Stuff circa January 12, 2011

Dating. Noting to add here. The topic enters my mind every day. I thwarts any potential enthusiasm. I could not even string together three words to a woman I might be interested in merely beginning a conversation with. I wonder if 35 was a strong magnet that accelerator my descent into myself to the point where I will soon fit the conventional wisdom’s definition of the loner. I have a very honest, blunt, occasionally humorus OKCupid.com profile that should appeal to someone. Fair enough, it does, on occasion. Women pushing forty with kids and women who selectively read my profile will tend to thing I could be someone fascinating for them.

Housekeeping. I have not neat back from them this week. I left a voicemail today and a website message tonight. I stressed that my parents were visiting next week, and that I was having surgery, and that it would be so fantastic if I had strikingly clean home to present for the first time, almost ever. Perhaps they’re not too excited about taking on the screwed-up-single-guy client who had the nerve to ask if his dishes could be done even though that’s not on the official price list. Do they realize what heroes they might be too me if they can add some sparkle to my cat-urine-themed pad? If I don’t here back from them, I don’t think I’ll have it in me to start a new search for immediate housekeeping help. Mom, Dad, and Stepmother will see a grotesque abode, and my recuperation will be complicated by constant anxiety. Should I get the cleaning service after all, the remaining clutter will still prompt judgement that I want no expression of.

Dialysis. Dialysis is so hard. It never gets easier. Working full-time on a new job where you are expected to tackle important tasks and keep you dialysis schedule…this is hard. This is draining. This is a purgatory. My life won’t get anywhere as long as I’m going to dialysis. This is just truth. There’s no way around this reality. It doesn’t help matters when I leak blood after being taped up. It doesn’t help matters when the techs around at 7:00 spend their time bashing the other techs and the management It leaves me feeling that, any day now, I’m going to be leaving in a body bag.

WorkI’ve got a 1-on-1 with my manager tomorrow, the first since shortly after I began this position. I’m nervous. I have no idea what he thinks of the job I am doing or what he expects me to be doing. I am too afraid of saying the wrong thing to press these issues. I don’t want this cloud of awkwardness hanging over my job. But I don’t want to rock the boat. I need the job.

Metablogging I’ve made a small effort to write more about my health over the last couple of weeks. I have done this in part because I will be a session panelist at a conference this Saturday. I shall say more tomorrow or Friday…or after the fact. I was invited to this conference because of this blog, and so I could discuss what it’s like to blog about my health condition. I doubt I will spend much time preparing, and I don’t even know how I would go about preparing. I plan just to be relaxed and blunt with my answers when the time comes. It will either be an hour of enlightenment or pained awkwardness, but then it will be done.

Nephrectomy countdown

me herman 2011.01.11 bwI’ll have surgery next Wednesday at Duke. I am expected to remain at Duke until Friday or Saturday. The surgeon has every intention of sucking out that massive abomination of a kidney through a small hole a tad larger than my belly-button. The procedure should take 4-5 hours; I’ll be under general anesthesia.

Having had my pre-op appointment today, the reality is now setting in far more weightily than it had been.

Sitting in a chair. Taking a drive. Bending down to do laundry. Reaching up to put laundry away. Or doing dishes. Or scooping the litter box. And many more activities…they all require generous use of abdominal muscles, and I am quite hindered when my massive left kidney gets in the way. I am not exaggerating to state that I have probably quit on myself a good 20,000 times on takes mundane and challenging when my kidney ached, and it seemed best to retreat and not complete the task.

I was close to joining the track team in 10th or 11th grade. A sympathetic Mr. Y was just going to let me on, to at least practice even if I didn’t have a role, because this would help my self-esteem and help my overall fitness. But, one day, I just flipped and decided it was too demanding given the pain my kidney caused. And that was that.

Here’s one instance (out of many) for which, despite quality therapy, I am unable to forgive myself for being a quiter. I despise myself for having walked away on something that may not have been the answer to everything but could have provided a rewarding experience.

The summer after my freshman year of college, I worked for a month in the men’s clothing department at Macy’s in Edison, New Jersey. I hated, hated, hated this job. But objectively, it was not a terrible. I just hating standing for long periods of time; my kidneys probably hated that. And the monotony kicked up swirls of anxiety and depression that made it excrutiating to get through the day. So one day, approaching the Menlo Park Mall on Route 1 North, I made a U-Turn and drove home. And I later called in sick, citing kidney issues, and I quit soon after. To make a long story short, I wound up spending the rest of that summer in a mental health program that did very little good, but what choice did I have? I had sabotaged a decent summer job. It should be said that had I worked that entire summer, it’s like my financial situation would have been impoved to the point that sophomore-year credit cards may not have been needed to the extent that they were, and my entire financial future and related decisions could have gone differently.

I could dig up dozens of others of examples of how my PKD got the way of something important–and I left it.

I have been told upon occasion that I am attractive. I’ve gotten this from women. I’ve gotten this from gay men who were either flirting or just trying to make me feel better. I have never been able to accept any of these judgments. Over the years, there have been the issues of my detestation of my moles, my stockiness, my lack of athleticism, and, especially in recent year, my protruding gut, home to my two overgrown kidneys. Again, I am not sure that being lopsided by continuing to carry a huge kidney is going to solve the latter problem. But it’s an enormous deal that the left one is coming out.

