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?"
Showing posts with label PD. Show all posts
Showing posts with label PD. Show all posts
Sunday, February 10, 2008
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.
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) :)
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!!
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!!
Tuesday, January 01, 2008
A link that everyone on or starting PD needs to have available
OK, so it is almost 3 years out of date, and it is only a page, not a blog, but it does have some useful information...
http://www.bryanjrollins.com/MPGN1/peritonealDialysis.html
http://www.bryanjrollins.com/MPGN1/peritonealDialysis.html
Radi's first adventure
Adventure, you ask? Yes, indeedy-doody, I reply.
As has become customary, I went to BFF CMR's house for New Year's Eve (I started the custom last year *heheh*). And we had good food, good wine and we played a fun board game, the name of which I don't remember now. But the real adventure lay in what came next: I was going to stay overnight!
What's the big adventure in staying overnight at a friend's, you might ask? Go ahead, I KNOW you're going to ask anyway. The big deal is that this is the first time I have stayed away from home sweet home for any duration longer than 8 hours, the max I can go between exchanges...
I went well prepared - well, except I didn't remember if I had taken the little baggie of extra supplies like masks, clamps and catheter caps. But I didn't have the time to turn back because I was already running late to meet J at the theater for a good bloodbath ("Sweeney Todd", in case you're interested). As it was, I made it with barely 5 minutes to spare to showtime! Was a good movie too, I must add. I had fun trying to keep up with the body count - and this bloodbath was more fun than the last bloodbath I went to see ("No country for old men"), because at least this had people bursting into good song. Some of the lyrics were so wickedly funny!
After the movie, J suggested we take a look at the view from the 28th floor of the same building (which is actually a Microsoft office location). So off we headed upstairs - the cafeteria has some really beautiful views through its picture windows AND from the balcony that runs along one side of it. For being the last day of December, it was a really mild day - we'd had bright sunshine all day, and by the time we got up to there, it was verging towards a beautiful pink sunset. And there I was on the 28th floor balcony, without needing a jacket! Of course, as soon as the sun went down, so did the temps - down to a few degrees below freezing, I think. Dunno, was in CMR's place, which like most houses other than mine, is a few degrees too warm for me.
So I didn't really know if I was going to be able to stay overnight at their house (I might have previously mentioned - J is CMR's husband :)), and I wouldn't until I checked the status of my daily solution-bag-heater bag. If I didn't have my extra supplies baggie, and if the little baggie of supplies in there was ehough to last the night and the morning, I would stay. Otherwise I would have to go back home in time for the next exchange after the last possible one with my travelling supplies. And miss the wine, conversation and just plain fun of the games (which I usually end up losing, by the way).
I took enough supplies with me to last until the midday exchange of New Year's Day. And when I got to CMR's, I found that I had been an incredibly (if unconsciously) good packer-of-supplies, because lo and behold! That little extra supplies baggie was there, tucked into the front zip. I have ABSOLUTELY no recollection of doing that before leaving home - my last memory of that baggie is that I set it out on the bed, all ready to be packed. Sometimes I feel that urge to pat my own back so much I almost pop my arm out of its socket :P
After the movie, J and I went our separate ways - me to go straight to CMR's house, him to get a cuppa joe before heading home. By the time I got to there, I was miserable - I'd finally had my flu shot for the year that morning, when I went to the doc's to get my weekly EPO shot. That, combined with the fact that I had drunk a full half-liter of water while eating most of a "medium" bag of popcorn (medium - HAH! it was ENORMOUS!), that I was mildly feverish, very sleepy and EXTREMELY bloated. I actually had to fight to keep from zoning out while driving there... a very odd feeling, that. Was never so happy to park in their driveway. Then I stood outside in the rapidly freezing weather, still sans jacket, banging on the door, loaded down with my full solution-bag-heater bag, ringing the doorbell, banging on the window. All to no avail. I could see CMR sitting on the couch with her daughter, but nothing I did could get her attention. I finally dug out my cell phone and called her - which thankfully she heard. Turns out her mother had been vacuuming, so she couldn't hear the doorbell, not over the noise of the TV and music as well.
I finally got into the house and THEN got my jacket on, because I still had one more trip out to the car to get the rest of my overnight supplies - the VERY HEAVY backpack with three solution bags in it and my overnight stuff. I lugged it into her spare bedroom, and announced that I would be staying overnight. Then I almost passed out, I was feeling that bad, so I flopped into bed for a nap. Somehow, every time I go to CMR's house, I seem to spend at least 50%-60% of my time there flat on my back, snoring my head off... I really need to break that habit. I mean, I got there at 4:45pm, was in bed for my nap at 5, woke up at 7pm, did my evening exchange, then managed to stay awake another 7 hours before succumbing to sweet slumber again (after the nighttime exchange, of course). Then I stayed in bed for the next 10 hours, only getting up for the morning exchange, before finally wandering out for my New Year's Day spinach omelette and a glorious cup of coffee :P
I hung around for a few more hours, until it was almost time for the next exchange - technically, I could have done that at their house as well, because I had all my supplies, but I really had to give myself the incentive to get home, because I had so much to do at home that I'd been neglecting during the holidays. Top of that list was cooking for the week, one of my most hated chores. So what did I do as soon as I got home? Called big sis on the way home, yakked with her for a while, meanwhile doing my exchange, made myself a VERY late lunch around 4:30pm.
Then I headed over to the Gold's Gym around the corner, feeling ever so virtuous because I was about to start a membership at the gym and an exercise program, on the first day of the new year. And what happened to that? The gym was closed, because it was New Year's Day. So much for THAT! So I headed over to a friend's house, and played with her two kids (aged 18 months and 5 months respectively). Then I came home, saw that the original movie version of "Sweeney Todd" was on cable, watched that as I did my evening exchange, then vegged out with one more movie before I ended the night. So much for cooking... HAH! Made myself a few dosas for dinner and went to bed, including the night-time exchange routine, of course.
As has become customary, I went to BFF CMR's house for New Year's Eve (I started the custom last year *heheh*). And we had good food, good wine and we played a fun board game, the name of which I don't remember now. But the real adventure lay in what came next: I was going to stay overnight!
What's the big adventure in staying overnight at a friend's, you might ask? Go ahead, I KNOW you're going to ask anyway. The big deal is that this is the first time I have stayed away from home sweet home for any duration longer than 8 hours, the max I can go between exchanges...
I went well prepared - well, except I didn't remember if I had taken the little baggie of extra supplies like masks, clamps and catheter caps. But I didn't have the time to turn back because I was already running late to meet J at the theater for a good bloodbath ("Sweeney Todd", in case you're interested). As it was, I made it with barely 5 minutes to spare to showtime! Was a good movie too, I must add. I had fun trying to keep up with the body count - and this bloodbath was more fun than the last bloodbath I went to see ("No country for old men"), because at least this had people bursting into good song. Some of the lyrics were so wickedly funny!
