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.