Bad kidney

bad kidney good kidney
Above is my latest poor artistic rendering of one of my polycystic kidneys and a normal kidney.

I am cranky tonight because my left kidney will not stop aching. Stronger painkillers do I need.

This kidney has been a pain in my side…and my back…and my gut…for a good two decades now.

The good news is that the left kidney is coming out in less than a month. I’ll be having surgery to have it removed, a nephrectomy. The talented surgeon doing this thinks he can do this laproscopically, though it seem like it will have to be some magic trick. He said he can use various instruments to shrink it to pull it out.

So this is the good news. In the meantime, this kidney seems to be wanting to remind me how much discomfort it can cause.

This has gotten me in a pretty rotten mood, since, as I rambled earlier, I’m off from work now for the rest of the year. I should be relaxing.

Just venting….

When the only one who’s got your back is you

I told my nephrologist that I didn’t think anyone at dialysis really gave a damn about the problems I’ve been having at treatment, thought not exactly in those words. He responded that he takes issue with this, that they’ve been trying things that just haven’t worked.

Would it really matter if I told him about the charge nurse who laughs at me when I bring up an idea or observation?

Would it really matter if I told him how his colleague shows his concern by turning his back on patients in the middle of conversations?

Would it really matter if I told him that, when I sink into my hellish 60-90 minutes of treatment that no one comes around to try to see what has happened to my body that wasn’t happening early?

What does he want? Thanks for keeping me alive, doc. Though my life is slipping away from me day after day, month after month, I’m still breathing, and that’s something.

I’m sorry if I have higher expectations for my treatment than you do.

Dialysis puzzle

Two hours into my three-hour dialysis treatment, I am not experiencing the profuse sweating and freezing that occur just about every time I am here. There have been a couple of exceptions, and there have been commonalities to these dialysis treatments that I have tolerated.

1. It’s not third-shift. Coming in earlier in the day, when I have come from having been sleeping at home as opposed to from having been at work, has seemed to make a big difference. Due to the holiday, I came in at 11 this morning.

2. I was stuck by S, who is rarely the tech who puts me on the machine but, when she is, it’s accompanied by a much smoother treatment. It’s difficult to imagine that she sets up the machine differently in such a way that NO ONE ELSE does that makes for a better treatment, or that she puts the needles in my access in such a dramatically different way.

3. I’m wearing a hat. Just a ball cap. I’m pretty sure I’ve worn one before, and it hasn’t made a difference. It may be more relevant that I didn’t shower before I came here. Maybe my there’s something about the soap or shampoo I use, and the dialysate reacts with them?

Now, if going in at 3:30 in the afternoon after a workday is resulting in bad treatment, just going in first shift is not as simple as it seems.

I don’t know if it will be more problematic work-wise to arrive late as opposed to leaving earlier.

I don’t know if I’ll feel well enough following an early-morning treatment to have a productive day at work.

It would certainly be nice if the nephrologists actually knew precisely why I feel better in these rare instances.

Blunt

My kidney is killing me right now. Something must have happened with one of the cysts. I probably have an infection, for all I know, which would explain why I’ve felt especially sick for the past week-and-a-half.

Are you gonna see the doctor?

Since no one has specifically asked me this, I’m going to answer this in the bluntest of terms.

Which doctor? My nephrologist? The dialysis doctors? And what are they going to? Maybe, at this point, they’ll check blood and urine to see if there’s the possibility of an infection.

Whether there is OR NOT, they’ll probably be inclined to suggest antibiotics. But there’s usually not an infection. So then I take antibiotics that are probably doing more harm in the long run since I don’t need them.

And my main concern is THE PAIN. What to do about that? The only medications that will actually help THIS level of pain will make it impossible for me to go to work.

Your health is more important.

No, my keeping a job is more important, because, if I have no job, I have no income, and I become a full-time dialysis patient.

But if you don’t get treatment…

Yes, I’ll probably go to my primary care NP tomorrow, because she’ll actually talk to me for more than 60 seconds. But, my point is, it’s probably NOT an infection, and, therefore, there is NOTHING anyone can do about it.

When it all comes down to it, for 20 years, I’ve had this big-ass kidney that has been hurting me to varying degrees, and there has been NOTHING that I can do about it. I’ll be on a new job, and there’s nothing I can do about it. I’ll be on my prom date, and there’s nothing I can do about it. I’ll be trying to study for exams, and there’s nothing I can do about it.

And it tends to put me in a really shitty mood.

Everyone thinks, oh, there’s David–he’s always so down and depressed. He should talk to someone. Etc.

There is not an anti-depressant on the planet that will help me. I need to be rid of this pain. I really tried to explain this to nephrologists and mental health professionals over the years. I haven’t received the help I’ve sought and, yeah, it has pissed me off that I have to deal with this.

I am not Mohammad Ali or Michael J. Fox or, quick, who had cancer and beat it? I’m a terrible spokesperson for disease, but I DON’T cope with it. I DON’T thrive in spite of it. Oh, oh, I’ve got it…


Patti LaBelle has diabetes…but it doesn’t have her!