After the movie, J suggested we take a look at the view from the 28th floor of the same building (which is actually a Microsoft office location). So off we headed upstairs - the cafeteria has some really beautiful views through its picture windows AND from the balcony that runs along one side of it. For being the last day of December, it was a really mild day - we'd had bright sunshine all day, and by the time we got up to there, it was verging towards a beautiful pink sunset. And there I was on the 28th floor balcony, without needing a jacket! Of course, as soon as the sun went down, so did the temps - down to a few degrees below freezing, I think. Dunno, was in CMR's place, which like most houses other than mine, is a few degrees too warm for me.
So I didn't really know if I was going to be able to stay overnight at their house (I might have previously mentioned - J is CMR's husband :)), and I wouldn't until I checked the status of my daily solution-bag-heater bag. If I didn't have my extra supplies baggie, and if the little baggie of supplies in there was ehough to last the night and the morning, I would stay. Otherwise I would have to go back home in time for the next exchange after the last possible one with my travelling supplies. And miss the wine, conversation and just plain fun of the games (which I usually end up losing, by the way).
I took enough supplies with me to last until the midday exchange of New Year's Day. And when I got to CMR's, I found that I had been an incredibly (if unconsciously) good packer-of-supplies, because lo and behold! That little extra supplies baggie was there, tucked into the front zip. I have ABSOLUTELY no recollection of doing that before leaving home - my last memory of that baggie is that I set it out on the bed, all ready to be packed. Sometimes I feel that urge to pat my own back so much I almost pop my arm out of its socket :P
After the movie, J and I went our separate ways - me to go straight to CMR's house, him to get a cuppa joe before heading home. By the time I got to there, I was miserable - I'd finally had my flu shot for the year that morning, when I went to the doc's to get my weekly EPO shot. That, combined with the fact that I had drunk a full half-liter of water while eating most of a "medium" bag of popcorn (medium - HAH! it was ENORMOUS!), that I was mildly feverish, very sleepy and EXTREMELY bloated. I actually had to fight to keep from zoning out while driving there... a very odd feeling, that. Was never so happy to park in their driveway. Then I stood outside in the rapidly freezing weather, still sans jacket, banging on the door, loaded down with my full solution-bag-heater bag, ringing the doorbell, banging on the window. All to no avail. I could see CMR sitting on the couch with her daughter, but nothing I did could get her attention. I finally dug out my cell phone and called her - which thankfully she heard. Turns out her mother had been vacuuming, so she couldn't hear the doorbell, not over the noise of the TV and music as well.
I finally got into the house and THEN got my jacket on, because I still had one more trip out to the car to get the rest of my overnight supplies - the VERY HEAVY backpack with three solution bags in it and my overnight stuff. I lugged it into her spare bedroom, and announced that I would be staying overnight. Then I almost passed out, I was feeling that bad, so I flopped into bed for a nap. Somehow, every time I go to CMR's house, I seem to spend at least 50%-60% of my time there flat on my back, snoring my head off... I really need to break that habit. I mean, I got there at 4:45pm, was in bed for my nap at 5, woke up at 7pm, did my evening exchange, then managed to stay awake another 7 hours before succumbing to sweet slumber again (after the nighttime exchange, of course). Then I stayed in bed for the next 10 hours, only getting up for the morning exchange, before finally wandering out for my New Year's Day spinach omelette and a glorious cup of coffee :P
I hung around for a few more hours, until it was almost time for the next exchange - technically, I could have done that at their house as well, because I had all my supplies, but I really had to give myself the incentive to get home, because I had so much to do at home that I'd been neglecting during the holidays. Top of that list was cooking for the week, one of my most hated chores. So what did I do as soon as I got home? Called big sis on the way home, yakked with her for a while, meanwhile doing my exchange, made myself a VERY late lunch around 4:30pm.
Then I headed over to the Gold's Gym around the corner, feeling ever so virtuous because I was about to start a membership at the gym and an exercise program, on the first day of the new year. And what happened to that? The gym was closed, because it was New Year's Day. So much for THAT! So I headed over to a friend's house, and played with her two kids (aged 18 months and 5 months respectively). Then I came home, saw that the original movie version of "Sweeney Todd" was on cable, watched that as I did my evening exchange, then vegged out with one more movie before I ended the night. So much for cooking... HAH! Made myself a few dosas for dinner and went to bed, including the night-time exchange routine, of course.
Thursday, December 27, 2007
Effects of dialysis on my body
Good:
=====
1. My hair is growing like crazy, has stopped falling so much, and is back to what used to be my normal "untamed forest" (no doubt due to the far better diet I'm eating now, rich in protein)
2. I have far more energy during the day (in other words, I don't nod off every time I sit down for more than 5 minutes, like your typical nonagenarian)
3. My ankles don't disappear at the end of the day (all right, I might have a little golf ball there some days, but not always)
Bad:
====
1. I feel like a bloated snake all day.
2. I have yet to feel hungry, since the day I started dialysis - I have to force and/or remind myself to eat (and make sure I eat nutritious food).
3. I frequently feel out-of-breath because the fluid pushes on my diaphragm, not allowing me to take a deep breath.
Things that haven't changed:
======================
1. My feet hurt just as much as before - for a while, after I started dialysis, it felt like the nerve pain was getting better, but no, that was just an illusion.
2. I am still just as lazy and averse to exercise
3. I am still not losing as much weight as my doctor would like to see - still struggling to get down to my dry weight (and no, I'm NOT publishing that number for all the world to know!)
I'll add more bullet points in each section, as they occur to me :)
=====
1. My hair is growing like crazy, has stopped falling so much, and is back to what used to be my normal "untamed forest" (no doubt due to the far better diet I'm eating now, rich in protein)
2. I have far more energy during the day (in other words, I don't nod off every time I sit down for more than 5 minutes, like your typical nonagenarian)
3. My ankles don't disappear at the end of the day (all right, I might have a little golf ball there some days, but not always)
Bad:
====
1. I feel like a bloated snake all day.
2. I have yet to feel hungry, since the day I started dialysis - I have to force and/or remind myself to eat (and make sure I eat nutritious food).
3. I frequently feel out-of-breath because the fluid pushes on my diaphragm, not allowing me to take a deep breath.
Things that haven't changed:
======================
1. My feet hurt just as much as before - for a while, after I started dialysis, it felt like the nerve pain was getting better, but no, that was just an illusion.
2. I am still just as lazy and averse to exercise
3. I am still not losing as much weight as my doctor would like to see - still struggling to get down to my dry weight (and no, I'm NOT publishing that number for all the world to know!)
I'll add more bullet points in each section, as they occur to me :)
Well, the big day has come and gone
No, not Christmas, silly! December 26th. NO, not Boxing Day either. Nor the anniversary of that horrible day two years ago when the earthquake struck Indonesia, and the tsunami struck the rest of Asia. This was the day I would have my big PD tests to figure out how well the dialysis was working for me. And exactly like the aforementioned Christmas build-up, the let-down is just as bad. So what did happen, you ask?
They had me collect my bags from each exchange of the previous day, and do a 24-hour urine collection as well (and pitifully little it was too, another reminder of what my kidneys ain't doing any more). Also to make sure that the last exchange of the night should be a green bag. Dear brother, who came here specifically to accompany me to the PD clinic on this big day, toted the heavy box of used dialysate bags into the clinic. Elevators weren't working, so we took the stairs.
