Tell me about it

I know it seems a little dramatic to keep focussing on that day, February 24, 2012, but its the day my life changed. It’s the only time in my life with all seriousness I can say, “I almost died”.

I find it crazy and surreal. I consider that nearly a year before I was fighting with the monster in my head. Fighting against despair. And then, as I saw the light at the end of the tunnel, I was suddenly fighting for my life. With my body. It betrayed me.

I was thinking the other day how I’ve maybe changed. I know I take more responsibility for my nutrition and for any choices that keep me from or make me feel crappy in a given day.

While I still slack with a workout, I do at least one exercise a day. It seems small, but I think it’s helping. It’s a plank for 60 seconds. They’re hard, trust me. I always describe it as the top of a push-up. Even when I’m exhausted, I do one for at least 30-60 seconds. See, I miss yoga. I’ve slacked on my practice a while back and with the fluid in my abdomen, it seems harder to get  back in to. My stomach won’t condense. My forword folds lack form and I can’t get comfortable in child’s pose. So, I’ve started small.

Any change is super slow. But I know I’m starting to have a waist again and my arms are taking up less room in sleeves. My cardio leaves a lot to be desired but I need to do 30  minutes 3x per week. Starting today.

I know I will have to lose weight for the transplant. I’m thinking about 50 lbs. At least I know that’s my goal weight. So, I’m also trying to follow a high protein, high fiber, low phosphorous diet.

Its hit or miss and fortunately, I have very few restrictions if any. I am the anti-kidney patient patient. Fortunately all my labs are good and my general nutrition is good. Now I just have to figure out how to adjust it so I can lose weight.

I don’t typically talk about this stuff. I feel like if I share my diet and workout, I’ll stop. So I’m taking a chance on you.

Here we go.

Still Here

Pro tip for you: when it comes time to finally disconnect the drain bag from the line, twist the tubing. I found this out by trial and error, wasting entirely too much time on tugging on the tubing and nearly hurting myself.

I’m losing track of the number of  weeks I’ve been on PD and I’m not sure if it’s a good or bad thing. I’m getting used to positioning myself so I don’t roll on to the tubing in my sleep. I started PD April 4th. Began on the cycler June 28th. It feels like forever.

Have I mentioned you can’t be a light sleeper and use the cycler? Dear God that thing is loud! I struggle for nine (maybe more like 7, since I read or watch my kindle for a bit) hours to sleep. Then at about 7/7:30AM when things go quiet I get some solid sleep for a couple of hours. I’ll sleep after me transplant.

May I just say to all the optimists out there: while I appreciate the words of encouragement, shut up. I’m a tired, cranky, realistic introvert. It helps me to keep moving if I spend a little time angry. Don’t tell me it will get better (or I’ll get used to the pumping and whirring of the machine) when I complain, just commiserate for a second and move on. I don’t want the pep talk. It actually pisses me off.

The thing about this illness and the suddenness of it all is that I don’t really have time to deal with anything. I’m just doing what medical people tell me to do and keeping my head down. I’ve spent maybe a total of 20 minutes on “why me” and then it passed because I felt like I was wasting time. Like sleep, I’ll ride the pity express after my transplant. That’s when I’ll have time to process.

One more thing. The crazy 15L drain bag is insanely heavy. I’m really surprised they don’t have on with a handle. It’s not like anyone on the cycle hasn’t spent time doing PD manually, so everyone should already have in IV pole. It least lifting it on to an IV pole wouldn’t be as bad a lugging this 25lb bag down the hall to the bathroom.

There’s got to be a way to transport it without having to do the heavy lifting. I can’t imagine someone 30 years older than me (or sicker or weaker) getting this heavy, ungainly bag to the bathroom on her own.

A good night’s sleep…ahem

It’s not a bad thing to live your life by a clock. I think I’m just angry that I had to decide to not try to see fireworks this year. You see, my Baxter delivery day was this morning between 7:45 and 10am. and my very cute delivery guy seems to like to arrive right at the beginning of that window. That meant since I spend 9 hours on the machine, I had to start prepping at 10pm just in case any alarms go off. Which of course they did. I managed an awkwardly fitful night’s sleep because of the alarms and somehow still got off the machine with 10 minutes to spare before he arrived.

There’s also the noise to contend with. That puppy is mad loud! You can’t be a light sleeper and go on the CCPD machine.  I miss the quiet.

