STFU

I could tolerate dialysis a lot better if everyone would just STFU. Staff–go find a break room if you want to socialize. Or socialize with sign language.

Turn off the TVs that no one is watching. How hard would that be? No more patient in that chair? Turn the effing television off. I can hear the ones that are 25 feet away. It’s maddening.

These are issues of basic decency in patient care. They were issues when I started off on dialysis 18 months ago. Management was cold to such concerns then. I’m sure they’d seem laughable if I raised them now.

I need to get work done while I’m here. I must get work done while I’m here. Even if I didn’t, I’d want to relax. I’d want to sleep. I’d want to read. Frankly, it doesn’t matter what I want to do here. I just want it quiet. How hard is that?

That’s one thing Duke Hospital does right. You wind up in the hospital and have to have dialysis in their dialysis unit on the seventh floor, and you’re going to get a quiet, professional environment.

Not here. NEVER here. I hesitate to mention the name DaVita, because, from what I’ve gathered, a Fresinius unit is not a pleasant place to have dialysis, either.

Dialysis units are places where diseases slabs of tissue are hooked up to machines. Insurance and Medicare pay lots of money so these slabs of tissues can be kept alive. But it would eat into DaVita’s profits if comfort and mental well-being were taken into account.

I am trying to make this work. For the most part, I show up three times a week and stay for my whole treatment.

But it never gets any better. It always sucks. And it infests my entire life. Not a day goes by that I’m not thinking about it. It’s either a dialysis day, or the next day is a dialysis day, or it’s Saturday, and I put enormous pressure on myself to not vegetate all day while I have a break.

Physically, I feel ok at the moment. I should be trying to get work done. But concentrating here is nearly impossible.

And, I swear, I’m gonna pop the next person, tech or nurse or doctor or anyone, who asks, “Have you considered home dialysis?”

I won’t be doing any form of home dialysis. I am stuck right here indefinitely.

What’s worse than the experience of being here right now is that I know I am failing badly in attempts to figuring out anything else that defines who I am at this point in time. I’m not doing anything else of note. I have absolutely nothing interesting to say about my job. And I don’t do anything else. I don’t make anything, build anything, play anything, or help anyone else do anything. I make myself get out of bed each day so that I can go to work, go to dialysis, tend to my pets’ basic needs, and tend to my own basic needs. When I’m not doing one of those things, I’m exhausted. Even if I had anything else to do, I’d be too tired to do it.

I went off on a tangent there. I’m done.

No comments.

Cats in the bedroom

Here’s some more photographic evidence of how hard it will be to evict the pets from the bedroom. Well, I’m posting them more for the novelty of the similar themes of the photos taken 13½ years part.

Kitten. Must. Die.
October 1997

Z and A in bed 2011.02.12
February 2011

How to lose 11 pounds in three weeks

2011.02.12 MeI’m still awaiting on the actual photos of my removed polycystic kidney. But I have had enough weigh-ins at dialysis now to guess that my kidney had weighed 8-10 pounds. I’m 11 pounds lighter than I was back on January 18. I’ll attribute the other pound or two to a decreased appetite post-surgery. (Before surgery, I was about 10 pounds lighter than I had been a year earlier and about 20 pounds less than my peak weight.)

I’m posting a photo of myself because I genuinely feel like I look better now than what I’ve seen the mirror over the past couple of years. Comments off, because I’m not looking for validation. This instance of self-validation is fragile enough. (And peritoneal dialysis is supposed to put weight on you, what with the peritoneum carrying around an extra couple liters of sugar water…)

Peritoneal Dialysis: The hurdle

In order to go peritoneal dialysis AND not introduce a considerable risk of infection, I need to close off the bedroom from the pets. They wouldn’t just have to be out overnight while I did my transfers with the machine. The bedroom would be off-limits 24/7. And I’d need to be entombed in my bedroom for 9 hours a night. See, the door is never closed to my bedroom. Close that door, and I feel cut off.

I’ve got some time to mull this over. I’ll see if I can make the bedroom-access restriction gradual for the pets.

Last night, they were banished from around 11pm until 5am.

My one model for implementing something similar was when, back in 2002 or so, I stopped letting the cats go outside, cold turkey. This seems like a horrible restriction for cats, mostly Aremid, who loved the outdoors. But they adjusted. I read that cats adjust to however the scope of their domain changes. Even if their domain radically shrinks, they compensate by focusing on whatever domain is available to them.