The nurse had me start my first exchange of the morning - but only the draining portion. They wanted me to drain as much of the fluid as possible - so this time it took me almost 30 minutes just to do that thorough drain, leaning from side to side, standing up, etc. About all I didn't do was do a hand-stand. Once the drain was done, a nurse disconnected it from my catheter and took it away for testing. Then we waited a little bit, another nurse came in with a green bag, attached it to my catheter and had me do the fill. She timed both the drain and fill - and during the fill, she had me turn on each side a few times, so the fluid would reach every nook and cranny of my peritoneal membrane. Then she immediately drained a bit of it, and took a sample, then returned the rest back to me via the catheter. At 20 minutes, she drained some more, took another sample, etc. Then at 2 hours, and at 4 hours, she took a blood sample as well, then had me do my next exchange.
This time with a red bag, because my doctor had said so the previous week, and I'd not done because I didn't want to chance having my BP drop really low (which there was a good chance it would, because the red bag pulls out the most fluid from the body) while I was alone. I wanted to do it either at the clinic or at home with K around. So red bag it was. The nurse sat by me, again recording exactly how long it took to drain the remnants of that morning's exchange, and how long it took me to fill.
Then they said - thank you very much. You can go home now. We'll send you the results next week.
HUH?! I don't get to train on the cycler this minute? I have to do the manual exchanges for the next god knows however many months? I have to go around being a bloated snake for longer? I don't get to even attempt to sing for however many more months?
I asked the nurses when was the earliest I could start training on the cycler - the answer was: earliest by early February, latest could also be end of March. ARGH! Until then, I have to do my 4 exchanges a day, no matter how my test results come out. And until next week, I won't even know if and how much I will have to carry around during the day once I do start on the cycler. I want to know RIGHT NOW! And I want to start RIGHT NOW! And that has about fuck-all impact on when I get to start the cycler training, because the nurses at the clinic are swamped - they're going to train 11 new PD patients next month, which is why the cycler training has been pushed back. Us patients already on manual PD can live another month or two doing more of the same, but the same can't be said of those new PD patients, now can it?
They had me collect my bags from each exchange of the previous day, and do a 24-hour urine collection as well (and pitifully little it was too, another reminder of what my kidneys ain't doing any more). Also to make sure that the last exchange of the night should be a green bag. Dear brother, who came here specifically to accompany me to the PD clinic on this big day, toted the heavy box of used dialysate bags into the clinic. Elevators weren't working, so we took the stairs.
The nurse had me start my first exchange of the morning - but only the draining portion. They wanted me to drain as much of the fluid as possible - so this time it took me almost 30 minutes just to do that thorough drain, leaning from side to side, standing up, etc. About all I didn't do was do a hand-stand. Once the drain was done, a nurse disconnected it from my catheter and took it away for testing. Then we waited a little bit, another nurse came in with a green bag, attached it to my catheter and had me do the fill. She timed both the drain and fill - and during the fill, she had me turn on each side a few times, so the fluid would reach every nook and cranny of my peritoneal membrane. Then she immediately drained a bit of it, and took a sample, then returned the rest back to me via the catheter. At 20 minutes, she drained some more, took another sample, etc. Then at 2 hours, and at 4 hours, she took a blood sample as well, then had me do my next exchange.
This time with a red bag, because my doctor had said so the previous week, and I'd not done because I didn't want to chance having my BP drop really low (which there was a good chance it would, because the red bag pulls out the most fluid from the body) while I was alone. I wanted to do it either at the clinic or at home with K around. So red bag it was. The nurse sat by me, again recording exactly how long it took to drain the remnants of that morning's exchange, and how long it took me to fill.
Then they said - thank you very much. You can go home now. We'll send you the results next week.
HUH?! I don't get to train on the cycler this minute? I have to do the manual exchanges for the next god knows however many months? I have to go around being a bloated snake for longer? I don't get to even attempt to sing for however many more months?
I asked the nurses when was the earliest I could start training on the cycler - the answer was: earliest by early February, latest could also be end of March. ARGH! Until then, I have to do my 4 exchanges a day, no matter how my test results come out. And until next week, I won't even know if and how much I will have to carry around during the day once I do start on the cycler. I want to know RIGHT NOW! And I want to start RIGHT NOW! And that has about fuck-all impact on when I get to start the cycler training, because the nurses at the clinic are swamped - they're going to train 11 new PD patients next month, which is why the cycler training has been pushed back. Us patients already on manual PD can live another month or two doing more of the same, but the same can't be said of those new PD patients, now can it?
Thursday, December 20, 2007
Tips and tricks
Here are a few tips and tricks I use to help me remember to:
a. Do my exchanges in time
b. Log my bags used, weight, temperature and blood pressure
#1: I've set up reminders on electronic calendars for the midday and evening exchanges
- on my office account
- on my phone
#2: I've set up reminders on electronic calendars for lunch time (30 minutes before exchange time)
- on my office account
- on my phone
#3: After my last exchange of the night, I set out a paper towel AND the thermometer on the tray
- this helps remind me to log my temperature, blood pressure and weight every morning, because I leave the thermometer on the tray while I'm doing my morning exchange...
#4: I always keep backup supplies of catheter caps, paper towels, hand sanitizer, etc within easy reach of my chair, and replenish my supplies tray as soon as it begins to get low on anything.
#5: I know how long I've been washing my hands (well, gloves, at home :P) by the consistency of the soap foam - as it gets thicker and thicker, and the bubbles get smaller, the foam starts to almost get ropy. That's when I know it's time to rinse the soap off - and most times, just as I finish drying my hands (gloves) I hear the microwave ding so I know the bag is heated and ready to go.
#6: I always have a book with me (or a book AND my laptop) so I don't get bored as I wait to either drain or fill. Or for that matter, so I don't get maudlin - too much time to think and brood otherwise, and then all I want to do is rant.
I also always have a supply of the following in the house to keep the horrible potassium/calcium imbalance cramps from killing me (or even worse, disturbing my sleep :P):
1. Orange juice
2. Bananas or oranges
3. Raisins and other dried fruits
As it so happened, I needed the orange juice last night - I woke up in the middle of the night with that "going to have cramps" feeling, so I quickly chugged down some OJ and ate several handfuls of raisins. Which successfully warded off the cramps so I slept so well I completely overslept and didn't wake up until 9:30am. So I decided to work from home - voila!
a. Do my exchanges in time
b. Log my bags used, weight, temperature and blood pressure
#1: I've set up reminders on electronic calendars for the midday and evening exchanges
- on my office account
- on my phone
#2: I've set up reminders on electronic calendars for lunch time (30 minutes before exchange time)
- on my office account
- on my phone
#3: After my last exchange of the night, I set out a paper towel AND the thermometer on the tray
- this helps remind me to log my temperature, blood pressure and weight every morning, because I leave the thermometer on the tray while I'm doing my morning exchange...
#4: I always keep backup supplies of catheter caps, paper towels, hand sanitizer, etc within easy reach of my chair, and replenish my supplies tray as soon as it begins to get low on anything.
