Tag Archives: Health

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.


Posted by on 1 April 2022 in Living With PKD


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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.


Posted by on 17 December 2021 in Life, Living and Loving


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29 February 2012, a leap year day and the day I underwent what would be my first abdominal aortic aneurysm surgery and the one thing that scared me more than having a stroke did.  While having untreated high blood pressure has been described as a ticking time bomb, having an AAA is a bone fide, very real and literal bomb and one that may go off… or just sit there.  Maybe it’s not a bad thing if you don’t know it’s there but these things fall into that category of what you don’t know can not only hurt you, it can kill you, a point I was reminded of when that actor who played “Tommy” on “Martin” died because his AAA ruptured. I know, from experience, that knowing it’s there and understanding the danger is even more nerve-wracking and as I said when I first talked about this, they couldn’t schedule the surgery fast enough; in fact, when the doctor who told me about the AAA sat with me and explained the situation, I was preparing myself mentally to wind up on a table that night.

The repair was made, follow-up checks kept religiously and everything kept looking good but in the back of my mind – and after having read up more on this problem, the trepidation was still there because given the way it was repaired, eh, there were still some risks but mostly being around very powerful magnets or being subjected to blunt force trauma, like getting hit in the abdomen by a car.

15 November 2016… time for the yearly ultrasound… and I knew something wasn’t right when the ultrasound tech not only did the scan a second time but called someone else in to look at it as well.  I could see what they were looking at but I couldn’t see what had them what I’d call “concerned,” for lack of a better word.  After seeing my doctor and being told that a CAT scan was needed, I knew something was amiss – but I still didn’t know what and my doctor isn’t the kind of guy who’d give me information without it being confirmed first; he said he needed a more detailed scan so he could be sure of what he was looking at.  As I stood at the checkout desk, I’m thinking there’s something wrong with my implant… but, hmm, if it was something wrong and seriously wrong, I wouldn’t be standing here getting scheduled for a CAT scan and thinking about what he’d said:  “Once they scan you, you have to stay there while I look at the film so I can decide if another scan with contrast is needed…”

I learned, from an earlier yearly exam that he prefers I get scanned with contrast (he had a hissy fit when the radiology people mistakenly gave me contrast for a scan) so while I’m not worried, yeah, he’s got my attention.  I get home and I’m talking to Linda about this and we both agree that he – my doctor – wouldn’t order this unless he suspected something wasn’t right but, as he told us, not an emergency situation.

29 November 2016… and time for the scan from hell.  First, upon checking in, the radiology department said they didn’t have me scheduled for any scans even though the script I gave them had the time and date for the scan and when it was made.  Eventually, they found it but I was under the impression they weren’t happy about how the appointment was made – not my problem, though; I’m here to get scanned and, hopefully, once and find out what my doctor wanted a better view of.

On the table and, wow, just being in the area where there are machines with superconducting magnets still make me nervous since I know these are the kinds of magnets that can affect titanium – but I also know that as long as I’m not standing next to one that’s operating in a specific range  there’s no danger of my implant being made to move by these powerful magnetic forces.  These people are professional, they have my chart, and it’s not like they’ve never had to scan someone with an implanted endograft before.

First scan is done; why do they always seem to tell me to hold my breath while I’m in the middle of exhaling?  My doctor had ordered that I remain on the table until he could pull up the scan from his office but I went back to the waiting room, hoping this won’t have to be repeated… but no such luck:  Time for the contrast scan.


I get taken back to another area so they can check my kidney function; they know I have polycystic kidney disease (the bad version) and while it’s not giving any issues, the radioactive iodine might cause an issue so I gotta be tested to make sure there won’t be a problem.  The test only takes a minute using a device that reminded me of how diabetics check their blood sugar levels – and we’re good to go.  The tech puts an IV line in, attached a syringe of contrast to a port, and in it goes… and I’m back on the table being scanned and told to hold my breath… while I’m exhaling again.

Now it’s off to my doctor’s office and it’s a bit of a hike from where I got scanned and it’s been a long day but we get there, check in and, before my butt even settled onto the chair, I get called back.  Blood pressure and temp gets checked and logged and a few minutes later, my doctor arrives… with another doctor… and now I know something is wrong and I’m about to find out exactly what’s wrong.

The short explanation was my implant was leaking, causing blood to flow back into what was left of the aneurysm sac and, as such, not allowing it to shrink as it should.  Not life threatening, he assures me… but this needs to be fixed but in a way that doesn’t cause some blood flow issues, like cutting off the flow of blood to my colon (very, very bad) or cuttingn the flow to my buttocks and giving me some pain similar to having peripheral artery disease – which I don’t have, thank God.

I love this guy and the way he explains things to me; he says, simply, that he needs to make the legs of my “pants” longer and I know what he means because the implant does look like a pair of shorts that can have legs attached.  So… I need surgery again and he cracks me up because he tells me this like I’m gonna tell him I don’t want it done; sure, I’m gonna diss what’s really life-saving surgery.  He’s funny in an annoying way but as a vascular surgeon, he knows his shit and I’ve already trusted him with my life once and have no reason not to trust him again.

Back at home and absorbing all of this and awaiting phone calls to confirm my surgery date but also wondering what he’s gonna do that it’s only gonna take a couple of hours to do it and maybe a day or two in the hospital.  No, I didn’t forget to ask – it was just that he said he had to think of a way to do this without giving me any problems so, okay, I trust that he’ll figure it out… but I’m still curious about this since, when I first got implanted, it took like six hours to do it and I spent three days in the hospital.

07 December 2016… it’s Pearl Harbor Day, the date Delaware ratified the Constitution, and it’s also my baby’s birthday.  I hadn’t wanted to get operated on this date but we were sure the doctor wanted this done before Christmas and, later, we learned that this was the first available date that the special operating room they’d need would be available.  In at the crack of dawn, signed in, prepped for surgery, operated on, spent a very miserable night in the hospital thanks to the out-of-control roommate I got stuck with.

It’s been almost three months since the surgery and I’ve already been scanned to insure everything is okay… but I was confused because like a week after the surgery, I get a thank you card from Preoperative Services thanking me for letting them take care of me (a really nice touch, I might add) as well as a card that has information about… and endograft device that’s different from the one I’ve been carrying since 2012?  Wait… what did he do?  Did he remove my original implant and replace it with another?  Yes, I knew they could be removed but, um, if it took six hours to put it in, how come it only took two hours to remove it and replace it?

Okay, I had to remember to ask him how he managed this magic trick but, in the meantime, I wanted to know why I had a different implant and, after some searching, I found that the way an endoleak is fixed is to implant the device so that the leak is stopped.  Okay, makes sense – he made the legs on my pants longer but with a different – and, perhaps, better device… still wanna know how he did it, though and I admit to being seriously impressed.

Come to find out that he didn’t remove my original device:  He added a second device inside the original one!  Still impressive given the precision this had to require.  The endoleak has been stopped, I’ll have to undergo more frequent checks… and the trepidation remains.  From what I read, the chances of another leak are slim but possible and I find myself hoping this doesn’t happen because it’ll most likely mean an extensive surgical session to remove the implants and effect a traditional repair… and that bothers me more than it probably should.  If it had to be done, well, I trust my doctor to get it done but, shit, I wouldn’t be looking forward to not only having my abdomen opened but also the inside of my thighs – I suspect that my longer pants legs now extend a bit further down into my femoral arteries.

I know, at this moment, I have nothing to worry about but I’m not quite sure why I’m worried about a possibility that wouldn’t be made apparent until my next scan in July…


Posted by on 14 March 2017 in Life, Living and Loving


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