Posts Tagged ‘health’

Serious questions about dialysis

Do dialysis patients tend to be mentally challenged with the cognitive capacities of children?

If so, can they make separate dialysis facilities for these individuals and for fully-functioning adults?

If not, why are dialysis centers run like pre-schools?

Also, am I supposed to share in the center’s elation that my transferring here has been a boon to their blood work statistics?

…

I’ve been on for just a little over an hour. I will start to feel cold, hot, and clammy in 5…4…3…2…

Tags: health
Category dialysis, health, pkd |

August 5 rapid blogging: dialysis

I’ll continue to write relatively little about dialysis, compared to my ongoing tirades about nocturnal dialysis.

I know people would be happy to hear that my new shift is going so much better than the old one. It’s not. It’s going a little bit better. Sleeping at home every night is a big plus. Not starting some of my days cold and sweaty in that place is a big plus. There are a couple of people that I definitely do not miss.

With the new shift, I need to be waking up very early for work; I haven’t quite gotten the hang of that yet. Obviously, I should be getting to bed earlier. On dialysis days, I’ve pretty much exhausted after I leave, so the rest of those days are pretty much shot. Time flies by just as quickly as it did before, which is too quickly.

The hot flashes and cold sweats haven’t gone away. No possible solution on the horizon. Well, I am trying a non-doctor-approved remedy. I’ll let people know if it works. I’ll keep it to myself if it doesn’t. Nothing dangerous. Just tired of nothing and no one helping.

I’ll get my first lab results from the new place tomorrow or Monday, and that’ll give an indication on the efficacy of the new schedule versus nocturnal. I’d be surprised if my numbers didn’t take a hit.

Meanwhile, I am still waiting for a second set of appointments with Carolinas Medical Center in Charlotte to get on their transplant list. I went for orientation in March and a first set of appointments in early July. This is being dragged out far longer than I anticipated, and it’s very disappointing. I guess I’ll need to put in another call to them to see what the heck the problem is scheduling me in.

897 days on the transplant list. Going by averages, I still have another 1476 days to go.

Tags: health, transplant
Category dialysis, health, pkd |

If dialysis doesn’t suck

If dialysis doesn’t suck, it probably means I’m comatose; in which case, please don’t wake me up.

Going Monday-Wednesday-Friday from 3-7PM at my favorite dialysis chain’s other local location. It’s a small improvement so far.

I don’t care to say anything more about it for now. It is what it is. For the record, I don’t really think that idiom reflects a good way to deal with most circumstances. If it were, I’d still be at the other location. I used the word “idiom”.

Tags: health
Category dialysis, health, pkd |

A brief history of nocturnal dialysis

Well, my brief history on nocturnal dialysis, which I’m so relieved has concluded. I am cautiously optimistic that the new afternoon shift I start on tomorrow will be an improvement.

9/28/2009
My dialysis schedule wrecks havoc with my schedule…To be blunt, I’m not liking the overnight schedule at all. In a nutshell, six out of seven days a week are directly impacted by dialysis. Either my day ends prematurely by having to head over at 9AM, or my day begins anew in a jarring, undignified way between 5 and 6AM…I don’t want to “get used to this”

10/3/2009
I woke up at 3AM this morning in the usual cold sweat that I’ve had every time I’ve been dialyzed. When your clothes cling to your body and you feel clammy like this, it’s doubtful you’re going to be able to fall back asleep. Around 4:30, I figured I’d try to get back to sleep for the final hour. And then the ridiculously bright overhead fluorescents came on a 4:45. So much for my intentions.

10/13/2009
You do not tell me I have a spot on the overnight shift, and, after I arrive on time and start dialyzing late due to your staff’s inefficiencies, tell me at 6AM after a typically unpleasant morning, that I need to hurry up and get moving because there’s a woman in the lobby who wants to get started. Do not *#*$(#$*#( do that again, please.

10/15/2009
It’s been very tough to get used to. I have not slept well. It’s generally been stressful. But I’m trying to fight through it, because the eight-hour treatment is supposedly better for my body. The good news is that they did make a change to better accommodate me. Last night, I got a bed in a different spot, without so many bright lights and the pressure of needing to make room for a new patient in the morning. For perhaps the first time, I actually slept pretty well. But that still means a harsh wake-up around 5:30. It will continue to take getting used to.

