her mind because I’d lost mine for a moment; I mean, what the fucking fuck was he thinking about? I listened to her venting about this and after talking to her, I called him and asked him what the fuck was wrong with him doing that – didn’t he know he could have caught on fire and that tank of oxygen could have exploded?

He said that he knew… and didn’t really care. He said, “I’m gonna die from this shit anyway so I don’t see the point in not doing what I feel like doing.”

I read him the riot act including that he could have burst into flames and taken my sister with him, and I knew that he was… shrugging and, man, was I pissed off. I couldn’t understand why he’d do something so dangerous and why he had the attitude that he did.

I understand it now. It’s hard to ignore what’s going on with my kidneys between this goddamned bloating and, now, the pain in my ass to go along with the pain in my lower back. I’m not getting any worse so no real worries there (knock on wood) but while I do keep an eye on what I’m eating for both sodium and potassium content, it’s like… well, I sometimes “go over the daily limit” because I don’t see any real harm in cheating every now and then… as long as I don’t make it a habit and, man, given how much I love to eat, it’s been hard to see my favorite foods… and to walk right past them.

Maybe this is going to turn into a life-ending problem and maybe it won’t and I know that there’s nothing I can do about it although the cyst removal procedure might make things less harrowing… or maybe it won’t. The thing I have to do – and that I’ve been doing – is staying cool, calm, and collected about it and as long as none of my doctors wind up having an “oh shit” moment, I’m good. I recently saw my vascular surgeon and I know he saw my yearly CAT scan and… he said everything with my AAA repair still looks good and I re-confirmed that I was still seeing my nephrologist (like I’m gonna not go to him, right?) and he said that was good.

I know him well enough by now to know that if he saw that my kidneys were fucking with my abdominal aorta and its repair, he would have said something and would have had me back in the office and with a plan to deal with the situation. He didn’t do that so, yup, both things are fine as far as he’s concerned, and I have no reason to question him about it.

How do you live with this? You just do. You don’t let it fuck with your head. I look at my “beer belly” and I can laugh at it, well, except when it gets in my way like when I have to bend over and, well, it’s just funny – but that pain in my ass isn’t. I laugh at myself because I’ve caught myself walking around or standing just like pregnant women do because of the lower back pain and, yeah, that’s just funny, ain’t it?

Yeah it is. I just wanted to take a moment to get this out of my head…

 

Living With PKD: Where Are My Feet?

Having PKD has some very serious implications, yet, there are things about it that just gets my sense of humor started…

Like washing up this morning and looking down and noticing that, shit – I can’t see my feet. I can barely see my dick (thanks, Dad, for your contribution to the size of my dick) but, yeah, shit, I can’t see my feet anymore without kinda bending over.

Two things. The first was me “remembering” that since this damned bloating really got going, I haven’t been able to look straight down and see my feet for a while now. The second was that I found this to be quite hilarious.

I look like I have a beer belly or, as I sometimes think, I look quite pregnant and being a bi guy who has been screwed by other guys, you might be able to appreciate why I find this to be hilarious. I’m looking straight down and trying to look past my belly and laughing to myself because I can’t see my feet because I look like I’m like three or four months pregnant.

And sometimes, I feel like I am. My lady insists that there’s no way I can really know what that feels like since, um, I am a guy but there’s a feeling of… fullness and something is definitely growing in there but I have learned to find the humor in situations that, soberly, aren’t all that funny… and having kidney disease is seriously not funny or humorous in any way.

I had bent over a little to “make sure my tootsies” were still there… and that slight movement had my oversized kidneys letting me know that they didn’t like that. I felt as if I’d been rabbit punched in both kidneys at the same time and my lower back sent a message that said, “Don’t do that again!”

Yeah. That. I know that at this point in things, there’s nothing I can do about it… but I can laugh at it because that’s way better than being morose about it. The back pain is no joke and I get to laugh at and to myself when it gets kinda bad… and I’m walking around holding my back and just like I’ve seen pregnant women do and, yeah, sometimes, I catch myself waddling and, yeah, it’s pretty funny with that above-mentioned thing being considered.