#5: I know how long I've been washing my hands (well, gloves, at home :P) by the consistency of the soap foam - as it gets thicker and thicker, and the bubbles get smaller, the foam starts to almost get ropy. That's when I know it's time to rinse the soap off - and most times, just as I finish drying my hands (gloves) I hear the microwave ding so I know the bag is heated and ready to go.
#6: I always have a book with me (or a book AND my laptop) so I don't get bored as I wait to either drain or fill. Or for that matter, so I don't get maudlin - too much time to think and brood otherwise, and then all I want to do is rant.
I also always have a supply of the following in the house to keep the horrible potassium/calcium imbalance cramps from killing me (or even worse, disturbing my sleep :P):
1. Orange juice
2. Bananas or oranges
3. Raisins and other dried fruits
As it so happened, I needed the orange juice last night - I woke up in the middle of the night with that "going to have cramps" feeling, so I quickly chugged down some OJ and ate several handfuls of raisins. Which successfully warded off the cramps so I slept so well I completely overslept and didn't wake up until 9:30am. So I decided to work from home - voila!
The X-prize of organ replacement
How about this - here's a company that's developing an artificial wearable kidney. That's good, in fact that's great! It is a big step forwad, especially if more studies prove its efficacy and the problems aree fixed (there's only been one so far, funded by the company itself - some positive results, but also problems with the device, AFAIK).
Now how about developing an artificial implantable kidney? Especially one that doesn't need replacement more than once a decade or so, or even better, at all. I would be all over that project, really :) That's the real X-prize of organ replacement, IMO.
Now how about developing an artificial implantable kidney? Especially one that doesn't need replacement more than once a decade or so, or even better, at all. I would be all over that project, really :) That's the real X-prize of organ replacement, IMO.
Thursday, December 06, 2007
More observations about life on dialysis
So that rant in my last post, where so many of you tried to cheer me up? I've discovered the cause - I was hungry as hell that night. I didn't feel that hunger as one normally feels it (a pain in the general stomach region), because I don't, not since I've started PD. I only remember to eat before every exchange because I remember the faintness and dizziness that came over me once when I hadn't been eating right.
That was the day I filled the whole 2.5 litres, because I wasn't paying attention. So the usual feeble signals that I get from my stomach were also completely absent (that little gnawing sensation was simply not there that day). I completely forgot to have dinner. And so I had myself a huge bout of self-pity, compounded by the fact that it'd only been a few days since Amma left, so I was missing her like crazy, I hadn't yet settled into an Amma-less routine. That's where the rant came from. I've not stopped missing Amma, but I'm sloooowly settling into that Amma-less routine I mentioned.
Yesterday, I was feeling really whiny and close to tears, for no apparent reason - snapping at poor CMR even though she is likely under even more pressure than me at work, being on two projects at once. I was a BEAR all through our team conference call last night. And then it hit me - I hadn't had my dinner. Then I also realized that that vague nausea I'd had all evening was my poor stomach signaling that it had much too much acid and not enough food in it. Palm, meet forehead! I almost knocked myself out with that thwack :P
Some of the dumb things I do, I tell ya!
Now when I feel all whiny and run-down, I remember this lesson and go eat something nutritious. I have finally learned to pay attention to what my body tells me. Typical conversation:
Me: "What now?!"
Body: "Go take some Tums, dummy - I'm being eaten up with acid!"
Me: "Oh, yes, now that you mention it... I am feeling that little twinge of acidity."
And now I really have to go take some Tums.
============================================
PS: It is really amazing how much my body's internal voice sounds like big sister's :P
That was the day I filled the whole 2.5 litres, because I wasn't paying attention. So the usual feeble signals that I get from my stomach were also completely absent (that little gnawing sensation was simply not there that day). I completely forgot to have dinner. And so I had myself a huge bout of self-pity, compounded by the fact that it'd only been a few days since Amma left, so I was missing her like crazy, I hadn't yet settled into an Amma-less routine. That's where the rant came from. I've not stopped missing Amma, but I'm sloooowly settling into that Amma-less routine I mentioned.
Yesterday, I was feeling really whiny and close to tears, for no apparent reason - snapping at poor CMR even though she is likely under even more pressure than me at work, being on two projects at once. I was a BEAR all through our team conference call last night. And then it hit me - I hadn't had my dinner. Then I also realized that that vague nausea I'd had all evening was my poor stomach signaling that it had much too much acid and not enough food in it. Palm, meet forehead! I almost knocked myself out with that thwack :P
Some of the dumb things I do, I tell ya!
Now when I feel all whiny and run-down, I remember this lesson and go eat something nutritious. I have finally learned to pay attention to what my body tells me. Typical conversation:
Me: "What now?!"
Body: "Go take some Tums, dummy - I'm being eaten up with acid!"
Me: "Oh, yes, now that you mention it... I am feeling that little twinge of acidity."
And now I really have to go take some Tums.
============================================
PS: It is really amazing how much my body's internal voice sounds like big sister's :P
Tuesday, December 04, 2007
Filling and draining... filling and draining... on and on and on
*sigh* Why is it that I already feel as if I have been doing this for ever? I can't wait for the PET (Peritoneal Equivalency Test?) that will let the PD clinic know if I qualify for the night-time cycler. And more important, IF I qualify for the cycler, how much fluid, if any, I will have to fill during the daytime... If I'm VERY VERY lucky, it will only be just enough to float the catheter (barely felt); if I'm not lucky, I might still end up doing daytime exchanges... I CAN'T WAIT FOR Dec 26th!
And do you know what all this washing of hands ALL THE BLOODY TIME has done to my poor hands? My skin is cracked and peeling, and no amount of cream or lotion stops the flaking and itching. Yes, you read that right - my farking HANDS are flaking and itching (looks like I have dandruff of the hands). My solution for that is to use disposable latex gloves - I remember the PD nurse telling me that even if I use gloves, I have to treat them like my hands; in other words, even if I do wear disposable latex gloves, I still have to wash them for 2-3 minutes with antibacterial soap, use the Purell where required, etc. Fine, so what if I feel silly washing gloves - at least this will allow my skin to heal and get back to being merely dry.
In fact, by day 2 of my PD training, my hands went from being soft and only requiring lotion once daily after my shower, to looking like the nurses' - dry and wrinkled and old and needing moisturizing cream after every single exchange. It doesn't matter if the nurses' hands look old - they are in their late 50s. My poor hands have got so dry that even not-very-fine cloth catches on them (like I have miniature velcro hooks in my palm *grr*). Now I have to remember to wear gloves while:
a. Rinsing out my catheter belt
b. Doing the dishes
c. Doing anything else (except showering) that involves water
The list of things I have to do is becoming endless - as it is, it takes me 2 hours from the time I get up to the time I come downstairs for breakfast, ready to go out for the day. Roughly one hour to finish my morning ablutions, showering and replacing the exit-site dressing, and then at least another half hour to 45 minutes doing my morning exchange. I really really really REALLY resent the 1 hour and 30 minutes of lost sleep. With the cycler, I will be able to do my usual (and required) 9-10 hours uninterrupted sleep time; having to get up before 8 in the morning, EVERY SINGLE DAY, is really getting me down.