11/22/2009
The nocturnal dialysis shift, in particular, should be quiet and peaceful, but it is often anything but. The volume of conversation is completely inappropriate…Staff moves about, practically stomping on the floor to the point that my bed vibrates. Staff acts like this is happy hour at a bar rather than a sensitive patient environment..And I cannot imagine that I can tolerate it much longer, let alone potentially YEARS…I do not think I am unreasonable to expect a PROFESSIONAL environment, where SINCERE efforts are made to limit noise and disruption and disregard for patients’ well-being…When I have to begin my day with the chaos in that room, IT RUINS MY DAY…I need ******* to shape up…or I need to get out of there.

1/10/2010
Maybe I ought to go back to the 6am shift. That was loud, too, but I’d manage to fall asleep…I’ve been very worn-out on Tuesdays and Thursdays at work, so the overnight shift of dialysis isn’t necessarily the best thing for my job.

2/3/2010
I can still hear Mr. X’s bellowing and frequent laughter, puncturing any peace I hope to have here at dialysis, which is a hopelessly unpleasant experience…I desperately want quiet here at dialysis, but I know I’m never going to get it.

2/10/2010
It’s 11:21. Mr. X is either on the phone or chatting up another patient. Through my earplugs, headphones, and audiobook that’s at full-volume, I still hear his booming voice. I cannot fall asleep, even with a sleep mask on, while the horrid lights, are on above me, by the dozen. The lousiest part of this is that I KNOW my Thursday is already screwed.

3/24/2010
Mr X is as loud as he’s ever been tonight. I want to leave duct tape on his bed… I hate this. Lack of peace. Lack of privacy. Feeling lousy after I come off, so I either go back to sleep and miss part of the workday, or I make it into work and feel horrible.

4/15/2010
I could argue that I might not have bronchitis right now if the temperature at dialysis didn’t dip to 58 degrees last Wednesday night…It doesn’t say a lot for my dialysis treatments when I choose to stay home for the good of my health.

4/21/2010
I came into dialysis tonight and immediately heard The Tech’s gospel blaring from the radio from 75 feet away…Sub Nurse dared to complete turn off the radio…The Tech was not amused.

5/1/2010
3am… No one has popped open a can of Coors Light, so why have blasts of Rocky Mountain air been enveloping my dialysis bed?

5/26/2010
There’s no incentive for them to address my issues in a meaningful manner.

6/4/2010
There’s no reason why the radio should still be on at 11:54. This is ridiculous.


6/22/2010
I can feel myself catching pneumonia. I’m not exaggerating. Waking up covered in cold sweat. Frigid air blowing on me. Hooked up to dialysis machine so no way to get any relief. I’ve gotten bronchitis and sore throats from this. This unbearable sweaty freeze. I’ll feel the consequences later. They don’t take this seriously. Fixing the AC cuts into their bottom-line. I’m too exhausted to fight anymore.

7/9/2010
Dialysis still a pain in the ass. No one left to blame. Garrulous patients, waking up to sweats, waking up to frigid air, being paralyzed in deep sleep after coming home, feelin feverish the entire time i am at work…no desire to do anything productive after work on Tuesdays and Thursdays.

7/17/2010
It really is THAT bad. Spend an hour in a sauna. Then stick your head in a freezer for a half hour. This was dialysis for me this morning. I must record that THIS is not acceptable. I must figure out something else.

7/22/2010
I’ve figured out something else.

Tags: health, retrospective, summary
Category dialysis, health, pkd |

Enough

It really is THAT bad. That’s why I’m going to spend a few minutes at 5:40 AM in my car in the parking lot at DaVita to type this out.

Spend an hour in a sauna. Then stick your head in a freezer for a half hour. This was dialysis for me this morning.

But I don’t believe for a second that this is how it needs to be. I am supposedly doing so well on dialysis…at least my labs say so. I can’t help but think I actually could be doing well on dialysis.

But not here. It’s never going to work here.