As I was walking, waddling and holding my back going to the kitchen (and even leaning back as I’ve seen pregnant women do), I’m grinning like an idiot and laughing to myself because this is really funny to “notice” that I can’t see my feet when I look straight down. I’m walking around naked and trying not to bust out laughing; it’s bad enough that my lady thinks I’m crazy to begin with so there’s no need for me to do something that keeps proving that I might need a straight jacket. I get some underwear out of the drawer and it’s getting funnier because bending over is… a problem Now, it’s bad enough that my stroke left me with right-side deficits and having a hard time lifting my right leg… but now my belly is in the way.

And, no, sitting down to do something so mundane and routine doesn’t help. My back is pitching a bitch because I’m bending over to get my poor right foot in there, then still bent over to get my left foot in there and laughing to myself over the fact that I actually have to look at what I’m doing… because my belly’s in the way. I get my underwear on, slap on some deodorant and now I’m in my T-shirt drawer and looking for the large sized ones I had to get because the medium sized ones – and the size I normally wore before this became a problem – don’t fit right and just thinking about how those T-shirts look on me had me giggling to myself…

Because it’s pretty funny. If I put one of them on, well, let’s just say it doesn’t cover things like they used to and the bad part is that the large ones want to start crawling up my belly when I’m sitting or lying down. It’s pretty annoying, to be honest, but I’d rather laugh about it than to be all depressed or whatever over stuff like this and because of something I can’t do anything about. It just is what it is. Although, not being able to see my feet did take me back in time to a moment where I was talking to my poly wife about whether or not I thought her belly was too… poochy for the top she was going to wear and I had asked her to “kill me” if I ever got one of those bellies that hung over my waist and could hide the fact that I’m wearing a belt.

And… I have one of those bellies now. Karma, I’d suppose but remembering that moment in time had me laughing. I’m finding that living with PKD isn’t totally about what it means to have it and how bad it can get: It’s also about not stressing over any of it since, again, there’s not a lot you can do about it. Like, given all the water I have to drink, I slosh at times. It doesn’t feel good but it’s also funny, too, and that’s the thing that I know I should pay more attention than what having this is giving me problems with… like not being able to see my feet or having to look in the mirror when I’m trimming down my pubic hair which isn’t all that different from when I shave… except, before this aspect of PKD hit me, I could look right down at my crotch without anything hindering the view.

Hey, at least I can see my dick! Yeah, being a guy means that being able to see it and “make sure” it’s really still there very damned important and I just crack myself up to find myself actually looking for it when I have to pee. Just frigging hilarious and it has to be because the alternative – being depressed about something that’s really trivial – isn’t a place I want to be in and, besides, I already have enough shit to be depressed about thanks to the stroke which, by the way, doesn’t depress me so no worries about that.

I’ve been writing this and chuckling to myself. Just a few minutes ago, I’m in the kitchen and dumping rice into the pot and talking to my lady; we both walk out of the kitchen… and we both grab our backs in the exact same way and were arching backward at the same time… and it was all I could do not to bust out laughing.

Sigh. This hasn’t gotten seriously serious for me and I hold out the hope that it won’t get that serious but when someone learns that they have PKD and wondering what to do and all that, I would readily suggest to find the humor in it even though it’s not funny. Because getting seriously down in the dumps about it isn’t a good thing to do or a good place to be. Do whatever the doctors tell you to do; for me, again, it’s drink water. A whole lot of water. I’m guzzling water like a very thirsty camel and that image alone gets me to smiling and taking my mind away from the fact that I hate drinking boring-assed water. I’m going to probably have to replace all of my T-shirts and get a size that will keep the damned things from crawling up my belly and negating me having to keep pulling it down and that often means unzipping my onesie and looking hilarious trying to get it back in place.

Or having a good time laughing over the fact that I can’t see my feet because my belly looks like I’m pregnant and that gets me giggling because I don’t know who the daddy is… or when I got knocked up to begin with… and picking with my lady and blaming her for my “pregnancy.” The looks she gives me makes me laugh and, yeah – being able to find this funny, again, is way better than the alternative.

In lieu of there being medications to help with this, laughter does become the best medicine.

 

Living With PKD

I decided to create a new category to talk about this.