I’ve got this watermelon-sized kidney, and IT’S GOT ME! It’s got me, and it’s had me…for maybe 6,000 or 7,000 days… (I’ve got two, and they’re both massive, but the left one has given me 90% of the pain.)

But you’re gonna have one removed, right?

I might very well have gotten it taken out by now, actually, if I hadn’t taken the new job. Or, if HR at the new job been less threatening about sticking to my start date, I’d have negotiated a later one so that I could get this nephrectomy done. I’ve got a surgeon lined up to do it. Unfortunately, I didn’t get in to see him until the end of October.

Now I am waiting to hear back from his office to learn when the earliest I could have this surgery might be. Then there is the matter of informing management at the new job. I have mentioned this, that I will need this surgery. Management is supportive, but it’s certainly not convenient. I’m just ramping up, and should be ready to be a productive member of the team by January…just in time to take a month off?

So you’re gonna wait?

No, I don’t think so…I don’t know…I’m not sure. The one thing that’s really stopping me is the thought that, for all the difference not having this left kidney might make, I might be trading it in for a worse predicament by way of increasing the criticality of dialysis.

Dialysis has been horrible lately. I can go into that again some other time. But it has not been getting any better. I have actually felt better, overall, the weeks I have skipped one day. My kidneys are still making lots of urine. I don’t need fluid removed from me when I have dialysis, unlike 95% of dialysis patients. Once I have a kidney removed, it becomes much less likely that I skip dialysis, and that means tolerating it three time a week no matter what. This is the trade-off I will be making, and, so, it is not a no-brainer to have a kidney removed.

Anyway, that’s my rant for tonight. I did not plan on making such a rant. I was recently recognized as a kidney disease blogger, and I honestly don’t think I provide any useful information to anyone. I only do this because it’s therapeutic, an alternative to having all this frustration just stew inside me.

..

On a personal note, to the individual who recently told me that one’s disease was not as important as the personality of the person who has the disease…you’re not a nice person. I’m just making an informed assumption. I’m probably not a nice person for throwing this in here, since it’s totally off-topic and irrelevant to everyone reading this but you…but you could’ve been so much kinder, and you chose not to be out of some sense of moral superiority. You have my permission to not read anymore of this blog.

Everyone else, this is one of those posts where I shall kindly request no comments. I will assume that someone read this from beginning to end, and that makes me feel better in itself. Thanks.

Dialysis battles

I really start feeling resentful when I have to censor myself so as not to offend. I have some expletives I’d love to unleash right now. I lack the creativity or determination to find suitable synonyms. Alas, I’ll try to be good…

The nephrologist did rounds today. I insisted on having no fluid taken off, not even the 0.6 kg of saline rinse that is always put into my body and always removed. I was adamant that my kidneys are working really, really well at eliminating fluid. Furthermore, I always sweat about 0.5 kg off during treatment, so I did not want the machine pulling off extra fluid that body can take care of naturally.

The doctor told me that 99% of dialysis patients cannot afford to opt out of fluid removal, and that the dialysis staff is not used to this. I tried to calmly respond that this was no excuse for the dialysis staff to not comprehend what I was requesting. I would not let them take off fluid just because they don’t know any better.

One especially obnoxious nurse had previously lectured to me, “You do realize what you’re asking?” This is the same nurse whose “hurry up” routine a while back resulted in me walking out and giving myself a nice alternate afternoon in the Duke Gardens.

A few minutes ago, a tech who wasn’t around for the earlier rounds was alarmed that I was not having fluid taken off. I was and am thoroughly annoyed that I had to explain my situation yet again.

No one here gives any consideration to the fact that I have Polycystic Kidney Disease, that I’m not dying, that I don’t need the machine to pull fluid out of my body, that I need to feel ok during and after treatment because I must work full-time.

There’s a social worker who, in theory, would put forth such consideration, but he has never spoken to me in three months. I don’t know for the life of me what he does here, other than silently follow the doctor around when he does rounds.

The bad news is that having no fluid taken off has not impacted how I feel during treatment whatsoever. Mystery freeze continues. It is NOT chills. It is not “getting cold”. No matter what variations of clothing I wear, no matter whether I use a blanket or not, no matter whether I wear a hat or not, this freeze happens, and it’s barely tolerable.

My creatinine has hit a point of no-return…it’s above 9, so that means I absolutely do need regularly dialysis to filter out waste, even if liquid is still passing through.

The good news is, whereas I started on this shift 3 1/2 months ago getting 3 hours and 45 minutes of dialysis, I now only need 3 hours. This is something.

Dialysis twice every ten days

Due to my recent travels, I have only gone for dialysis two out of the last ten days.

And I feel okay.

I am livid that, after fourteen months, the doctors and staff have not gotten the message that I do not need to have any fluid removed.

