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.

What they didn’t tell me before starting Peritoneal Dialysis

The setup seems simple: four exchanges a day, it takes about half an hour each time.

Except.

Well, my tube is obstructed or in a bad position or something because it takes me an hour just to drain. An hour. The surgeon who implanted my sci-fi project has decided its my fault because I’m fat. Okay, he didn’t actually say “fat” he said “overweight”. But when someone has the cojones to blame mystery pockets of fatty tissue on your implant not working when it doesn’t make anatomical sense, we all know he meant fat. He also doesn’t want to fix it without getting paid up front. I call him Snidley in my head.

Let’s just start with the obvious. There is no way it is feasible to work in an office to which I’d have to lug my IV pole, at least two bags of dextrose (because you should have an emergency supply in case you get stranded), several needles & syringes, medication vials, and miscellaneous supplies including sanitary wipes. Not to mention the two exchanges I’d have to do during the work day. That half hour becomes more like 1 1/2-2 hours each time.

I go through a roll of paper towels every four days. I have to find a way to dispose of the needles. The stronger solution makes me feel bloated and uncomfortable. If my drain time doesn’t improve, I’ll have to do exchanges manually until I get a transplant (which requires way more money than I’ll have without a big lottery haul).

It may have only been four days so far, but I dread the alarm for the next exchange.

I guess I feel a little resentful and angry that I don’t magically have the free time in the brochures. I just started this trek and I haven’t thought too much about anything. I’ve just been following instructions.

It really is a ton of work that terrifies me each time I do it. But, I have to do it because I can’t stand the thought of having them drain my blood and cycle it through a machine for four hours at a time.

Hello world!

On February 24, 2012 I had a catastrophic health crisis that left me in heart failure, kidney failure and with a diagnosis of MGUS (Monoclonal gammopathy of undetermined significance). While overweight and with high blood pressure, I’ve never been diabetic – still not. So, kidney disease out of nowhere is kinda crazy. They don’t know what actually happened and they found the MGUS while exhausting all the options.

Since I’m not cleared to go back to work and I have plenty of time on my hands, I decided that this might be worthwhile. I had a TON of questions and it felt like no one had enough or the right kind of answers. I offer myself and my musings while muddling and wading through all the crap and forms and social services and applications to get my friggin’ new kidney.