I miss sleeping with abandon at night, too. I know that sounds odd, but I do. If I sleep on my stomach, I might set off the alarm. If I catch the tubing under me or wrap myself around it, I might set off the alarm. I do move a lot when I sleep, or at least used to.
I had a dream the other night that aliens or mad scientists had come to harvest the creepy-crawlies they’ve implanted in my abdomen through the PD tube and machine. I woke up laughing at  myself for that one.
And yet its hard not to think of yourself as a science experiment when you try to make sure no one can see the PD catheter through your jeans – because you can feel it through them.
Every day I’m at least a little scared that I won’t wash my hands long enough or forget to close the vent, turn off the fan, close the door all the way, forget my mask at a crucial time and some crazy microscopic bacteria is going to find its way into my PD tube. I’ll get deathly ill and wind up back on hemodialysis.

I know that’s excessive, but “be super careful” is the advice the one person who was on PD that I could talk to. Almost no one on hemo had any real answers when I asked questions. You’d think it was some secretive cult or something. I needed desperately for someone to tell me how it felt, how soon the exhaustion would stop. nobody actually ON hemo would or could give me any answers.

It doesn’t hurt any more than having blood drawn – minus the needle prick. It feels weird, emotionally, to watch your blood drain slowly out of your body and pump back in.
I couldn’t stop touching the tubing under my skin. It feels hard and foreign. I often wondered how my skin didn’t break down over that spot. Actually, the only time my skin did break down was from the adhesive on the myriad types of tape they used to secure the bandage. (Okay it was only 4 or 5, but how often do you get to use the word Heather Chandler got wrong on her vocab test?)
The actual exit site of the hemo catheter can be sore for…ever. I only did hemo for about 10 weeks. The whole time when they did a bandage change, the exit site would sting.

I got told it was normal.
None of this feels normal.

Before the beginning

I moved to a new city hoping to find myself, support myself and perhaps even get a life. Things had stalled for me back home. I couldn’t even get a non-temp job through nepotism.

The draw of living someplace where few people knew me was almost too strong. So, when the opportunity came to move, I jumped at it. Acclimating takes time and, hey, I’ve got all the time in the world, right?

My roommate already had a job and began looking for doctors and a bank – as this is the grown-up thing to do. I had time. Wait until the new year since my former state likes to tax people even when they don’t live there. So, at the start of the new year I managed to get a temp job. Actually two, back to back. Once I started working, finding a doctor was low on the priority list. But, this is totally doable until I get insurance.

After working at the second job for a month and a week after I’d applied for insurance so I could better afford my asthma medication, I started feeling more tired than usual. Usual really is the operative word since I think I’ve been tired for about two years. I was also having some breathing distress, but I’m asthmatic and its winter.

Par for the course. Until Friday, February 24th around 7am.

I had to sit down to brush my teeth because my body just stalled out. When I got back to my bedroom, I realized I’d be late for work. Just as I picked up the phone to call in late, I realized I wasn’t going to make it to work and started an email to my employment manager to let him know I wasn’t going in to work and would be heading to the emergency room with an asthma attack. I’ve never had such a terrible time catching my breath.

In the time it took to google the closest hospital, I started sweating and realized I wouldn’t make it to my car. I couldn’t even get more dressed than adding socks to the nightgown. In deciding that I had to call 911, I also tried to figure out how the hell I was going to get to the front door which was deadbolted. I gasped my roommate’s name and had her call. I guess pitch and projection count for something since she actually heard me and came rushing to my room.

The next few (more like 12) hours is still kind of a blur. Five fairly hot EMTs arrived, I think pretty quickly, and got me to the ambulance. I kept trying to focus on slowing my breathing so I could catch my breath. That and hoping they would knock me out so I wouldn’t be so scared. When they gave me nitroglycerin on the way, I guess that freaked me out. But it also made sense. How do I explain that it just didn’t surprise me that my heart was failing. I was finding out my secret suspicions were accurate.

Ambulance and ER were a blur with my desire to breathe except pleading in my head for people to yeild to the ambulance. It took a few hours, but my breathing became less labored and I stopped sweating. I managed to send out some texts to family members in the area and my parents were called.

I like how despite how hard they try to keep you from using a cell phone in the hospital, no one says a thing when you’re the patient.

It felt like it was nighttime by the time I got admitted, but I don’t think it was. People showed up and came to me in the ICU. They wouldn’t let me eat because they were afraid I might vomit and choke to death. I was pumped full of drugs to lower my blood pressure and take off the fluid. I was septic and both my heart & kidneys were failing.

I spent the next twenty-one days in the hospital. I started dialysis (on March 1st) while they searched for the reason my body gave out. A bone marrow biopsy, kidney biopsy, insertion of the dialysis catheter in my jugular and peritoneal dialysis catheter in my abdomen.