I remember being told that I had polycystic kidney disease and in a bit of a “backhanded” and “Oh, by the way…” kind of way. The doctor who is now my vascular surgeon showed up right before I was about to undergo a stress test; I’d gone to the ER with major chest pains and they put me through the “heart attack protocols.” So… stress test. That’s where they inject you with some stuff, put you on a treadmill – while wired for sound – and just really stress your whole body… except that damned stroke made it a bad thing to put me on a treadmill and I made sure to tell them that since, having had one years before this event, they crank the treadmill up pretty fast… and I can’t walk on one at any speed because my right leg ain’t on the same page with my left one anymore.

So they opted to stress me chemically and the vascular surgeon showed up right before the test to tell me that I had an abdominal aorta aneurysm and in between explaining this and what could be done, he really did say, “Oh, by the way – you have polycystic kidney disease.”

After my surgery/procedure to deal with the AAA, a nephrologist visited me and we talked for a few; peed in a cup for her and she came back and said that everything looked okay for now and I should follow up… except I never got the information needed to do that. Oh, well. Jump ahead a few years.

I’d had another AAA procedure done to stop a leak that the first one developed. No mention of my kidneys but I’d realize later that given the area I get scanned to check on my now dual implants, they can see my kidneys – the implants are installed in the abdominal aorta just below where my kidneys attach to it. Okay. No biggie. However – a couple of years later, my PCP gets concerned because a routine lab test report indicated microscopic traces of blood in my urine.

What I went through at this point was something that, hmm, I would wish on my worst enemy but I’d not want to ever experience again. I get sent to a urologist who first says that he’s surprised I’m not on dialysis because of my PKD… then tells me I might have bladder cancer… after he shoves a scope into my dick. I’ve been catherized before… while I was asleep so being awake and he’s shoving the scope through my dick to look around in my bladder. He’s telling me to breathe and relax and I ask him if he’s ever had this done to him and he says that he hasn’t and I gave him a look that said, “Then shut the fuck up!”

He was so sure that I had bladder cancer… and I was so sure that I didn’t. I go through a procedure where they were really going to get all up into my bladder and do a biopsy and, since he was convinced of his diagnosis, put in some anti-cancer medication but, as it turned out, um, no bladder cancer and I wasn’t at all happy to have been put through this and find out what it’s like to pass blood clots through my dick.

I go to the nephrologists my PCP sent me to; I report in and I’m at a loss to write down the name of the female nephrologist I saw years before and also thinking about being a new patient… then finding out that they knew me already. Huh. The one that saw me had been one of their staff doctors. Huh. Now, before I get to this part, I gotta tell you about the ultrasound.

I got sent to get one and it went well… until they were looking at the scans and I knew something was “wrong” when they did it again, looked at it again, and sent for the staff radiologist to look at the scan… so I got up to look at it, too… and I blurted out, “Holy shit – are those my kidneys?” They’re gigantic. Misshapen. Fuck. That’s when I got sent to the nephrologist. Okay. Getting back on track.

I see the nephrologist and one of the first things he says to me is, “I don’t know why you’re here since there’s nothing we can do about this.” Well, I kinda knew that and told him that my PCP told me to come here so here I am. He’s going through the stuff about my ultrasound and my “adventures” with the urologist and he even laughed when I told him what the urologist said about me needing to be on dialysis, then said, “No, no – we’re not there yet and there’s no real guarantee that you will.”

He explains this to me. Probably genetic or one of those “shit happens” kind of things. Not everyone with PKD winds up on dialysis or needs a transplant but, yeah, this can get fatal. We’ve been in a “wait and see” mode of things. He and my PCP are keeping an eye on my lab work; I’ve been going to the nephrologist once a year and I have long since adopted the frame of mind that if my doctors aren’t going, “Oh, shit!” then I’m not going to be worried about it. Their order to me was: Drink water. Lots of water.

Okay. My nephrologist told me that at this point, the worst thing I might have to deal with is my lower back hurting and he was right about that. Maybe an occasional headache and he was right about that, too. My abdomen is very distended – if you didn’t know I had PKD, you’d swear that I have a beer belly… except, I don’t drink beer. Yesterday, when I was thinking about writing this, I realized that all of the guys I’ve seen with huge bellies might have PKD… and they may not know that they do.