I am livid that it doesn’t seem the suffering I experience on dialysis is necessary. I’m not saying that I don’t need to be on dialysis. But I clearly haven’t needed 10-1/2 hours every week (and 24 hours of nocturnal dialysis before that.)

The treatment almost always gives me flu-like symptoms for several hours following treatment, not to mention for one to hours of severe symptoms during the treatment itself.

The treatment is worse than the illness.

And then there’s the staff that couldn’t manage a McDonald’s. They are constantly screwing up the scheduling, giving me a hard time when I come on time and rambling on to me how management has made mistake with their schedule. I’ve recently found that the required visit from a nurse hasn’t happened. It’s hard to get anyone’s attention when something is going wrong.

I don’t trust the people working the floor or running the facility. This has been the case at both facilities.

I don’t trust the doctors who have zero to little interest in the day-to-day operations of the clinics.

I’m sure they do whatever they have to do to keep their certifications. They may not have flat-out killed anyone lately. But everytime I go in there, I do feel like my life is at risk. One mental lapse, and who knows what disasters can occur.

Doctors and dialysis staff suggest, “Have you tried home hemo?”

No, I live by myself, and that’s not about to change

“What about peritoneal?”

I though about it, but how “active” can you really be with a straw sticking out a few inches above your groin?

“Oh, and you have pets anyway…”

Yes, me keeping things sterile would be…well, I’d get an infection every other week.

All evidence suggests that most hemo-dialysis centers sucks. There is no relief.

I’ve found some relief in NOT GOING. But this is not a long-term strategy.

Dialysis Freeze

I used to write frequently about the problems about the frigid conditions at the nocturnal dialysis clinic. I would wake up soaked in a cold sweat and then have to lie there for another half-hour or an hour or more until my treatment was finished. It was one of several reasons why the nocturnal shift was intolerable, and I eventually left.

Make no mistake, other patients and staff believed it was far too cold in that space. The ceiling vents could also be a brutal part of the equation.

Here at the other clinic, the vents have guards hanging below that disperse the air. The room temperature is never especially too cold or too warm.

But my body still has a huge problem with cold. No one has yet to figure out what causes this. As of today, I will officially note that they do not care.

Approximately 90 minutes into my 3½-hour treatment, parts of my body will get cold. Specifically, any part not covered my clothing will being to feel as if an icepack is embedded in my tissue. If I wear shorts, my legs will get cold. If I wear short sleeves, my arms will get cold. I don’t wear a ski-mask, so my face and head always feel cold. I haven’t cut a hole in a long-sleeved shirt yet, so my arm used for access gets cold.

Here’s some purposeful ALL-CAPS action.

I DO NOT HAVE CHILLS.

MY BODY TEMPERATURE IS NOT ABNORMALLY LOW.

THE DIALYSIS FLUID TEMPERATURE IS NOT ABNORMALLY LOW (37° C).

MY BLOOD PRESSURE IS FINE.

I AM NOT HYPOGLYCEMIC.

I DO NOT HAVE AN INFECTION.

AND I AM CERTAINLY NOT IMAGINING THIS.

A couple of the nephrologists have taken this problem half-seriously in the time I’ve been on dialysis. The nephrologist doing rounds this month seemed irritated that I’d bring up something that he doesn’t have an answer for and suggested peritoneal dialysis as the solution to this problem. This is like having a car that makes a horrible noise that the mechanic cannot find the source of and having him tell you to just get a different car.

The internet has been of no help to this point. If anything, it’s just led me to anecdotal suggestions that send me down the wrong path.

I will be using the internet shortly to look for lightweight ski masks, if such things exists.

Life in the hands of dialysis techs

One of the many lousy things about dialysis is that your life really is in the hands of dialysis techs who may or may not care about how they do their job from day to day and minute to minute.

Yesterday, the tech had to remove one of the two needles he had initially stuck me with. While preparing to re-stick me, he had me hold the gauze over the bleeding site. He did not give me a glove. I’m sure my hand did not stay free of bacteria between washing it in the restroom and getting to the dialysis chair. They ALWAYS make sure you have a glove on when you’re holding your access sites post-treatment. Holding the access site pre-treatment should been no different.

This tech is one I usually trust, more so than most of the people there. He was frustrated that he had to redo the sticking. There wasn’t time to object when he said, “Here, can you hold this?” because I would’ve started to bleed otherwise.

At the other clinic, run by the same profit-machine, an older woman nearly died from a blood infection caused by an irresponsible tech. My friend got very ill for the same reason. And, as far as I know, that tech is still working. She’s been written up “countless” times according to one source.

Bottom-line: Regardless of the mandatory posters in the lobby with bunch of phone numbers, there’s no one to report these things to such that anything meaningful will actually be done. My tech, whom I like, cut corners because he knows he can, because others are probably doing far more egregious things all the time.

I don’t let it get to me three times a week, every week, but for-profit dialysis still scares the shit out of me.

Some information on hemodialysis and infections. I am far better off with an AV fistula for access compared to a catheter, but there’s still plenty of risk.