Mostly, it’s having Aremid right next to me for THOUSANDS of nights that is so difficult to get past.

Aremid as Healer

Healer
(February 2008)
Healer II
(March 2008)

Healer 4
(April 2008)
Healer V
(October 2008)
aremid_healer_jan_2009
(January 2009)

Aremid, Healer, yet again
(January 2011)

Undisclosed Location

Undisclosed Location 2011.02.04
While Anderson Cooper reports from an undisclosed location so that Egyptians don’t beat him up again, I blog from an undisclosed location because I needed to get away from home. It is difficult to explain why I couldn’t get sufficient rest at home. I suppose I tried to explain the other day. I suppose there’s no need to be so mysterious. I’m at a local hotel. It’s not a very nice hotel. But it’s free of distractions, other than the distraction of my own mind, which simply doesn’t know how to slow down and heal.

I present the mug above because it’s the reality of what I deal with. I could shave, and that will improve things a tad, and maybe I can get a haircut. But only plastic surgery and an unethical dermatologist can fix the rest.

No, seriously, I’m not accepting arguments on this. (Blog comments are off; FB comments I can’t stop. But I’m writing this as a monologue. I’m really not fishing for feedback). I look at my image, and I think, “Aw, shit, this is hopeless.”

There are lots of thoughts swimming around my head related to what comes next. I barely had started my new job before I had this surgery. I’ll presumably be back there within a couple of weeks, and life will mainly consist of juggling that and dialysis. And there will still be several significant voids to fill.

One move I’ve made that may result in some fulfillment has been the purchase of an SLR camera. I’ve thought about taking photography seriously for a long time. In order to really do that, I’ve needed to invest in a better photographic instrument. It’s caused me some anxiety to take the plunge on the purchase. It falls into a broad category of “things I should really consider getting” that include a fence for my dog, attic insulation, a bike, and a new mattress. It’s taken me several days to even open the box. I’ve done that now, and the result is in the super-graphic image above. My goal with this hobby is actually to capture some of the beauty in this world. I will work my way up.

It may seem ironic that I leave my house for rest, but I’m still up at 2:03am. I’ll be asleep soon.

I’ve got a follow-up appointment with my surgeon tomorrow morning. I treat it as a necessary exercise and not a helpful milestone in my recovery. I imagine I’ll first meet with the interns I came to resent. They’ll comment on how well my incisions have healed. They will have no way of evaluating the internal damage and just tell me how this will all take a little more time. And then a few hours later, I’ll go to dialysis, where I’ll just hope, as always, to leave with most of my blood intact and limited episodes of hot flashes and cold sweats. (I think I need to start researching where the post-dialysis hot flashes come from, since no one else will). At least I will follow dialysis by going home to a location that will not have a dog desperate for a walk and cats desperate for food. Whatever I choose to make/bring back for dinner can make a mess that I don’t need to care about. If I sweat through all of my cheaps and covers, I don’t have to care about living with the same bedding the next day.

Perhaps tomorrow I will open two weeks of mail that have piled up. My dear Aunt J sent me a card, and she deserves a reply, but I haven’t gone through my mail yet. Too stressful to do that at home. I will do that here, in my undisclosed location.


An addendum to tonight’s raw, comment-discouraging blog post:

Congratulations!
You have successfully renewed the domain toastie.st for 2 year(s).
The new expire date is 2013-02-06.

I did contemplate not re-upping. There are lots of good reasons why this site is a bad idea for my time and my internet persona. But I couldn’t come up with a satisfactory alternate plan. I saved something like ten euros by opting for two years instead of one. So it will be another two years before I contemplate the purpose and value of this enterprise again.

Nephrectomy and aftermath summary

image

My blog continues to be a secondary source of providing updates about my surgery and recovery. I’ve been updating Facebook, where I can air raw thoughts that may not be best as part of the public record. Even on there, I’ve been skipping lots of details about my frustration, as that requires a level of energy that I just haven’t had. Practically speaking, I have rarely felt comfortable enough to sit up with my laptop. I do, for the time being. I’m receiving dialysis on the 7th floor, and the above photo is from the present.

Wednesday, 1/19/11, 1:00pm – Surgery begins.

Roughly 5:00pm – Surgery ends.

5-10pm – A blur. I think I’m in my room by then.

11:30pm – I am supposed to receive a dialysis treatment because my potassium is very high. Someone will do this in my room.