Then I find that my health insurance gave me access to a group of people whose purpose, I guess, is to monitor folks with kidney disease and when I got told about it, I was like, “Oh, okay – whatever.” I’m talking to the nurse assigned to me and even she asked me if I was on dialysis and if I was seeing a nephrologist and I said no and yes to her questions. We get into the details and she admits that she has to get my records from all of my doctors including my vascular surgeon since this could mess up my implanted devices. We talk about some stuff – medications, my blood pressure, the results of my most recent lab work and I’m really trying not to laugh at her when she tells me that everything looks pretty good and chances are I won’t need dialysis but ya never know.

Lot of fun. The “hardest” part about this is not letting the implications fuck with my head. The near-constant lower back aches are a pain in the ass; it’s bad enough that my stroke fucked with my ability to walk and if you’ve ever had a lower back ache, you probably know how that can affect the way you walk. I drink all the water I can manage to drink without throwing it back up; most days and when I walk, I slosh; I can hear and feel it and it doesn’t feel good. I read that PKD causes bloating which makes sense given that mine are taking up a lot of space and, yes, I can poke myself and feel them. It’s… annoying. My underwear doesn’t fit right anymore and wearing pants with a belt, ugh, having the belt buckle digging in my “beer belly” is not a good feeling.

Every so often, I feel like I took a kidney punch; a moment of some degree of pain which I’m guessing is a cyst popping, something my nephrologist told me to expect. There’s no real harm being done other than if a cyst pops, it’s gonna hurt and they do. Not “oh shit” bad but bad enough to get my attention or, if I’m walking, stop me dead in my tracks for a moment or two. I feel like I spend more time peeing than I do anything else given all the water I drink and, sheesh, I know I gotta do it but drinking water is boring as fuck and I really do get tired of drinking it since water tastes like nothing. I looked into getting some flavored water but, bleh – they have either artificial sweeteners or those “natural sweeteners” that is said to taste like sugar… and that’s a lie – I know what sugar tastes like. Those sweeteners leave an aftertaste in my mouth that I’ve never been able to get used to as they tend to make me nauseous so it’s plain old boring-tasting water 99% of the time.

I would suppose that living with this isn’t a problem until it becomes one. My nephrologist did say that a lot of people who have this… just have it. No dialysis. No transplants. I can only hope that I’m one of those people because I have no real desire to have to be on dialysis three times a week for the rest of whatever; I used to work in a dialysis center years ago and all I’m going to say about it is that it’s not pretty sometimes. I’m sure the technology has greatly improved since I worked there but, no, not feeling it but if I have to do it, I will – I just ain’t gonna like it.

So, as things stand right now, living with PKD is… uncomfortable. For the last couple of years, I’ve remained in the moderate stage of the disease and I’m keeping my fingers crossed on that one. There’s no cure for this. There’s really nothing that can be done about the cysts. I was told about a medication that might improve one’s eGFR – and, no, I don’t remember what that means but I know what it is – but my nephrologist says that he doesn’t feel that I’d be a good candidate for it and that a couple of his patients that are on the medication, well, one did well with it and with the other, it didn’t help a whole lot.

Just another of the many things that can be on my mind and something I need to get out of my head. There needs to be more awareness of this because a lot of people can have it – and they might not have any symptoms other than noticing that their abdomen is getting bigger. It could be mistaken for belly fat or, yeah, a beer belly. Going to a doctor for routine checkups and, importantly, lab work that includes the test for kidney function is damned important as well as having your urine tested to make sure there’s no microscopic traces of blood in your urine.

There’s nothing to be done for this. I’ve been seeing commercials for a drug that’s for people with chronic kidney disease… but not for people diagnosed with PKD. Bummer. I know there’s studies and medications being developed so there’s that… hope that, say, when I see my nephrologist in… June, if I remember correctly, he might have some news about this. Otherwise, I just don’t think or “worry” about it all that much and I won’t until I have a reason to – my blood pressure will thank me for that.

Keep your fingers crossed – and I have mine crossed, too.

