Sunday, February 10, 2008

CCPD Part III - Setting up the machine

Read the CCPD posts in order, so they make more sense :)
CCPD, at last!
CCPD Part II - Training

Setting up the CCPD machine at home took longer than I expected it to - after all, it was just a matter of plugging in the machine, right? Yeah, right!

I started moving the boxes I'd left on the stairs up to my bedroom - it was past midnight at this point, so I had to do everything without creating too much noise. And realized that the top solution bag would have to be heated, so first thing I did was sweep the top of the nightstand clear of all the clutter, put the machine on there and plugged it in. Set the bag on top and let the machine warm it up (it would take at least a half hour to fully warm up the solution to a comfortable temperature).

Then I still had to clear out the drawers of the nightstand, so I could use the top one for the 2nd 6-liter bag and put some tubing supplies in the bottom drawer (while still having to have space for the flashlight, lightstick, antacid, and other stuff that usually littered the top of the nightstand). I took all the stuff out of the drawers and moved them to the bottom drawer of the other nightstand, and put some more supplies into the top drawer there.

I moved the nightstand closer to the bed, so I would have room to stack boxes between it and the wall. Took the box of red-cap dextrose solution (2 bags remaining), added the remaining 2 green-cap solution bags, and used that as the base to hold the box of pink-cap Icodextrin solution bags. My plan was to put the Ico bag on top of its box - but the level was too low, it had to be more or less at the level of the top of the nightstand. So I took one of the many empty boxes, turned it upside down and stacked that on top of the pink-cap box. So far so good.

The big 6 liter bag fit comfortably inside the top drawer, but now I had no room for my little tray of end-caps and hand-sanitizer. There was just enough room on the nightstand for the machine and my alarm clock. If I set the tray up there, I would just knock it over in my sleep when the alarm went off the next morning. I brought one of my handy little stools and set it by the bed. Now I couldn't open the nightstand - but that wasn't as big an issue because I could simply move the light-weight stool when I needed to open the drawers.

By this time it was past 1am and I was still trying to do everything ultra-quietly. But the outer bags of the solution bags are SO VERY NOISY! I opened all three bags and got out the instruction sheet (3 pages!). Then I had to figure out which was the drain line extension, of all the bags that I'd brought back with me. Once I got the drain line, I set it up to drain into the toilet and brought the other end into the room. It was a 12-foot extension, which gave me PLENTY of slack in the line. Next I opened up the cassette & tubing bag, opened the front of the cycler and inserted the cassette. Figuring out the spaghetti of tubing was another matter, although there was also a "tubing organizer inclulded with the cassette package. Going from right to left, the 6 tubes are:

Drain tube
Top (first) bag - red clamp tube
2nd and 3rd bags - white clamp tubes
Final bag - blue clamp tube
Patient line - the one that eventually attaches to my catheter

The nurse had explained that I should go methodically from right to left while connecting the tubing, so I wouldn't make mistakes. So I started with the drain line, attached it to the extension and made sure that the drain clamp and extension clamp were open. Yes, open. Next, I had to use the thingamajig (the CXD device) to punch the red-clamp line through to the solution bag on top of the machine, that was by now a warm-and-toasty body temperature. The next line went to the bag in the top drawer, ignore the line after that, use the blue clamp line to the final solution bag (the pink-cap Icodextrin solution). Then it was time to hit GO and sit back while the cycler primed the tubing with fluid, to remove all air bubbles in the tubing.

Priming... said the machine. And kept saying it for a good 15 minutes. Then I heard a sputtering sound from the bathroom, strode in and almost had my feet slide right out from under me. I'd forgotten to take off the plug at the end of the drain extension tubing that went into the toilet. And apparently, the machine was pushing hard enough to spray fluid all around the toilet. The door was wet almost half way up. I pulled out the plug at the end of the tube, and the machine happily finished priming. Meanwhile, I was looking for some way to secure the drain tubing to the floor and door jamb, so I wouldn't trip on it if I needed to get up in the dark. And then the solution came to me - I would tape it down, securely. After all, I had lots of tape to play with :)

And after that, all I had to do was connect myself, so I did, and gratefully fell into bed. It was 3am. Only to have the machine beep a warning "Patient line blocked," about 30 minutes in. Argh! I had accidentally kinked my catheter, and blocked the flow. Unkinked it, and made sure it wouldn't kink again even when I turned around in my sleep. And went back to blissful sleep :)

Do you KNOW just how absolutely blissful it is not to have to interrupt my sleep to do an exchange? Absolutely, utterly blissful. That's how blissful. You notice I said "blissful?"