Stuff circa January 8, 2011

Dating I went on a date a few days ago, and it was heartbreaking. It was a stark reminder of why I rarely ever go on a date. I battled for ninety minutes to be funny, engaging, and charming. She often seemed genuinely interested in me. I rattled off feelings about being on dialysis and transplant lists that I hadn’t shared with anyone. I, briefly, had the sense that it was ok that I hadn’t been to other countries, held an advanced degree, read five books a month, or looked like every healthy bike-riding guy who comes into Whole Foods. There were five or ten minutes when I had self-confidence. But later that night, I received the “I don’t think we’re a match” email. Rather than pick myself up, dust myself off, do whatever one is supposed to go to keep functioning, I took the rejection as a gravely-wounding piercing. I did not react as such by choice. This humiliating numbness is a physiological reaction I’ve been getting since I was in grade school. Allow myself a moment of being open to something amazing, and I will inevitably experience crushing agony. This never changes. At 35 and stuck on dialysis, the cumulative weight of all of these rejections is indescribable. I do not know anyone who gets how badly this feels.

Housekeeping I had been so excited that I was finally, after years of thinking about it, going to get a housekeeping service to come and clean up my place. I had been reluctant, in part, for so many years, because I feared that such a service would be unable to do a whole lot without me first doing a hefty bit of pre-cleaning. How can they clean the floors if I don’t remove the clutter? How can they clean the kitchen if I don’t do the dishes? But the same fatigue and paralysis that prevent me from going through a stack of junk prevents me from vacuuming the floor. If I can do the first part, why do I need to hire someone for the second? But I reasoned to myself that there must be services to clean the homes of those who pass away or those who simply live in extreme filth and can’t help themselves at all. My place isn’t nearly that bad. These services must know how to help me. But my original fears were realized. When a rep came by to discuss my options, I was told that, no, the cleaners would not throw anything away. They would not do my dishes. They would not pick up piles of stuff. They’d do cleaning and dusting of areas that were already clear, thus validating my theory that only people who have reasonably clean homes actually hire cleaning services in the first place. I still plan to use the service, but my enthusiasm has most deflated. The phrase “putting lipstick on a pig” comes to mind. I’m going to pay them a couple hundred bucks to make my baseboards shiny. The place will still look like a dump.

Work Let’s assume no one from work is reading this. I am overwhelmed by my new job everyday. No one has told me I am failing to meet expectations. No one has told me I am doing anything wrong. But I just assume that I am. My brain is not up for following phone conversations with a dozen people scattered across the world. My brain wants to engage is problem-solving off in its own space and does not want to be interrupted by endless meetings and endless exercises in documenting what I haven’t had the chance to even do yet. And then there’s the small matter of, everyday, wondering how I will put in a solid effort alongside my thrice-weekly dialysis sessions. My body and mind are exhausted, and there seems to way for them to rebound as long as I rely on a machine to filter out toxins from my body. Sounds like a bad time to have changed jobs! Except my last job was soul-sucking; I needed to move on. I don’t regret taking the new job. I regret that I don’t have 2-3 years of savings so I can just do what most dialysis patients do, which is to go on disability.

Dialysis I had figured out what made me so horribly uncomfortable at dialysis, but I never shared the resolution. First, I didn’t want to dwell on how the medical establishment had failed me. Second, dialysis did not turn into a picnic, and it just didn’t seem useful to comment on how dialysis had become just a little less intolerable. At it’s best, I’ll have competent techs and a quiet, pain-free treatment. But, at it’s best, it’s four hours out of the heart of my day that will cause my body to feel uneven for another couple of hours and fail to give me any noticeable boost in energy or affect.

Metablogging I post the croutons as a reminder to myself of a part of myself that I hope still exists, even if it’s easy to cast it off as foolish and naive–the young, unapologetic romantic. Or something like that. I still mourn Toastie Radio, my attempt in the early part of the 2000s to share the music I liked with the world, which at some points, like then there’d be 40-50 concurrent global listeners, came close to being gratifying. In the end, it was a failure, a colossal waste of time and money…and the currency of optimism, of which I’ve always been short-changed.

I posted an unflattering shot of my gut because I wanted to document the time prior to my nephrectomy surgery. I have profile shots that make that distended abdomen far more grotesque. Then again, those shots may be from 15-20 pounds ago. It’s unfortunate that I can be 15-20 pounds down from my heaviest weight and not feel the slightest bit of accomplishment. I don’t feel anything, because my body is weak and completely lacks agility. I’m a sloth. And I’m clearly not having any success on the dating circuit.

I post about politics as a reminder that I’m thinking about these things. I regret that I can’t write intelligently about these issues. It’s much simpler to just throw up a link to someone who had written something intelligent.

When I write a long post like this were I’m stressing about the consequences of my writing, I must put to the back of my mind the thought of who may be reading this. Family members read this. People solely interested in kidney disease and dialysis read this. Former coworkers read this. (I hope no current coworkers read this). If I worry about how I’m coming across, then I’m writing a different blog. Perhaps one day I’ll have a blog dedicated to a particular topic, and I’ll write it in a professional matter, and it won’t be self-absorbed.

For now, above all else, this blog is a coping mechanism for everything. I am not always explicit about how a given post is meant to be therapeutic. Ideally, I’d be writing more. I’d be writing just like this. Granted, it’s 3:52AM, and I don’t strive to be up at this hour on a regular basis. But the benefit of 3:52AM is the lack of inhibition. I’m just writing what comes to mind, and I’m going to hit the Publish button, and this will be up there in the morning. I can go back to sleep with a far-clearer head.

Hidden perils of dialysis! Big surprise…

I’m not even going to watch this. So how bad is it? My chances of leaving treatment in a body-bag tomorrow are better than my winning MegaMillions, aren’t they?

This is why I need a kidney, like asap. I’ll be sending out a desperate plea sometime soon. There are all sorts of annoying holiday-time news stories about kidney donations. Like the MegaMillions, I’ve got to be in it to win it, so if I don’t beg for a kidney, I’m not going to get one. Ugh…I really don’t look forward to doing that…

Visit msnbc.com for breaking news, world news, and news about the economy

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.