 

Life, Living and Loving: Living With PKD

Back in 2011, I was in the emergency room thinking I was having a heart attack. One of the things they wanted to do was stress test me but, uh, um, thanks to my stroke, putting me on the treadmill would be a disaster – I wouldn’t be able to keep up with the speed necessary to stress my heart. So they were going to do it chemically and as I waited for them to get that ready, a vascular surgeon came to see me and told me that I had an abdominal aortic aneurysm that was going to need repairing and, oh, by the way:

You have polycystic kidney disease. We didn’t get to really talking about that – not his balliwick – but, nope, wasn’t have a heart attack but I needed surgery to repair the aneurysm to ward off it blowing up and taking me out. The repair was successful but one of the doctor’s that came to check me out was a nephrologist and she talked to me about this polycystic kidney disease thing; she had me pee in a cup (for testing) and she came back and said that, for now, it’s not bad but lay off the Coca-Cola.

Well, damn, but, okay. She said that I should follow up with her but I didn’t remember her name (and if she even mentioned it) or what practice she was a part of so other than looking up some stuff about PKD, I put it out of my mind and even thought that she’d follow up with a call to come in and see her.

It wasn’t until like almost two years ago now that I went to have my routine lab work done and the urinanalyis came back as me having microscopic traces of blood in my urine. What the fuck? Now the shit really got interesting: I was sent to both a urologist and a nephrologist and, well, me and the urologist got into it because (1) he shoved a scope into my dick and into my bladder – and I was wide fucking awake and (2) he was insisting that I had bladder cancer and a more invasive procedure was called for… and let me just say that I learned something about passing blood clots that I wouldn’t wish on my worst enemy after the procedure was done and, oh, yeah – no bladder cancer. Now, off to see the nephrologist… after a pit stop for an ultrasound of my belly.

I knew something wasn’t right because they did the ultrasound, looked at the results… and did it again. Then they looked and called in a doctor and, okay, I want to know what they’re looking at and what all the fuss is about so I get off the table, go over to where they were looking at my scan and, holy shit: Are those my kidneys? Normal-sized kidneys are fist-sized… and mine were way bigger and misshapen due to the cysts. I was stunned to see this and they were, too, but I told them I had to see a nephrologist so that kinda chilled them out. But, damn: That would explain why I looked like I had a beer belly… and I don’t drink beer. Shit.

I made the appointment and when I got there and filled out a sheaf of paperwork, I was surprised because they already had me in their system and confirmed that one of their doctors had, indeed, seen me in 2012 after my AAA repair. But talking to the doctor, he was like, “I don’t know why you’re here since there’s nothing we can do about this… unless you need a kidney transplant.” I told him that I had read up on PKD and agreed that his information matched the information I’d found about this but, I was told to see him… so here I am. He had asked me if I had had any dialysis (and the urologist insisted that I needed to be on dialysis but, well, yeah – that guy) and I said no and I thought that he was going to order it and that bothered me because, back in the day, I worked in a dialysis center and, oh, my god… I’d see patients cramping and throwing up and one patient actually went into cardiac arrest (they were okay afterward) so, shit, I don’t wanna do that but if I have to, so be it.

Officially, I have Stage 3 (moderate) kidney disease.

No cure. They’re not even sure why people get this disease but they suspect it’s hereditary but there was no history of this in my family that I knew of. At the time of my first visit, there were no medications or even surgical procedures that could be done but, later, I was told of a new medication that my doctor didn’t think I’d be a good candidate for taking it. He asked me about any abdominal pains and I said that I didn’t have any… but my lower back hurts at times and he kinda laughed and said that he guessed that it would given how big my kidneys are.

So, now what? The only thing I was directed to do was to… drink more water. A lot more water. He told me that the cysts could burst and if that happened and the pain was, in his words, incredible, just go to the hospital so they could give me the good stuff for the pain but, otherwise? Drink water. Get lab work done and he’d see me next year… or sooner if things went south in some way. Did I mention that I can’t drink a whole lot of water without throwing it up? I didn’t? Oh. That. But I gotta do what I gotta do.

I have remained stable: It’s not going to get better but it’s not getting worse. My nephrologist, PCP, and even my vascular surgeon are keeping a very close eye on things via my lab work. There are days when my lower back is “killing” me and some days where the backache is a dull roar in the background. There are moments when I’ll feel a kinda sharp pain on one side or the other and I suspect that it’s a cyst bursting but the nephrologist told me that if that happens, there’s no danger of whatever’s in the cyst giving me any problems. I can be doing… anything and that pain will hit me and either get me making a face or, sometimes, stopping me in my tracks if I have them while standing up or otherwise moving around. At best, it’s annoying as hell.

