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I’ve been slack lately, and I can’t blame it on my illness.  In fact, I feel pretty good these days, almost back to my old self.  Yeah, I still get tired more quickly than I’d like, mostly due to my screwed up sleep, but it’s still no excuse for the lack of action around here.


I get home from work, eat something, then spend the next couple hours playing The Sims or watching something on Hulu or Netflix before rushing to get myself hooked up to the machine in time.  Yeah, it’s good to relax, but I think I’m taking it to an entirely inappropriate level.


On weekends, I don’t even have the work excuse, yet I do the bare minimum.  This place needs swept and mopped, empty boxes need to be flattened and disposed of, the bathroom needs to be cleaned, and the kitty litter box needs to be emptied.  Instead of doing any of these things, I watch TV, play games, and nap.  I do laundry because I have to.


And there are other things I need to do.  I want to start a Patreon page so I can get some money from my photography, I need to e-mail a prospective job prospect, I need to clean off one of my desks in preparation for another job prospect, I need to get some props built for my next photoshoot, yet I’m doing none of those things.


This really has to stop now.  I took the last two days off from work in order to burn vacation time and I’ve accomplished next to nothing.  In fact, I was supposed to write this piece last night, but ended up watching an old episode of Sherlock instead.


Today’s plans are dependent on another person.  If my friend is coming over for dinner, then there is one set of objectives.  If not, then there’s another.  Until I find out, of course, there are still things I can do.  It’s just a matter of nailing myself down to doing them.  No matter how the dinner situation falls out, though, things will get down around here.


It’s time for me to get off my ass and do things.




And Boredom Set In

The days drag by and the nights are incredibly short.  I sit here in this chair, which, while comfortable, can be very boring, and I study and sleep and game and write and still the day goes by at the speed of a disabled slug.


I get home at night and have barely enough energy to make and eat some supper before collapsing on the couch.  If it wasn’t for friends, I wouldn’t get anything done at all.

 My Textbook

Ivy came over last week and cleaned my kitchen.  Bob came over on Saturday to help move some heavy objects.  The ex was there Saturday as well, to help with grocery shopping and some cleaning.  Unfortunately, it’s hard to keep up with stuff in my current state, which is fatigued.


Of course, if anyone else wants to volunteer to come over and help, I’d welcome both the assistance and the company.

 My Perpetual View

I asked my nurse about the perpetual fatigue today.  It’s hard for her to say until my blood work comes back in the next couple days, but she thinks it’s either my hemoglobin dropping again or my urea rising again.   Since I don’t have any of the other symptoms of mega-high urea, I’m betting on the hemoglobin issue.  Fortunately, I got a shot a week or so ago just for that issue, so it should start helping soon.  The good news is that I don’t have any other symptoms.  Other than being tired all the time, I feel fine.


I went out last Friday night to meet friends for dinner and a movie.  I had a great time, but I may have spent energy I couldn’t afford.  Still, I’d do it again.  My sanity is important, too, and I find I need a little social contact to maintain it.

 The Binders with Every Meal

Speaking of social contact, I finally heard from my teams at work when they sent over a huge gift basket.  It was filled with towels, wash cloths, blankets, a bath robe, lotion, soap, Gator-Ade, soup, jell-o, tissues, a candle that smells like men’s cologne, slippers, and probably some other things I can’t remember at this point.  It was all wrapped in sparkly tissue paper, so my living room looks like it was invaded by strippers, not that that’s a bad thing. 


Of course, it made me feel all warm and fuzzy, so I had to kill a puppy in order to balance my humours.  Just kidding!  That’s not how you balance humours.


Tomorrow will be a little different.  Instead of coming here to the clinic, the clinic will be coming to my place.  This wouldn’t normally happen until next week, but I’m getting a delivery of medical supplies tomorrow morning and I need to be there to sign for it, so Nurse Cindy is packing her goodies into her car so I can get my treatments at Durgae Heim tomorrow. 


Not only will it be a test run on how things go at home, but I’m sure she’ll be checking out the digs to make sure everything’s clean enough.  It should be, but you never can tell.


Ah, Nurse Cindy just handed me my diet plan:

Protein-100 gms/day


Potassium-3 gms/day

Sodium-2500 mg/day

Fluid intake needs to be equal to output


That’s not too bad.  It’s, in fact, more than my normal input, so I’ll probably gain some weight.  That wouldn’t be bad, either, if I gain it in the right places.


And on that note, I’ll end this for now.  More to report later.