And when my blood pressure has dropped lower than usual, and my soaking head is freezing, and it’s a huge task to pack up my bedding and belongings, the tech could give me a couple of minutes before scrubbing down the machine that is inches from the bed. There is no room for me to do what I’m doing while she’s doing that. I think it’s common courtesy. But after almost 11 months here–holy sh*t, it’s been THAT long–I should not be and am not surprised.

I must record that THIS is not acceptable. I must figure out something else.

Tags: health
Category dialysis, health, pkd, yet to categorized |

Skipping dialysis for my own good

IPhone post from my own bed on a dialysis night. Decided I am too tired for dialysis tonight. That sounds like a silly excuse, considering I just need to drive there and then could, in theory, go to sleep.

I feel like I’m too tired to rely on my dialysis sleep to get me ready to have a productive day tomorrow. I’m making the decision that it’s actually better for my health to skip dialysis tonight. On Tuesdays and Thursdays, I tend to get to work significantly late, and I still feel feverish all day. If I somehow forgo extra sleep at home and get to work on time, I feel feverish AND exhausted.

If I am stressed because I am either missing too much work or trying to get in extra work off-hours, it has repercussions for my physical health…that whole mind-body thing.

And while not the main reason I’m skipping tonight, it is nice to have privacy on a Wednesday night. It is nice to lie in my bed. It is nice that my pets don’t feel abandoned.

Perhaps it would be nice to skip dialysis for something exciting.

One of these days, especially if I have my kidneys removed, skipping dialysis will not be an option. I don’t know how I’ll cope with that. My friend copes with that. I guess he copes because staying as healthy as possible is not optional if you want to do right by your family, the people you care about and who care about you. He’s also a person of great faith. Alas, my brain isn’t wired for faith, so I’ll have to figure out something else.

Tags: health
Category dialysis, health, pkd |

Ikea and the local progressives and metablogging

I blogged via iPhone Thursday night and didn’t post it. It’s probably just as well, but, at 2AM late Saturday night, it’s Ambien time again, and my self-censoring doesn’t work well right now.

I’ll block-quote this in case I have any observations 48 hours later.

New bed sheets! Rarest of occasions. From IKEA. I love IKEA. written by iPhone, got some ambien going on so there are my excused for a disjointed post.

Today, I assembled my big purchase from IKEA–a new chair. Maybe I’ll have a Pulitzer-winning post about that in the days to come. Here’s a spoiler: it’s a POÄNG. (For some reason, the website fails to list the combination that I actually got.)

Dialysis still a pain in the ass. No one left to blame. Garrulous patients, waking up to sweats, waking up to frigid air, being paralyzed in deep sleep after coming home, feelin feverish the entire time i am at work…no desire to do anything productive after work on Tuesdays and Thursdays.

No comfort to be told that my “numbers are great.”

I’m getting lots of advice regarding whether I should have my kidneys removed. It’s seeming like the doctors are going to leave this chilling decision up to me.

What good will having the surgery or the transplant do me?

A nephrectomy post is in order for someday soon. Nephrectomy…what a lovely word. Oh, and I’d be getting a double-nephrectomy.

Tonight, the Durham young progressives who go by that name that I will not explicitly address had what was probably a pretty neat confluence of the local progressive intelligensia (word?) I long ago decided I felt isolated from this group despite numerous attempts to assimilate.

Too many grad students and post-docs and artists and community organizers and bikers and tri-athletes and assorted hip people of the world…I feel like a NOTHING around these people and when I do go to something, I leave the gathering prematurely .

I have yet to find a way that would let me stay. I reached out a couple of times trying to get the magical answer from the wise oracle of community organizing. Too busy or my problem is too intimate for an answer to be provided.

These kinds of thoughts related to feelings of alienation occur whenever anything is happening around town that I think I’d be interested in if not for the feeling that I just don’t quite fit in. Unfortunately, this means I don’t go out and try new things. I become more and more isolated from people. I live, if I am to believe The Independent and Bull City Rising and Barry’s blog and other exceptional sources, in a progressive, smart, vibrant, fun city. But I stay in my house.

