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 “Oh Shit” Moment

One of the… issues I have had to deal with having this disease began when and after the urologist did his “rotor rooter” thing inside my bladder and now, on the heels of this, I felt like I wasn’t emptying my bladder and the way I was able to do before this… clown made my life miserable because he was 100% sure that I had bladder cancer. I had mentioned this to my nephrologist because he had asked me if I had any problems urinating after the procedure and I said that I did and he put me on Flomax and, well, okay, but I wasn’t happy about it.

I’m… happily masturbating one night and I’m all into it and, yeah, I’m on my way to cumming and here it comes and – voila! Those very familiar feelings are flooding every fiber of my being; my dick is pumping away madly and strongly but because I happened to have my eyes open at the, ah, moment of happiness, my feelings went from, “Ahh…” to “Oh, shit what the motherfucking hell!” because… I didn’t have cum shooting out of me.

And to say that I was feeling some kind of way about that does not begin to describe how I was feeling but let’s say that I was both worried and not feeling very manly (another understatement). Have I finally gotten to that moment where… I have no sperm/semen? I recalled the urologist mentioning as a kind of aside that my prostate was “kinda big” and thinking about how the fuck he would know that but, um, he had had me on the operating table and doing shit to me that I still don’t want to think about but, okay, that he was checking out my prostate made sense. Which, as an aside of my own, had me wondering about some shit because I’d had my yearly physical not too long after that damned procedure and when my doctor was about to give me the finger, I asked him to tell me if he thought that my prostate was “kinda big” and as the urologist mentioned (and like he was telling me what time it was) and my doctor said, “It feels okay to me.”

I busted a nut… and there’s no nut to be cleaned up. I am trying to get a grip on myself and not go into panic mode because there must be a reason for this but other than having that procedure done, nothing had changed except… Flomax. Could that have caused some… problems? I drifted off to sleep rather fitfully because this really bothered me which made me vow to figure out what was going on. Here’s the kicker: I woke up the next day and… my dick was stuck to my underwear and I had a rather impressive cum stain in my underwear and what the fuck?

I get my shit back together and go hunting for the prescribing information for Flomax and read that one of the side effects is something called retrograde ejaculation and I see this and, well, I know what it means but I don’t know what it means but I didn’t have to look it up because the prescribing information was nice enough to tell me what it was and, um, it’s ejaculating and the, ah, results winding up in my bladder or, in this situation, “showing up later” and as in oozing out after all that nice pumping was over and done with. I was… relieved and not so much. I could have mentioned this to my doctor who would have sent me right back to that asshole urologist and I definitely did not want to hear anything this motherfucker had to say and he would have very likely wanted to find out if, in fact, my cum was going into my bladder or whatever the fuck was going on.

The test is actually easy. I masturbate then pee in a cup and my urine is tested to see if there’s sperm in it and, okay, I’m sure that asshole would find a way to make such a simple thing a veritable nightmare for me but what I didn’t see is how to… correct this, um, misdirection – but feeling “assured” that experiencing this isn’t something that’s a problem or nothing gets harmed when I ejaculate other than my very male ego. I just had to make sure than when I masturbate – and, um, something does come out, but I just literally have to milk myself to get all of it out… otherwise, I’m changing underwear a little later. It’s not affected my ability to get (and keep) and erection and I do cum and it feels the way it always does which, um, yeah, since the stroke, that gets seriously interesting and intense but, yeah. This. Like I don’t have enough shit going on with me.

I could stop taking the Flomax but, according to the prescribing information, it may or may not do anything about this retrograde ejaculation thing. Part of me wants to stop taking it and there’s that part of me that knows that my nephrologist said that, well, peeing is good and that it is important for me to be able to completely empty my bladder and my poor kidneys will thank me for this. It’s just… weird to cum and knowing that there’s still more hanging out. On the one hand, ya mon – the well has not dried up and as I had feared it had! On the other… shit. At best, it’s annoying and more so when there have been moments when I’ve shot my load and think I’ve gotten it all out and my underwear tells a different story. It’s… kinda embarrassing and I know that there’s no reason to be embarrassed since I also know that I’m not too old to have wet dreams and I do have them at times so this… retrograde behavior, in an odd way, isn’t all that different.

It’s like after sex or masturbating, I cum… then I have a bit of a wet dream later. It wants to fuck with my head and I’m determined to not let it fuck with my head and more so when there’s probably nothing to be done for it – as far as I know. I could make an appointment with the urologist to get some more definitive information about this and I’d be good with going… as long as I don’t get the one who made my life a living hell and I know that since I’ve seen him before, it makes all the sense in the world to see him again.

Damn it all to hell. What’s making this fuck with me even more is me giving some very serious consideration to undergo the procedure that will remove the cysts from my kidneys… and that’s a job for a urologist and take a guess which in-network urologist I will probably find myself talking to about this? I guess I’ll find out how patient friendly this practice is when I tell them that I don’t want to see the doctor I saw the last time I was there; I really don’t want to know that he’s in the building and it’s kinda fucking with me because I don’t know how I’m going to feel or react if I happen to see him… or having to give into the very logical thing of dealing with him because he’s already familiar with what’s going on with me.