The good news is that I feel better than I did last week.  Of course, it's been a painful process to get here and there's still a lot of work to be done.

On Monday, I started my peritoneal dialysis training and it had to be one of the most pain wracked days I ever had to endure.  I was hooked up to a machine called a Liberty Cycler, which is designed to pump a dextrose solution into my peritoneal cavity via the tube they implanted Friday, let it sit for a while, then pump it out again.

The Monster

The training involves not only teaching me how to use the machine, but training my guts to accept a couple liters of liquid in addation to the stuff that's already in there, like my intestines.  To make matters worse, the levels of urea in my blood were high enough that they bypassed the normal four week healing period to get me started right away.  So, not only was the goop puching against my guts, it was pushing against fresh incisions.  To say it hurt like hell is a major understatement.

I didn't scream in pain, but it was damned close.

So, the decision was made to do it manually.  This would take longer, but put less pressure on my new scars.  It still hurt, but not nearly as much.

The Gizmo

For eight to ten hours a day, I sit in a chair, get goop pushed into me, wait for an hour or so, then get it pulled out of me again.  The waiting, or "dwell" as Nurse Cindy calls it, is relatively painless.  The pushing and pulling is getting less so each time.

But let's add another complication!  I haven't pooped since the surgery and this has Nurse Cindy and Doc Kelly worried.  It's probably what's causing a lot of the discomfort during the fills and drains.

Still not enough problems?  How about we add the fact that the process actually dehydrates me and has caused my blood pressure to drop alarmingly at times?  Is that enough for you?  It's enough for me.

But we soldier on, Nurse Cindy and I.  Hour by hour, day by day, we fill, dwell, and drain.  She pushes me to drink more fluid and pumps me full of saline when that isn't enough.  "Sorry," is her favorite word.  She uses it every time a fill or drain causes me to squirm in pain or when she has to stick another needle into my already bruised arms.

And, ever so slowly, it seems to be working.  I feel a little better every day.  They took more blood yesterday and the test results will come in Monday and Nurse Cindy doesn't seem all that optimistic because of all the complications we're running into, but there are signs.

For one, I'm throwing up less.  For another, things taste less awful.  I took Jeff, my boss, friend, and ride, to Outback the other night and was able to taste the prime rib and keep it down.  I threw up the next morning, but that was mostly bile.  The burrito I got from Moe's last night was mostly tasteless, but that could have been because it was a Moe's burrito.

I was able to taste my coffee this morning!  You have no idea how happy that made me!

Food and drink that are extra sweet, like sodas, still leave a bit of an aftertaste in my mouth, but I can do without those for the moment.  Right now, my diet consists mostly of soup anyway, though that's rapidly getting old.

The End Of My LineI've still got about three weeks of training to go and next week they hope to hook me back up to the machine to make things easier.  Cindy needs to teach me how to use it, how to sterilize myself and my house, particularly the bedroom where I'll be hooked up each night.  It's like training for a new job, which I suppose it is.  For the next few years, that machine is going to be a huge part of my life.

I've got a team, though, to help me.  In addition to Doc Kelly and Nurse Cindy, there's the other nurses at the clinic.  There's Debbie the Dietician and Carol Anne the social worker.  There's also a financial whiz who I'm supposed to meet next week who's supposed to help me with whatever the insurance doesn't cover.  They're making this as easy as they can on me and I totally appreciate it.

Like any decent job, I've got the weekends off.  Of course, Cindy sent me home with homework this weekend.  I'm to drink as much liquid as possible, keep track of my input and outflow, keep track of my blood pressure, and poop.

The first three are proving to be pretty easy.  The last one is harder than you might think, despite chemical assistance.

So Far, So GoodSo, keep your fingers crossed, kids, that my numbers show some improvement on Monday.  I'm due for some goodness.


New and Improved

After about four hours of sleep, I pushed myself out of bed and shambled around the house.  I felt like I had no energy and damned little will, but there were things that needed to be done.  Showering was like the tale end of a marathon but I took my time because it's the last shower I'm allowed to take for three weeks.  I laboriously scrubbed with the disinfectant soap they provided.  It took me an hour, with plenty of rest breaks, to get dried and dressed.

No tight jeans today; loose dockers and a button up shirt.  Boots because they're still the easiest to slip in and out of.

I wasn't supposed to eat or drink anything, but my mouth felt like the inside of an oven, so I'd rinse and spit with cold water.  It helped, but not much.

