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.