Fuck. I know that I’m going to do whatever I have to do in this but I find it curious to have been so… traumatized by this one particular doctor and knowing that I really, really do not like him and I mean I’d be happy to put him in the hospital because I seriously do not like him. I can’t even remember the last time I felt this way about anyone and it’s kinda bothersome because I trust my other three doctors and I very much like them… but this guy. I know that if I wind up with him, I’m gonna have to behave myself and quell the fears – and a couple of nightmares I’ve had – about “going under the knife” with him again, like, coming out of the anesthesia and being told that things were so bad in there that he had to remove a kidney. Which I know is a possibility because the research I’ve done with both the Mayo and Cleveland clinics say that it’s a possibility…

But I don’t know how I feel about him deciding that taking my kidney out is the thing to be done. I got some shit to deal with because he was the one who prescribed the Flomax that’s given me retrograde ejaculation and he might be the son-of-a-bitch that’ll first decide if I’m a candidate for the procedure and he’s the one who’s going to do it. And… it scares me. Okay, I’m not really scared but I am seriously concerned given that he put me through some shit that I wouldn’t wish on my worst enemy because he thought and was sure that I had bladder cancer and was kinda, “Oh, well – sorry about that!” to find out that I was right when I said that I didn’t have bladder cancer.

I gotta get past this and I will but… shit. I have a lot of questions about this procedure that a urologist can answer… and it makes me cringe to think about how he may or may not answer them to my satisfaction and it becomes a bit of a Catch-22 because I can request to be seen by another doctor in the practice but this asshole already knows me.

Damn it. I’m just venting. But, damn just the same. Whichever doctor I wind up seeing, we’re gonna have a long talk about this retrograde ejaculation thing, too.

 

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: An Update

Had my yearly visit with my nephrologist yesterday and he’s happy that I remain stable and that I’m showing no other symptoms other than my bloated belly and lower back pain.

He did mention that he’s been following new treatments and medicines that could help people like me and told me about a new procedure where, using a laparoscope, a urologist can remove the cysts and in a way that they won’t come back… and was that something I might be interested in? He also mentioned that unless the bloating is really causing me problems, i.e., a lot of pain, a urologist might not recommend that I have this done.

I’m on the fence about it and I have six months to think about this before I go back to him so we can talk about this and, I guess, he’ll tell me what else he’s learned about this. He mentioned “urologist” and I had two thoughts: The first was about the urologist who put me through some shit that I would wish on my worst enemy because he was sure I had bladder cancer and because he’s the in-network urologist, yeah, I’m not a fan of this guy and I’m not sure if I want him fucking around with my kidneys, which brought me to my second thought of why my nephrologist wouldn’t be the one to do this and the bad part is that I didn’t have this second thought until I was on my way to take care of an errand but that’s okay – I can use his patient portal to ask him if I really want to know and, right now, I don’t really want to know.

I got on the scale and weighed in at 204. My normal weight is usually around 178 or so but I had to go back to taking Lyrica for the pain left over from the stroke and one of the side effects of the drug is weight gain. The nurse who weighed me blinked at what the scale told her and said that I didn’t look like I weighed that much and while my lady teased me about my belly, before this kidney problem got to where it is, I weighed as much as 235 pounds but to look at me, you couldn’t see where the weight was and I never figured out where it is.

My nephrologist seemed to be concerned about this since, when I saw him last year, I weighed 177 pounds – until I told him about the Lyrica and he just nodded and said, “Yeah, it’ll do that…” and jotted something down on my chart. He did his usual poke and prod and I had a funny moment when he wanted to poke and prod me and undid the fasteners on my “Farmer John” bib overalls for me which I thought was interesting since in the times I’ve seen him before, he’s waited for me to do whatever I had to do to expose my belly.

The bisexual in me had fun with that since it’s been a while since a man chose to start to undress me…

The sobering thought is that there’s no good ending to having this disease other than the chance that it won’t get any worse than it already is. I think about this new procedure he mentioned and, urologists aside, I wonder what removing the cysts does toward improving kidney function but that’s a question I’ll remember to ask him when I see him again. My initial thoughts are about wanting to endure any surgical discomfort to remove the cysts which, again and if nothing else, will get rid of this “beer belly” but if doing so has a chance to worsen the condition, eh, I dunno if it would be worth it.

I’m saying this now and with the awareness that months from now, I could be saying something different. I woke up because I was dreaming about being “traumatized” by my urologist and him doing this procedure on me while I was wide awake and not even numbed. I realized that of all the surgical procedures I’ve had, having this dude fucking around in my bladder and having to find out what it’s like to pass blood clots through my dick still bothers the shit out of me.

I have six months to think about this and I will think about it and will ask a slew of questions about the actual details of the procedure and other important stuff. I’ll let you know how that conversation goes!