I was urged to do peritoneal dialysis, told its kinder to the kidneys. Honestly, even though I took notes, I did what was suggested. I don’t know if I would have decided on hemodialysis if I’d had more time. I didn’t have more time. I didn’t have what I thought was warning. Everything that I felt in the weeks and months leading up to this could be explained away by anemia, asthma, and poor sleep.

So here I am, jobless and waiting for groups of social services to kick in. I have applied for disability, medicare, Medicaid, and social security. Still no real thinking has been done. Still healing and resting and I have people telling me to stop worrying about how I will pay rent, I have my health to consider. I did mention that I have a roommate, I didn’t mention that we live in one of the more expensive areas in the country.

He sat in a terribly prickly place

I know, its stupid that I feel so hopeless. There is a world full of people who are so much worse off than me. I have a friend, one of the coolest kids I’ve ever met, who has lived with heart disease her entire life. I’m sure she’d knock me up side the head for the dumpster feelings I’m having.

I’m just so tired and its five days in. I am bloated and uncomfortable. Clearly, I’m also whiney and bitchy.

I’m being coached through applying for disability, social security, Medicaid, and medicare. Have i mentioned that this kinda makes me a failure in my heart because I should be able to take care of myself, to support myself. After all,that’s what adults do, isn’t it?

On top of it as a treacherous place to be. I get letters from different social agencies nearly every day. Some verify information incorrectly. Some are denying benefits based on my first application. An application which the social worker at the hospital said was fine. I have to call and visit her to find out what’s going on each time I get a new letter. Some of them are requesting I file more forms, despite having given them all the information previously. Did you realize that you have to make copies of everything you send in? Because they get crap wrong. I just love the from that requests you work history for the previous 15 years.

Yeah, I said it.

I recognize that sometimes things have to be difficult to serve as a deterrent for fraud, but come on, I’m honest. It pains me to become dependent on the state. I don’t know what to do or how to feel.

Autopilot.

Day…whatever

Perhaps this is my whiny day, I’m not sure yet. Its been about 8 weeks since I started PD and 5 days since I started the CCPD machine. This shit is bananas. I have managed to do 3 successful exchanges since this began. We’ve had a blackout, which was fun. And I’ve spoken to my PD nurses more often than my family this week.

Crazy thunder-storm, power outage.

I sat in my bed with a gigantic red flashlight and the inch-thick manual waiting for the lights to come back on. There are a couple of options.

30 minutes,no problem. The machine will come back on by itself and restart your program, no alarms to deal with.

After 30 minutes the alarm sounds to tell you you’ve got no power. At which point you you’d better take what info you can off the screen, ’cause I’m pretty sure that’s all the battery power there is.

Within 2 hours, the machine will restart with an alarm and you have to push an overly complicated series of buttons. (How five buttons can become complicated, I don’t know, but this is my story and I will embelish however I see fit.)

After 2 hours, you’re pretty much screwed. The instructions say to disconnect and  call your PD center.

Now this is a great idea if only when I call the hospital, they’d actually put my page through. I digress.

Ultimately, I think I’ve learned so far not to panic when things malfunction. I’ve read (ok, I’m reading, its seriously an inch thick!) the manual, my PD unit really is great and Baxter has 24-hr support. Now all I have to do is find someone to do all this crap for me.

I guess I’ll curl up in a ball and cry sometime after the transplant.

How to create a biohazard in your very own bathroom

Morning has arrived and my PD has conspired with dawn to piss me off.

I hadn’t disposed of last nights final two drains and began my drain and fill this morning. In the midst of preparation I got distracted and forgot to clamp the fill line, then noticed that my drain bag was filling too fast. Sonofa! I recouped, clamped it and finished my drain. I had to grab a new bag and weight all three bags to figure out how much to put on.

Whew. Got that done…at least moderately successfully.

I take my IV pole to the bathroom. On the way there, I discovered the maximum weight the pole will hold before collapsing on itself. Six thousand grams, FYI.

In to the bathroom. I put the drain lines in the toilet and get the bright idea to raise the pole back up. I guess I must have raised it too far. You know that scene in any number of 80’s movies where the intrepid fish-out-of-water hero has a fight with a hose that gets out of control? Yeah, that kind of happened with my IV drain and the bathroom.

At one point, after bending over to wipe the floor with my back to the shower, I stand up to have not only my underwear and nightgown in my butt crack, but the bright green flowered shower curtain too.

The towels are in the laundry. The floor has been disinfected. Now I just have to check with the CDC to get my new biohazard control assignment.