CCPD Part II - Training

In the last post (CCPD, at last!), I left you all with the good news about my being able to sing again. I will elaborate on the process to accomplish that in another post. Let's go on with the story of the CCPD training, right now.

We started opening packages, the nurse and I - the fluid bags, and the CCPD "cassette" that has all the tubing required to accomplish the dialysis. There seemed to be miles of tubing, lots more than with manual exchanges. There was also this handy-dandy little mechanical thingamajig that we were to use to connect the tubes to the bags, and which was much safer than using our hands. I was flabbergasted when she told me we were going to use all three bags. She gave me a set of instructions on how to program the machine, which I dutifully followed, and then the machine was ready. She showed me how to work the lever on the front to insert the CCPD cassette, and then we started sorting out the various tubes attached to it. This was the drain line, that one with the red clamp was the line that went to the first bag, the next two went to any intermediate bags, and then the last tube with the blue clamp would go to the bag that would be used for the final fill.

Conveniently enough, there was a drain just at our feet, in that room that was used for CCPD training. In real life, at home, I would need to use a 12-foot drain tubing extension to drain directly into the toilet. Then we started using that little thingamajig to punch the tubes through to the bags, in order. Then it was time to "prime" the tubing - the machine would pump fluid through all tubes in use and make sure that it was all clear for fluid to flow in whichever direction it needed to. The priming takes about 5 minutes, so I started chattering (brainlessly, because I was nervous and excited). Once the machine beeped its OK, we checked to see that there was fluid to the top of the line that I would attach to my catheter - the patient line, as it is called. Then it was time to connect - and once that was done, all I had to do was hit GO. The machine drained the fluid out, pumped a new amount in, waited about 20 minutes, drained again and filled once again. Each drain-fill-dwell set is called a cycle, and for my training we would only be setting up the machine for 2 cycles, then final fill. This would take about 2 hours, during which I tried to nap, but only succeeded in dozing now and then because I would start awake each time the machine made any kind of noise.

I was wondering how the fluid in the other bags would be heated up to comfortable temperature, because only one bag was actually on the heating stand. Then as I watched the machine go through its priming phase, I got it - the first bag, being heated, would be used for the first drain/fill cycle, then while the dwell phase was going on (in this case for 20 minutes or so), the machine would mix around the fluid in the other bag(s) into the bag on top so by the time the next drain/fill cycle came around in 20 minutes, there would be fresh heated fluid in the bag on top! Neat idea, I must say. In real life, at home, my dwell time is about an hour and 45 minutes, plenty of time to heat all bags...

We finished up by 11:30am on Thursday, and I was home and online to work by 12:45pm. I didn't get to take the machine home that day because the one ordered for me hadn't arrived yet, because of weather delays in the mid-west. So I still had to come home and do my other 3 exchanges for the day. But that night was my last manual exchange - I haven't had to do a manual exchange since, and it is GRRRRRRR....EAT!

The next day, I left the house only at 7am, sure that Friday traffic wouldn't be bad at all, and I was right. I got there by 7:30am, but was left cooling my heels until 8am. This time, it was my own machine (it had arrived the previous evening), and the nurse merely watched while I went through the steps of programming the machine, and setting it up for that morning's 2 hour, 2-cycle session. She pointed out a thing or two that I missed along the way, and then started discussing emergency procedures - what to do if the power goes out, what to do if you need to disconnect right away, what if the machine shows an error, etc. And then she left me to the tender mercies of the machine, which clicked and whirred away cheerfully, draining and filling and mixing and dwelling. This time, the last bag was an Icodextrin bag, so I wouldn't have to do any more manual exchanges that day.

Once again, I was all packed up and ready to go by noon - training was over, and I could take my machine home with me. The machine itself, I put on the front passenger seat, and the whole trunk of my car was taken up with the supplies for the machine that would last me through Tuesday, which is when my month's supplies will arrive. The nurse had already called in all the changes to my prescription that would be necessary, so I wouldn't need to do anything more, just be home to receive the pallett-full of bags and tubes and cassettes and all.