Sorry to end this post on such a downer, but I am thisclose to losing it, today! I miss Amma! And I have to wait 6 long months before she can come back. :(
And do you know what all this washing of hands ALL THE BLOODY TIME has done to my poor hands? My skin is cracked and peeling, and no amount of cream or lotion stops the flaking and itching. Yes, you read that right - my farking HANDS are flaking and itching (looks like I have dandruff of the hands). My solution for that is to use disposable latex gloves - I remember the PD nurse telling me that even if I use gloves, I have to treat them like my hands; in other words, even if I do wear disposable latex gloves, I still have to wash them for 2-3 minutes with antibacterial soap, use the Purell where required, etc. Fine, so what if I feel silly washing gloves - at least this will allow my skin to heal and get back to being merely dry.
In fact, by day 2 of my PD training, my hands went from being soft and only requiring lotion once daily after my shower, to looking like the nurses' - dry and wrinkled and old and needing moisturizing cream after every single exchange. It doesn't matter if the nurses' hands look old - they are in their late 50s. My poor hands have got so dry that even not-very-fine cloth catches on them (like I have miniature velcro hooks in my palm *grr*). Now I have to remember to wear gloves while:
a. Rinsing out my catheter belt
b. Doing the dishes
c. Doing anything else (except showering) that involves water
The list of things I have to do is becoming endless - as it is, it takes me 2 hours from the time I get up to the time I come downstairs for breakfast, ready to go out for the day. Roughly one hour to finish my morning ablutions, showering and replacing the exit-site dressing, and then at least another half hour to 45 minutes doing my morning exchange. I really really really REALLY resent the 1 hour and 30 minutes of lost sleep. With the cycler, I will be able to do my usual (and required) 9-10 hours uninterrupted sleep time; having to get up before 8 in the morning, EVERY SINGLE DAY, is really getting me down.
Sorry to end this post on such a downer, but I am thisclose to losing it, today! I miss Amma! And I have to wait 6 long months before she can come back. :(
The 5 Commandments of Peritoneal Dialysis
The Five Commandments of PD
====================
1. DO NOT drain your belly too well, for you shall suffer the agonizing cramps of gas that expands to fill the void.
====================
1. DO NOT drain your belly too well, for you shall suffer the agonizing cramps of gas that expands to fill the void.
2. DO NOT drain your belly too well, for you shall suffer the agonizing tickling and almost-pain of the catheter not floating any more.
3. DO NOT drain your belly too well, for you will have gas and fluid fighting for the limited space in your abdomen during the subsequent fill, something that can get really painful really fast.
4. DO pay attention to the fill volume, for if you fill more than required by your prescription, you will feel like a VERY bloated snake (where you would normally feel like a mildly bloated snake).
5. DO pay attention to fill volume, for if you fill more than required by your prescription, you will have no desire nor indeed room for food or drink, if you had any before.
Well, there are other things too - minor things lilke "follow infection control procedures", "always wash hands for 2-3 minutes with antibacterial soap before every exchange", "don't touch the exposed end of your catheter with anything except a Betadine swab or catheter cap with Betadine sponge", "don't get constipated", etc. Thing is, in PD training, they go over all that - din it into your head, in fact. The things I have posted above? Only experience will ever tell you that. Learn from my mistakes, do!Wednesday, November 28, 2007
2 Week Checkup
Went for my two-week checkup after starting dialysis. This time I dragged dear brother with me too, because I wanted him to meet the nurses, and ask questions and satisfy himself about leaving me alone. Poor guy had to work - he works on East Coast time when he's here, so he'd been up since 4:00am local time (he's one of those strange ones - a morning person). I was eating up the better chunk of his best productive hours, but because he can be overprotective at times, I wanted him to be really at ease about my starting dialysis, and living alone.
So he asked his questions, mainly to do with that one thing I hate above all - exercise. I'm not supposed to use the rowing machine now (not that I ever did use it on a regular basis... HAH!). So now he's going to ship the rowing machine off to his home, and get me an exercycle. Or even worse, a membership at the Gold's Gym across the street. HORRORS! :D
Amma and K dropped me off at work that day, then came back around 4pm to pick me up. I'm afraid I gave them (and CMR) a small shock because they showed up at the front door, but I wasn't there to meet them. They tried calling me, but my cell phone doesn't always pick up calls because of the abysmal reception in the guts of the building, where my little corner is. Tried again, still no me. After the third try, they called CMR, who in turn tried to call me as well. She also tried to find me online. Amma says she came in and asked the recep if she could in and check on me, but the recep could not allow that. What was I doing in the meantime, you ask?
I'd packed up my stuff - shutdown the computer, stuffed it in the bag, etc. I was chatting with another person in the same cube-farm. She was planning a trip to India, for a month, and I was busy telling her about Kaziranga National Forest, and the Gir Forest and all the stuff I could remember. I had my phone in hand all this time, mind you. I was wondering why Amma didn't call me again - they were pretty close to the office when I'd talked to her last. Finally, around 4:45pm, my phone buzzed with a text message, "Where are you?" It was from K, finally! I sent a text message back saying I'd be right there, then realized I had to head to the loo first. Did so, and my what a reception I got when I got into the car! First thing I did was call CMR to let her know I was OK, then calmed down Amma and K and told them what to do if they wanted to find me and I wasn't responding on email or phone (they're supposed to call Security and ask them to either take a look see or escort them to my desk, and back out if I'm not there).
So that's the little story for today...
Sunday, November 25, 2007
Dialysis at work
Sunday evening found me busy setting things up so I could do my lunch-time exchange at work. I put together all the supplies I'd need for the day (two clamps, fresh catheter end-caps, paper towels, Purell) and stuffed the lot into a backpack. The heating pad I wrapped around the solution bag, and put that as well into the bag. Then, even though the collapsible IV pole came with its own bag, I stuck the whole thing in and totally unbalanced the backpack. But that's the way it had to be, because there are only so many things I can hang on one shoulder - the right one bears the brunt of any load. So what do I hang on there? Handbag, laptop bag, lunch bag and now the dialysis bag.
At work that day, I thought I would be distracted, but I actually got a lot of work done. I love working with CMR because of the energy she brings to any room, but she is able to work in short bursts, get interrupted and immediately get back to the thread of whatever she was working on before the interruption. I can't do that, not to save my life. I can only look on in awe of anyone who does that. I don't like being interrupted at work because it takes me a long time to fall back into that concentrated phase where I get the most work done. However, to get back to business - CMR wasn't there to sidetrack me that day, because she was on vacation for the week. I got my loooong list of things to do that day whittled down to a surprisingly short one, mainly because she wasn't there tacking stuff on to the end as I finished up things :P
Because of my exhaustion the week before, I'd actually messed up at work - I was supposed to put a particular report on our production system so the person who'd asked for it could run it first thing in the morning (and his mornings are pretty damn early, too!) Monday. I managed to finish it up on Sunday and proudly put it on our pre-production server. I'm so used to doing that, because I HATE to put anything on our production server that hasn't been vetted by the tester. Anyway, I totally, completely forgot that I had to put that report on production, not pre-prod. Monday morning, CMR called and asked me about that report. Which is when I realized my boo-boo... I managed to smooth it over with the guy by saying I wanted our tester in India to take a look, etc. He took my explanation at face value and said he'd check the report the next morning.