Thursday, 1/20/11, 2-6am – Dialysis nightmare. A machine is brought into my room, and a tech sticks. She moves slowly and awkwardly. Her sticking is terrible, resulting in pain that is not typical with dialysis. Arm and chest pain are severe enough to trigger cardiac concerns and subsequent heart tests. I hate a nitro pill, and my BP hits 70/38 at one point. After the tech leaves, I explain the nurse everything that was awful about that experience. I doubt she writes up anything or shares it with anyone. I explain the whole story to a patient advocate later that day; I think that is ignored, too.

6am-8:30am – I desperately want sleep but get none.

8am – My remaining right kidney does not seem to be producing urine. Asshole intern says “at least you’re on dialysis.”

8:30am-12:30pm – They want me to sit up. I forget about wanting to sleep and migrate to the big chair in my room. I even get on my laptop, even though all of this is extremely painful.

12:30pm – They really want me to take a walk, so I do a lap around the floor.

1-10:30pm – Steady stream of visitors (some quite welcome, others not–interns, etc.) make getting rest a challenge while I deal with a steady stream of pain.

10:30pm-6am – Some mostly-uninterrupted sleep.

Friday, January 21, 8am – Optimistic I’ll be out by evening.

11:21am – Very annoyed by staff: Most of the attendings, technicicians, surgeons, and nurses who have checked in with me have had no clue what damage was done internally. And when I tell them, they ignore me. My surgeon is great..technically and personally. Everyone else should be embarrassed.

2pm – Finally, a “real” doctor visits, a guy who seems to have decades of experience with pain experience. He listens to me, understands what I’m dealing with, but I don’t remember his name or see him again. No one on the “team” seems to know if his involvement.

10:30pm-8am – More mostly-uninterrupted sleep.

Saturday, January 22, 9am – Still on liquids only, as I have not peed at all yet since Wednesday’s surgery.

9:15am – I have peed, and I get waffles.

11:45am – I haven’t had a bowel movement in three days, and this may prevent me from being able to leave.

1:00pm – Have my BM.

2:00pm – Get greenlight to go home.

2-6m – Delays and more delays. Contradictions over what meds I should take. Waiting on approvals from docs I had never met.

6:00pm – I leave

Present-time – My laptop battery is about to die, so I’ll stop there for now. Will continue the summary later. The bottom-line is that I’m back in the hospital and don’t know if I’ll get to leave today or not until tomorrow.

[ Part 2 | Part 3 ]

Udderly intimidated

Patient blogging sites are routine at major cancer centers now, and friends and family can follow their course, thoughts, and feelings through their blogs. Would blogging benefit in other chronic illnesses? And does blogging provide therapeutic benefits to the patient?

These questions will be discussed at a session at the ScienceOnline2011 conference to be held in RTP this weekend.

And, a couple of months ago, pediatric nephrologist Dr. Pascale H. Lane invited me to participate in this session. I responded that I’d love to participate. I saw no downside. I get to get out on a Saturday afternoon. And I get to go to a sciency thing where everyone will be ten-times smarter and more accomplished than I am! No, seriously, it’s pretty intimidating. I live in a neighborhood filled with Ph.D. candidates who probably “do talks” at conferences all the time. The closest I come to that is the 90-second WebEx demo I did today at work showing how I had put in a URL that pops up a web page.

The whole conference seems appealing, and while I’d be able to sit in on anything and go to dinners and other events by virtue of my participation, I’ve got too much going on right now to have planned any attendance other than by 2pm session on Saturday.

I’m stressing because I have yet to give serious, deep thought to what I’ll have to say. I don’t know how these things work. I’m not an academic. All I know of such events is what I’ve caught on C-SPAN. There should be pitchers of water on the dais. There will be a dais, right?

As of tonight, I have new reason to be nervous. I have just learned from looking at the ScienceOnline program that my panel will include Joe and Terry Graedon of public radio’s The People Pharmacy! Now I’m super-intimidated!

(The blog post’s title is a reference to a product that the Graedon’s frequently tout. I was making a pun, darn it.)

(Man, if the Graedon’s read this, they’re gonna hate me. I shouldn’t mock utter cream until I’ve tried it.)

Oh, and if I had been on-the-ball, I’d have mentioned that Durham resident’s usually don’t appreciate being called “locals of Raleigh-Durham”. But because I have lived in Raleigh, I will let this slide.

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.