I came home and promptly unloaded the car - supplies and all. 5 boxes of green-cap 6 liter bags (2 per box), 1 box of yellow-cap 6 liter bags, 1 box of pink-cap 2 liter bags (the Icodextrin, which is rated at 7.5% concentration), a few plastic bags of the tubing and other supplies necessary for the cycler. Took the machine out of the car first and lovingly laid it on the bed, while I figured out where to put it. There was really only one spot to put it in - on my left-hand nightstand. Which meant I would have to clear it out before setting everything up. I went back downstairs, and started unloading the boxes and figuring out which were the minimum supplies I would need upstairs for the night. Plopped the boxes on the stairs, ready to be taken upstairs, then sat back, absolutely pooped. Then my friend called and asked me to come over, because her 18-month-old twins were up. So of course I hurried over there, and spent a happy several hours. When I came back home, I was still pooped, and actually fell asleep on the sofa until 11pm.

After that, I still had to have dinner, so I did. Made a quick little chickpea chundal (I luuuurve those canned chickpeas, man!), had it with yogurt. High protein AND high fiber. Good, or what? :P

The next post (CCPD Part III - Setting up the machine)will have details of how I set up the machine at home.

Saturday, February 09, 2008

CCPD, at last!

This started out as one post, but it got so long that I decided to split it into two or more posts! So on with it...

Coincidentally enough, the first song I heard so very early on Thursday morning was Etta James' "At Last" - lovely lovely song, and what a voice! To make sure that I would be at the PD clinic by 8:00am sharp, I left home at the ungodly hour of 6:30am (well, aimed for 6:30 am, actually left at 6:45am, then realized I had to stop for gas. Argh!), and by the time I was really on my way, it was already 7am. I was dreading the traffic jams on the way in, which from experience I knew would be bumper-to-bumper most of the way. Didn't help that there was a traffic jam even before I reached the freeway, too early for some idiot to be out driving...

But let me start at the beginning. The week before, on Monday, I'd called the PD unit and complained that they hadn't yet called me in for CCPD training, and when were they going to? Well, Tuesday, the nurse called back and asked if I'd be available Thursday and Friday of the following week. IF I would be available? Hell, I rearranged my work life to BE available those two days! So I started counting down the days until I could have the cycler training. I didn't mind that I had to work really hard, harder than usual, in the days leading up to. I was going to have my cycler training! And I had absolutely no idea of what to expect. No idea how large the cycler was, although I knew it had to be small enough to be hand-luggage on a flight - but have you seen the size of some suitcases that people bring on flights as carryon bagagge?!!

I woke up at 5:30am that day, because I needed time to take a shower (I'd been working with my India team until almost midnight the previous night). I need roughly one hour to finish up my morning routine with shower, and I really wanted to be able to leave the house by 6:30am. I hurried through the shower, getting my dressing changed, picking out the outfit to wear that day, and was downstairs and almost ready to go by 6:!5am. I knew I needed a cup of coffee to stay awake through the drive... And by the time I finished the cuppa and responding to a couple emails, it was 6:35am. Got my socks on in record time, and was out the door. Got in the car, started it, then realized I'd forgotten my book. Run in again, get the book. Back in the car, I realized that I'd forgotten my dialysis log, so off I ran upstairs to get it. Finally, I managed to actually leave the house. Then one look at the gas gauge, and I groaned. I would have to stop to get gas, because I certainly didn't want to risk sitting in traffic all the way into Seattle with less than a quarter tank of gas.

What happened was - there was hardly any traffic on I5 heading into Seattle. I got there by 7:40am! Crazy weird, it was, because most other weekdays, traffic would be horrible. Mom, K and S would all readily testify to horrible traffic, I think. This time, in the clinic, I got the room with the bed, and there, finally, was the mysterious machine that I had been hoping would solve my singing issues. It was about 24x12x8in - about the size of 4 17" laptops stacked one on top of the other. There was a lever on the front of it, and a basic control panel, but nothing else. I couldn't see where any tubes would be connected. There was a BIG bag of solution on the machine, being warmed up - I saw that it was a 7 liter bag (picture bugging out eyes at this point). There was another big solution bag in the shelf below, as well as a regular-sized one.