Anyway, apart from that, I had no problems on Monday. As soon as I got to work, I set up the heating pad and wrapped it around the solution bag. A very noisy process, because the outer bag that holds the actual solution bag is the thickest, crinkliest plastic they could find. Luckily, people are used to odd noises from CMR's and my little corner of the cube farm (CMR has a lap band, a form of bariatric surgery, so se burps frequently, and me, with my little teeny "ow"s or big startled "OW"s because of my feet), so no one peeked over to see what the noise was. An hour or so after I set up the heating pad, I checked how hot it was - it had certainly heated up the filing cabinet that I'd set it on, but the bag itself - hmmm... not so much. That was when I figured out that this particular heating pad didn't heat equally on both sides. Maybe that's what all heating pads do - I wooden know, as the joke goes. Anyway, I changed sides on the heating pad and checked again after another hour, and what do you know - the bag was finally heating up enough so I could use it!
When it was time, I just put the whole shebang back in the backpack, picked up my laptop in the other hand, and off I went to the restroom which has that mother's room. Nary a a second glance from anyone, which is one thing I like a whole lot - people who are not nosy. Anyway, all the furniture that's in that mother's room is: 2 very low sofas and one low-ish teeny tiny side table (about a foot long by six inches wide, and standing a bit higher than my knee). Oh, and a huge baby-changing station, of course :P Unpacked my stuff there, set up the IV pole, hung the bag. Then closed the door almost to, washed my hands for the prescribed few minutes, and carefully trying not to touch any other surface without a paper towel between it and my hands, I came back into the mother's room and sat down, connected all tubing, etc. Then when it was time to drain, I sat there and watched, but there was nothing coming down that tube. Those bloody sofas were too low for me to be able to drain!
So for 10 minutes, I stood, while the fluid drained from my body (meanwhile doing fun stuff on the laptop that kept my neck and upper back muscles entertained, trying to minimize pain in the afore-mentioned areas). Luckily, standing really drains me FAST. About 5 minutes into the process, I realized I had forgotten to lock the door. Somebody actually poked their head in to see why the door was closed - WTF?! Lady, read the sign on the door - MOTHER'S ROOM! If the door is closed, it stands to reason that someone in there requires P R I V A C Y! I didn't really yell at her - I didn't have to, my expression was enough to send her right back out. And then I inched over and tried to lock the door, but I was already tethered to the one heavy bag on the floor and another heavy bag on a not-too-stable IV pole. So I carefully moved the IV pole enough so I could just reach the door lock with my fingers. Needless to say, I haven't forgotten to lock the door after that.
So - once I got to the fill process, I could sit back down (this time the low sofa helped), and I could change the angle of my laptop screen back to normal. Once my fill was done, I cleaned up my papertowels, the old screw cap and the wrapper for the new one, the crinkly crackly outer bag, wadded it all up and walked out of the room, and casually dropped it into the trash. Went back into the room and packed up the rest of my stuff. There wasn't anybody in the restroom at the time, but while I was emptying the bag/s into the toilet, I did hear someone come in. I had to babysit the entire process of emptying the bags, because the stall doors aren't close enough to the commode for me to employ my usual method (at home, I have a hanger over a door, hang my bags there, wedge the tube under the toilet seat, making sure that it won't spray anywhere outside the bowl, remove the rubber seal, and walk away). ARGH. But at least it didn't take too long - this gravity business is a good deal, I say!
After the bags were empty, I resealed up the tube with the rubber stopper, folded up the bags as small as I could, wrapped the tubing tightly around them, and dropped it into the trash, washed my hands. Walked back into the room and retrieved my stuff and walked out. Time elapsed: 45 minutes, including set up and packing. I was actually surprised to see everything still the same around me, when I left the restroom :D
The next day, I decided to try the other "mother's room" in the building - all I knew was that there was one. So I asked the receptionist, who emailed right back "Yes, there is. Room #blah, right by the kitchenette." What do you know - that was too easy. Close to my desk and all. BUT the door was locked, with an electronic number lock. Back went the email to the recep: "Number lock on door - does that mean this facility is for employees only?" And just as promptly came the reply: "No, here's the combination." So I went there, tried out the numeric key, and looked the room over. Not very big, just an office converted to two teeny nursing cubes (with phone at each desk, and a lamp), with a refrigerator in the corner. No sink. But I stowed my gear in the room, washed my hands as well as I could in the kitchenette sink, and decided to rely on Purell's claim to kill 99.9% of germs on contact. Nothing I could do about the .01% *shrug*
Did my exchange, and then realized I would have to carry back the full drain bag to the bathroom, as a separate step. Another shrug. I'd chosen to go with this room for today, after all. Packed up my gear into the backpack, with the full drain bag (and only a small, abused rubber stopper to keep the liquid in the bag until I was ready to let it out). Took the bag to the bathroom, pissed at one remove, and threw the bags away.
All right - the decision was made. I'd keep using the mother's room in the bathroom. But one of these weekends, I will have to take a chair in there (and leave a note for housekeeping not to remove it) that's at a reasonable remove from the ground. And whose height is also adjustable - high for easy drain, then low for easy fill. If I can also ask them to bring a bigger table in there... but then they're likely to point me to the "other mother's room" and ask me to use that. Besides which, I can't ask for anything, officially, I am not a blue badge (for those of you not around Microsoft people, that's a permanent employee of the Big Satan). I am but a vendor (contractor), a lowly orange-badge. I have also seen purple badges around - gotta ask what kind of employees those are. Royalty, perhaps?
Setting up for dialysis supplies
If you've paid attention to my previous posts, you'll remember that my garage was getting cluttered with stuff that we had to put together - shelves, and my laptop table. I like to keep at least the garage uncluttered, so it really grated on me, having that stuff around, not put away. Besides, we HAD to set up the shelves that weekend, because after that we wouldn't have any time before Tuesday, when I'd get 28 boxes of dialysis solution! So I dithered and dithered, and finally called CMR (my acknowledged putting-things-together expert) past 10:30pm on Friday - "Hey, I need help putting together shelves in the garage. Will you be able to come by Saturday (tomorrow)?"
What I'd forgotten was that CMR and her husband J had gone out for a formal dinner, related to J's membership in some organization or other (forget which, between them they belong to so many). So as soon as she got out, she checked her cell phone and found my message. Since I don't usually call her that late at night, she immediately called back, just this side of midnight. I assured her that I was still alive and well (and able to continue working *heheh*) - just that Amma and I needed some help. She said she would come - sometime over the weekend, probably Sunday - but she WOULD make it. So I relaxed - CMR the constructive whirlwind would take care of everything. I'm getting so spoiled! Time was I would set up the shelf without calling anyone for help, but since ever since I met CMR, I have been getting lazy and let her do stuff for me that I should be doing myself. Remind me to tell you the story of the portable AC units, sometime.