The only thing I can is to drink water. I recently purchased a one-gallon water bottle (with a straw) that has markings on it to guide me through drinking it all and it’s challenging just looking at the full bottle and, to make it worse, water is boring. I thought about adding some flavor to it, like those Mio things I’ve seen advertised but every one I looked at has artificial sweetners in it and I have yet to come across one they say tastes like sugar but doesn’t leave a nasty aftertaste in my mouth. My tongue doesn’t like that shit and neither does my stomach; that stuff gives me the runs something fierce so I’m stuck drinking a lot of very boring water 99% of the time. Sometimes I’ll get cranberry juice but realized that I can’t buy enough of it to satisfy the requirement to drink a gallon of water a day.

With my new bottle, I have managed to drink half of it in a day; I hope to get to the point where I can suck it all down in a single day… but I’m not really looking forward to it but it’s either this or wind up having to have dialysis and contemplating kidney replacement. Who knew that drinking water could be so tiring? I didn’t… but I know now.

It’s weird because I can actually feel my kidneys bulging out all over the place and especially when I’m lying down but that’s the only time my lower back isn’t hurting. I thought that having my AAA repaired – and having the repair repaired – was some bad shit but this PKD thing seems to be worst even though my nephrologist did tell me that a lot of people have this and never wind up needing dialysis or a transplant, which is encouraging and keeps me crossing my fingers and toes. He tells me that there are things in the works that, hopefully, can really do something about this, like, reducing the size of the cysts but those things are way down the road. He did tell me that he could go in there and do something about the cysts… but they’d just grow back and he said he was sure that I wouldn’t want him poking me in the sides in a vain attempt to drain the cysts.

I shuddered to think that if he did that, I’d be awake for it. Oh, fuck no. I still have a bit of PTSD after that shit with my bladder and I can sympathize with anyone who has ever passed a kidney stone even though I’ve never had that problem. Just saying. I can also sympathize with anyone who has been catharized and they were awake for it, too – I’ve never been awake when that was done to me and I thought that being awake when they removed it was bad; no, it isn’t. Not even close. Gives me unpleasant chills just thinking about that shit. Brrr.

Otherwise, life just keeps going on. I’ve kinda moved away from wearing pants that requires me to wear a belt because that’s uncomfortable so when I have to wear pants, I have my Dickies “Farmer John” pants that don’t give my bulging kidneys a reason to fuck with me a whole lot and, besides, unless I have to go out, I’m not wearing clothes being in the house. I was very worried about this and where my AAA repairs were concerned since my kidneys are attached to the abdominal aorta… and my implanted devices are inside there and just below where the kidneys are attached… but my vascular surgeon isn’t concerned – he gets to see them when I go see him every year so if he’s not worried, I’m not gonna worry. My nephrologist isn’t worried. My PCP isn’t worried but he keeps “giving me shit” about drinking more water and he’s right but I often remind him that he’s not the one drinking all of that water and when moving around, feeling and hearing it sloshing around in my stomach.

He just laughs. It’s a somewhat nauseating feeling but now an “occupational hazard” I just have to deal with. At this point, if the worst I have to deal with is having my lower back aching, I’m good with that. I just wanted to write about this and as a kind of PSA because I had had this “for a while” and had it not been for the fact that I got worked up under the cardiac protocols and getting CAT-scanned, I wouldn’t have known that I even had PKD. No symptoms of any kind. If anyone in your family has had any kidney problems, yeah, you might want to arrange to get an ultrasound to make sure you don’t have this and, hopefully, when you see your doctor, he’s ordering a urinalysis as part of your routine lab testing; any blood in your urine should be taken seriously and investigated further.

I’ve told folks that I have PKD and once I explain to them what it is, they are like, “Oh, shit!” but I tell them that despite the Stage 3 (moderate) tag, I’m okay. I have what looks like a beer belly. My lower back hurts. I fucking hate drinking all this boring-assed water.

See ya tomorrow.