Because I hadn't done my morning exchange yet (having left home at such an ungodly hour), I was getting anxious by the time the nurse came in at 8:00am. First thing I blurted out was, "I haven't done my morning exchange yet." And she said, "Good, because we are going to use the cycler to do a short cycle of 2 hours." She told me that she had a choice for me - I could entirely eliminate the daytime exchange if I used a relatively new sort of fluid, that used a different molecule (Icodextrin) instead of the regular dextrose. And the thing about this new fluid is that it NEEDS to be in the body for at least 8-14 hours to do its best work. Which nicely eliminated the daytime exchange, but it didn't solve the problem of the 2 litres of fluid that I would still have to have in me all day. I got a little upset at that point, because it meant that I still wouldn't be able to sing - I wouldn't need to do daytime manual exchanges, but I still wouldn't be able to sing.

And then my brain lit up with an idea - was there any way I could do a split exchange, that is, do a drain, go have my lesson, then come back and do the fill? The nurse said that of course I could, provided I didn't go more than 3-4 hours between drain and fill. That part was easy, because I could be at my lesson and back within an hour and a half. The not-so-easy part would be to remember to use not an Icodextrin bag the previous night, but just a simple dextrose solution bag (like my usual) for the final fill. *whack* That's the sound of palm meeting forehead - turns out I could have used this very split-exchange technique even while doing manual exchanges, so I need not have given up on singing at all! All these months lost... Oh well. But I was also literally dancing around the little room because I would be able to sing again!

And I will leave you with this happy thought, until the next installment of the CCPD training series (CCPD Part II - Training) :)

Friday, February 01, 2008

In other news...

I am finally going to get trained on the cycler - on Thursday and Friday next week. I wonder what my prescription's gonna be... As always, please remind me to post pictures once I get the machine home. Hah, who am I kidding? I doubt I'm going to post any pics of anything - promised photos of my dialysis corner (now rapidly expanding to take over my entire bedroom) notwithstanding - because I am too frigging lazy to take my camera upstairs, take some pics and upload them, then add them as links or embedded images here.

Oh I hope I hope I hope I won't have to have anything but a "keep the catheter afloat" amount of fluid during the day, so I can finally get back to doing what I have missed all these long months - SING!!

And THIS is why I didn't want to consider paying for a kidney in India...

I find the sale of human organs abhorrent - there's no way in hell I'll ever take part in it, or do anything that might possibly encourage it. There's no guarantee that the donation is voluntary, that the donor remains healthy after the kidney is removed, that there's any kind of medical followup for the donor, etc. No doubt because there's a market for these illegally acquired organs, there's a full supply chain, at the top of which are the usual suspects, and that chews up and spits out its victims, most of whom are barely literate, and who most likely don't have a clue about possible health repercussions, and are unlikely to look farther than the next meal, because of the daily scramble to make a living.

From the article:

NEW DELHI - Police said they were raiding hospitals and guest houses Monday as part of their investigation into an illegal transplant racket that removed kidneys from up to 500 poor laborers and sold their organs to wealthy clients.

Police suspect that dozens of doctors were involved in the kidney racket, which had a waiting list of some 40 people hailing from at least five countries.
... the Hindustan Times newspaper reported that those who were paid for their organs earned 50,000-100,000 rupees (between $1,250 and $2,500).

The kidney ring had a waiting list of dozens of people from India, the United States and Greece, according to the Hindustan Times. Several patients waiting for a transplant were at the facilities when police raided them Friday, but they were allowed to return to their countries without being held for questioning.

And why were the waiting recipients allowed to leave? They should bloody well be held accountable for their part in this. But oh wait - they are the ones with the money, so they get to go scot free. This makes me SO VERY ANGRY!!!

The doctors who would take part in such a thing - they are beneath contempt. I hope they are caught and punished, with a huge dollop of humiliation on top. Greedy buggers all up and down the chain... What the article I have linked to did not mention (but I heard in a radio news report of this) was that the people at the top of the chain got to sell each kidney (or other organ) at up to a 5000% markup over what the actual donor was paid.

I'd much rather remain on dialysis than take even an unwitting part in anything like this. If I can't find a donor among my family and/or friends, then so be it. I will wait. I will wait until some unfortunate accidentally dies, and their family donates the organs. And when I die, I want each and every part of my body that can possibly be used to help somebody else, to be so used, including skin.* The rest can go to a body farm or other biological research facility. I have a will and have stated as such in it.

*HAH - you didn't think of skin as an organ, did you? But it is - the body's largest! And cadaver skin can be used to save burn victims, for skin grafts, especially if the victim is burned over a large part of their body and needs large skin grafts.