Next morning, I got a call from J - CMR had a major migraine (we'd initially bonded over migraines, I think) and wouldn't be able to do anything except lie in bed in a cool dark room - so he had been dispatched to help me with the shelves. He'd drop off their daughter E at ballet - or gymnastics, or something (like parents like daughter, E has been enrolled in so many things, I simply can't keep up) at her school in Woodinville, then come by and put the shelves up before heading back to pick her up. Even before his call, Amma had already been busy moving stuff around, clearing out the garage - this included my car as well. Since Amma won't even drive it enough to move it out of the garage, I had to do so, putting my baby out in the pouring rain. We cleared a 3x4ft corner of the garage closest to the house, and then Amma decided, as long as the garage was this empty and clear, she was going to sweep and mop the floor where the supplies SHELF was going to be.
And so we mopped the floor, with an antibacterial soap *sigh* that we'd found in my shelf of cleaning products, and watched it not dry because I believe the relative humidity that day was 100% - there was nowhere for the extra water to go! Remember I said it was POURING outside? So I got another mop, and pushed the soapy water around energetically enough that it finally started drying. I was about to head upstairs and get my hair dryer, but I guess it heard my threat :P
Just about the time that the floor was finally dry, J arrived, cup of coffee in hand, as always. Amma had set up the various components of the shelf so they were ready to be put together, so as soon as J walked in, we were ready to rock. He took a look at the instructions and deftly put together the first part - unfortunately, he'd got a few bits in upside down, so we took them all apart and J put them back together the right way, while Amma and I stood by, generally being ornamental.
In what seemed like no time at all, J had the shelves put together. Poor man didn't get in any farther than the garage that day, because as soon as the shelves were up, he noticed that it was time to go pick up his daughter. So off he went, back in the rain, not even able to refill his coffee... I tell ya, with friends like these, I could learn to be VERY VERY lazy indeed! I am already far enough down that road that my back trail is empty to the horizon. Can you believe I actually toyed with the idea of asking J to also put together the laptop table? Good thing he had to run that day :P
So now my 2-car garage is officially a VERY roomy one-car garage. Or rather, one-car-and-stuff garage.
Friday, November 23, 2007
PD Training - Day 4
Last day of training. Waited to do my morning exchange until we were in the PD unit, noted weight, temperature and blood pressure as usual. The nurse announced that today I was going to learn how to give myself EPO shots. These are weekly shots that I have been taking at the doctor's office for the past 4 years or so. I kept trying to stab myself with the needle, and I could NOT do it. The needle would get to within about 1cm of my skin before it stopped cold, as though I had an invisible shield against my skin. It isn't that the shot is painful - I know from long experience that it is NOT.
I. just. CAN'T. stick. myself. with. a. needle.
Finally, the nurse got tired of watching me try and fail to inject myself, and at the next closest approach of the needle, she tapped me smartly on the hand. Needle went in, and I was able to push the plunger, no problem. I had managed to inject myself! But the nurse agreed that I would probably not be able to inject myself with the EPO at home, so she told me to take my supplies over to the doctor's office, and have them give me the shot, as usual. Reason I now need to take my EPO supplies to the doc's office is something to do with insurance and starting dialysis. At the first mention of "insurance", I gave in to that black magic and didn't ask further questions.
When we were ready to leave, the nurses loaded up my car with supplies that would last until Tuesday, when my first dialysis shipment would come in. That's when I realized that the new supplies that had been ordered were for the 2.5 litre bags - because they had been ordered before we found out that even though I was at the weight that they usually used 2.5, I could barely funtion with 2.0 litres in me. This means that once I start using those supplies, if I want to avoid feeling like a stuffed sausage, I am going to have to pay attention to the fill process, not just take off the clamp and happily continue reading until I realize the fill bag is empty (which is a major culprit in extending my exchange times). I am going to have to keep an eagle eye on the bag and not fill more than 2 litres...
I also borrowed a collapsible IV pole from the PD unit - the one I'd ordered wouldn't even be shipped until Monday. Even now, I'm sitting here patting myself on the back because I thought about this in advance, and actually remembered to ask the nurse if I could borrow one. Best thing I could have done. Stickman Industries, the main (and as far as I know, the only) maker of Peritoneal Dialysis peripherals, must be making money hand over fist - remember I said I'd ordered $500 worth of stuff? That was one collapsible IV pole ($125), one solution-bag-heater bag ($300), and 4 tuck-away belts for my catheter ($20 each).
And loaded down with all these things, Amma and I got home, I finished up work for the day at 7pm, completed my evening exchange, and then we went hunting for a foot stool/cushion for my rocking chair. Also a lightweight rolling laptop table, for those occasions when I know I'm going to have to work upstairs. So we started at the farthest store (BigLots, if you want to know), where I'd previously got the foot cushion that I use at work to keep my feet elevated.
The intention was to go on to whichever store sold computer furniture, and get that lightweight laptop table. We didn't find the foot cushion at BigLots, but we did find THE cutest little footstool, which we got for a mere $8 - it was listed for $16, but Amma pointed out that the cushion looked a little frayed. So the guy at the checkout stand promptly said - how about if I give you a further 50% discount on that? And so I just as promptly said "Yes!" :-) And the laptop table too was a bargain - it was a $35, where it would have been at $60 at most other stores.
And since we'd found both items we needed, we didn't need to go to any other store. YAY! Have I mentioned I HATE HATE HATE shopping? Oh also, remind me to post pics, one of these days, of my little dialysis corner that is sending questing tendrils into the rest of my bedroom. *sigh* Gone are the days when my bedroom was all mine and just for sleeping. *heavy sigh*
I. just. CAN'T. stick. myself. with. a. needle.
Finally, the nurse got tired of watching me try and fail to inject myself, and at the next closest approach of the needle, she tapped me smartly on the hand. Needle went in, and I was able to push the plunger, no problem. I had managed to inject myself! But the nurse agreed that I would probably not be able to inject myself with the EPO at home, so she told me to take my supplies over to the doctor's office, and have them give me the shot, as usual. Reason I now need to take my EPO supplies to the doc's office is something to do with insurance and starting dialysis. At the first mention of "insurance", I gave in to that black magic and didn't ask further questions.
When we were ready to leave, the nurses loaded up my car with supplies that would last until Tuesday, when my first dialysis shipment would come in. That's when I realized that the new supplies that had been ordered were for the 2.5 litre bags - because they had been ordered before we found out that even though I was at the weight that they usually used 2.5, I could barely funtion with 2.0 litres in me. This means that once I start using those supplies, if I want to avoid feeling like a stuffed sausage, I am going to have to pay attention to the fill process, not just take off the clamp and happily continue reading until I realize the fill bag is empty (which is a major culprit in extending my exchange times). I am going to have to keep an eagle eye on the bag and not fill more than 2 litres...