My WordPress admin page to Add New Post…I have a blog…what do I want to do with my blog…

I star dozens of Google Reader articles every week, ostensibly because I want to share them with people…but I usually don’t…because I don’t know if I’m preaching to the choir…or trying to grab the attention of people who might not otherwise care about something..and am I really making anyone care who didn’t before…or is it ok to just post something to make the point that I care about something…

I have more lousy experiences at dialysis than I chronicle in here…but everyone gets the point that dialysis sucks…what good does it do to chronicle it in detail…especially because I’d truly prefer not to think about it when I’m not actually there…

The occasional ramblings about feeling like a failure…Feelings along these lines bubble up far more than I choose to write about them in here…I don’t know what I am accomplishing when I publicly write about these feelings.

Pet photos…I keep taking ‘em, and I keep posting ‘em…the world must see my pets…

And why I’m reeling off thoughts about blogging tonight? I just noticed it’s been a week since I posted anything.

But I’m digging up what I had saved on my iPhone only, and you’ve read that. So this is sufficient for tonight.

It’s 2:35AM now. Sleep very soon…and likely sleep until I convince myself that it’s ridiculous to remain in bed any longer (likely 11 or 12:00).

Where’s the requisite pet pic?

Tags: cats, durham, health, metablogging, personal, pets
Category consumer stuff, dialysis, durham, health, metablogging, personal, pets, pics, zellouisa |

Craigslist for a kidney

I know you mean well, but, no *****, I will not ask for a kidney on Craigslist. I don’t care if Duke would do a transplant from a stranger, although I’m pretty sure they won’t; there are legitimate reasons to have a policy against this. I have an appointment down in Charlotte this week, and I will ask them, just so I know. In any event, I wouldn’t have a good story to tell in an ad, and I’m not going to make stuff up.

It also doesn’t help to read about anyone who’s been waiting for four years, who was “weak and tired from spending nine hours a week in dialysis”. Chances are, I’ll still be in this boat two years from now. I’d like to think I won’t be weak and tired. I can’t afford to be.

However, so your suggestion is not in vain, I will at least post here the link to the article about the woman in Arizona who got a kidney off of Craigslist.

Tags: health, transplant
Category health, pkd |

Dialysis Non-Rant

I’ve blogged before directly from my dialysis bed at 5AM. The result is usually close to a screed. I almost posted my thoughts early this morning, but, ultimately, I’m not so proud of the screeds. I sound like a broken record after a while. For younger readers, a record was this black vinyl disc that stored music. If it was scratched, the record would repeat the same bit of music over and over again.

I figured I’d post an edited version tonight. But I don’t even feel like doing that. I’m back there in 23 hours, and I’d rather not think about it at all.

Funny, when I think about anything I should be doing, I choose to do nothing other than watch reruns of Everybody Loves Raymond, because knowing how I’m spending tomorrow night completely deflates me.

So…this morning…

(paraphrased)
I can feel myself catching pneumonia. I’m not exaggerating. Waking up covered in cold sweat. Frigid air blowing on me. Hooked up to dialysis machine so no way to get any relief. I’ve gotten bronchitis and sore throats from this. This unbearable sweaty freeze. I’ll feel the consequences later. They don’t take this seriously. Fixing the AC cuts into their bottom-line. I’m too exhausted to fight anymore; they probably count on this. As usual, I don’t see this ever getting better.

(actually written, foreshadowing my comments tonight)
This is as bad as I make it sound. I can forget this in between treatments. I have to, or else I’d be filled with rage constantly and be unable to function.

This morning, I spent six hours back in my own bed, alternating between fevers and cold sweats. I was not sleeping comfortably but I was too out of it to do anything about my alarm going off literally dozens of time. Hitting the snooze button was almost part of the dreams I was having. And I had had some bad dreams too.

I can’t afford to miss work like this; I wound up working half a day, coming in this afternoon.

Nine months in, dialysis really isn’t going any better than it did when I started. I’m pretty sure it rarely gets better for anybody.

Bonus kitty pic

Tags: health
Category dialysis, health, pkd |

Just add butter, olive oil, onions, mushrooms, and a pinch of salt

It’s been awhile since I shared this image, of a normal kidney next to a kidney afflicted by polycystic kidney disease. Kinda makes you hungry, doesn’t it?

No? Kinda makes you want to donate a kidney, doesn’t it?

Eh, I tried.

Tags: health, kidneys
Category health, pkd, yet to categorized |