My ride showed up at precisely 0700 and we headed to the clinic, getting there early.  I didn't have to wait at first; they showed me right into the staging area, put me in a snazzy outfit and took my vitals.  I got asked the usual questions and gave the usual answers and they stuck a needle in me for the IV.

Dressed for Success

Then I waited.

And waited.

And waited.

They'd told me I'd be in and out in ninety minutes, but the customer before me was apparently taking up a lot of time.  I fell asleep on the gurney, occasionally waking myself up with my snoring.

Finally, around 1000, they wheeled me into the OR.  I was shaved, scrubbed, drugged, and had a tent placed over my head.  They did not knock me out, preferring to use a local anesthetic.  For the most part, it was okay.  There was some pressure and some pinching, but nothing horrible.  After about an hour of staring up at some blue fabric and listening to the medical banter around me, it was done.  They bandaged me up and wheeled me out to the staging area again, where they gave me a bottle of water and a chicken biscuit.

I couldn't have cared less about the biscuit, but that generic water was the best thing I ever fucking tasted!

After Effect

Then it was sign here and here and head off to the other office to get my tubes flushed.

That was worse than the surgery.

The whole idea of peritoneal dialysis is that they pump your stomach cavity with a glucose solution which picks up the poisons the kidneys aren't filtering out, then they pump it out of your stomach cavity.  Eventually, I'll be able to hook myself up to a machine at night and it will do it while I sleep.

Before that can happen, they basically have to train your insides to take about two gallons of fluid that weren't supposed to be there in the first place and, like any other training, it is painful.  They tell me it will hurt less and less as time goes on.  

I sure as hell hope so.  For the next three weeks, I'll be at the dialysis center every day, training my tummy.

Without the Bandages

When I got home, I took about a two hour nap and I've been able to get around fairly well.  There's a little bit of pain and sitting and standing are problematic, but they've told me I can take ibuprofen for the pain which makes things a lot better.

I was able to choke down some beefaroni and half a 7-Up before the taste started gagging me.  That's what's going to keep me pushing this, no matter the pain.  For Christmas, I want to be able to enjoy a warm pumpkin pie with whipped cream.  I need no other present at this time.



Do or Die

I haven't posted a lot here because it would be damned depressing for you to read.  The house is a wreck, I'm a wreck, and the world has been pretty grey.  

Because my kidneys have utterly given up on their only job, none of the waste is being filtered out of my body, so it backs up into the soft tissue.  Guess where you have a lot of soft tissue.  Everything I eat or drink tastes like piss to some degree.  I can't eat or drink anything sweet because the sugar reacts with the crap in my mouth and produces the worst after taste imaginable.  Salty foods are only marginally better.  So, my calorie intake dropped dramatically.

To make matters worse, any food I was able to swallow didn't stay down long.  Remember that I'm basically poisoning myself any time I swallow.  The body doesn't like that.

On top of that, I ran out of my ropinerole last week and the pharmacy wouldn't give me a refill without talking to my doctor, who happened to be on vacation.

So, I couldn't eat and I couldn't sleep.  The days got long, let me tell you.

Thankfully, I had an appointment with the doc on Monday.  She renewed my ropinerole script and gave me something for nausea and we talked about my upcoming procedure.  She scared the hell out of me because she said we'd start the peritoneal dialysis about ten days after the catheter was put in.

"Ten days?!  You're kidding!"

"We need time for the incision to heal."

"Doc, I don't know if I can last ten more days."

"Is it that bad?"

I think it was the look on my face that did it.  "Let me talk to the dialysis center," she said.  "And I'll see what we can do."

So, for the next few days, I was able to keep down what little food I was able to swallow and I was able to get some sleep, but I was worried about how much longer it would be before I'd be able to start the road back to nornal.

And the answer came today. Tomorrow, I get the catheter put in and Monday, I report to the dialysis center for the first treatment.  I think I can last that long.

Of course, the down side is that I have to do that every day for the next three weeks.  For eight hours a day.  After that, I'll be able to do it at home while I sleep.

I can live with that, though, I think.  I've got FMLA and vacation time so it shouldn't hit me too hard financially.  I may be eating a lot of Ramen noodles, but right now they sound fucking delicious!

Tomorrow, I get up at "oh dark thirty," shower (my last one for four weeks, they tell me) with the surgical soap they gave me, and report to the vascular center for a quick in and out operation.  I'm supposed to be drinking the laxative crap they gave me but one glass made me vomit all over the place and, since I've had nothing solid to eat for days, I don't think it's going to matter.

So, wish me luck.  If you're really good, maybe I'll take pictures of the operation.