I also borrowed a collapsible IV pole from the PD unit - the one I'd ordered wouldn't even be shipped until Monday. Even now, I'm sitting here patting myself on the back because I thought about this in advance, and actually remembered to ask the nurse if I could borrow one. Best thing I could have done. Stickman Industries, the main (and as far as I know, the only) maker of Peritoneal Dialysis peripherals, must be making money hand over fist - remember I said I'd ordered $500 worth of stuff? That was one collapsible IV pole ($125), one solution-bag-heater bag ($300), and 4 tuck-away belts for my catheter ($20 each).
And loaded down with all these things, Amma and I got home, I finished up work for the day at 7pm, completed my evening exchange, and then we went hunting for a foot stool/cushion for my rocking chair. Also a lightweight rolling laptop table, for those occasions when I know I'm going to have to work upstairs. So we started at the farthest store (BigLots, if you want to know), where I'd previously got the foot cushion that I use at work to keep my feet elevated.
The intention was to go on to whichever store sold computer furniture, and get that lightweight laptop table. We didn't find the foot cushion at BigLots, but we did find THE cutest little footstool, which we got for a mere $8 - it was listed for $16, but Amma pointed out that the cushion looked a little frayed. So the guy at the checkout stand promptly said - how about if I give you a further 50% discount on that? And so I just as promptly said "Yes!" :-) And the laptop table too was a bargain - it was a $35, where it would have been at $60 at most other stores.
And since we'd found both items we needed, we didn't need to go to any other store. YAY! Have I mentioned I HATE HATE HATE shopping? Oh also, remind me to post pics, one of these days, of my little dialysis corner that is sending questing tendrils into the rest of my bedroom. *sigh* Gone are the days when my bedroom was all mine and just for sleeping. *heavy sigh*
PD Training - Day 3
At home training. Blissful, getting up at 8am instead of 5:30. I did my morning exchange, had a bit of breakfast, and headed right back up to bed. I slept like a log, trying to catch up on all my sleep debt I'd accumulated that week and the previous week, until it was time to do my next exchange, and have lunch. Felt lower than a snail's belly because I hadn't told CMR that I was actually going to be home all day. I needed the rest, but that didn't make me feel any less slimy.
So anyway, I started work at 3:00pm. Before I knew it, it was time for the evening exchange. Brought down the time for an exchange from 1 hour and 15 minutes to just about 50 minutes. Some progress. This day, I was supposed to use only yellow bags (thanks to the almost-fainting episode the previous day).
Today was also the day that I went online and ordered PD-specific stuff to the tune of almost $500. There was a collapsible IV pole (that I absolutely need at work),a solution-warmer-in-a-bag that I can take to work and leave it plugged in, and 4belts for me to use during the day to tuck my catheter into. I have two home-made belts, made of the softest muslin, and they do the job, but they can only be backup for these belts that are MADE for the express purpose of tucking the catheter into. Unfortunately, they didn't have overnight shipping, so I would have to use my homemade belts, and use a backpack with the heating pad, to carry my PD stuff to work.
Remember I said my friend V had picked up the shelving unit for me from Costco? When he got here, I was upstairs in the middle of my evening exchange. I heard the door bell ring, then suddenly Amma's voice was GONE! I didn't know WHAT to think. Then I heard what I thought was the hot water tap in the downstairs bathroom, and thanks to all the CSI and other crime dramas that I like to watch when I do watch TV, my imagination started running wild. I yelled my loudest, and finished up the exchange in record time, then ran downstairs to see what was going on.
V had arrived, Amma had opened the garage door (what I thought was the hot water tap) and they were both outside and couldn't hear me in the slightest anyway - debating how to get the shelf box out of V's car into the garage. It was too heavy for him to lift alone, so they opened the box, and unloaded it in pieces. It just occurs to me now (as I write this), that I could have just reached over and opened the curtains to take a peek outside. I would have seen V's car, and my BP would have been OK...
So anyway, I started work at 3:00pm. Before I knew it, it was time for the evening exchange. Brought down the time for an exchange from 1 hour and 15 minutes to just about 50 minutes. Some progress. This day, I was supposed to use only yellow bags (thanks to the almost-fainting episode the previous day).
Today was also the day that I went online and ordered PD-specific stuff to the tune of almost $500. There was a collapsible IV pole (that I absolutely need at work),a solution-warmer-in-a-bag that I can take to work and leave it plugged in, and 4belts for me to use during the day to tuck my catheter into. I have two home-made belts, made of the softest muslin, and they do the job, but they can only be backup for these belts that are MADE for the express purpose of tucking the catheter into. Unfortunately, they didn't have overnight shipping, so I would have to use my homemade belts, and use a backpack with the heating pad, to carry my PD stuff to work.
Remember I said my friend V had picked up the shelving unit for me from Costco? When he got here, I was upstairs in the middle of my evening exchange. I heard the door bell ring, then suddenly Amma's voice was GONE! I didn't know WHAT to think. Then I heard what I thought was the hot water tap in the downstairs bathroom, and thanks to all the CSI and other crime dramas that I like to watch when I do watch TV, my imagination started running wild. I yelled my loudest, and finished up the exchange in record time, then ran downstairs to see what was going on.
V had arrived, Amma had opened the garage door (what I thought was the hot water tap) and they were both outside and couldn't hear me in the slightest anyway - debating how to get the shelf box out of V's car into the garage. It was too heavy for him to lift alone, so they opened the box, and unloaded it in pieces. It just occurs to me now (as I write this), that I could have just reached over and opened the curtains to take a peek outside. I would have seen V's car, and my BP would have been OK...
PD Training - Day 2
This time, I got to the PD unit at 8am sharp. First thing I did was an exchange, all by myself (with Amma looking on worriedly, following along with the instructions, as always). Then the nurse came in, and we went through a few chapters of the training manual - this was mostly to deal with what to do if I so much as SUSPECTED an exit site, tunnel or peritoneal infection.
For the latter two, I'm supposed to take bags for 2-3 exchanges, the drain bag from the suspicious exchange and page 47 of my PD guide, and head straight to the closest Emergency Room. Page 47 gives the ER staff instructions on what to do until the PD unit or one of my doctors can be contacted. The drain bag is so they have something to culture so they can tailor the treatment to the particular infection agent. Until the agent is identified, I will be on broad-spectrum antibiotics.
Which reminds me, I need to make a copy of that sheet and keep it with me always...
For an exit site infection, I'm supposed to NOT clean the site, but just put the same dressing back on and head to the PD unit as soon as possible. This is so they have something to culture, to find the infection agent and tailor treatment to that.
After the rather intense drilling I got on this, Amma and I were ready to break for an early lunch. This time, I was smarter. I ate only two idlis, and didn't try to eat any more. In fact, it got to the point that I was actually afraid to eat, because I didn't like feeling so full all the bloody time.
Before I knew it, it was time to do the next exchange and then leave. In the middle of it, the nurse said, oh-so-casually, "By the way, you are going to be doing the next stage of your training yourself, at home tomorrow." I was simultaneously elated that I wouldn't have to get up in the middle of the night, practically (which 6am is, to me), and terrified that I would make some mistake in the procedure and end up with a peritoneal infection even before finishing up my training.
We left at 2pm as usual. As on Day 1, we got home about 3:00pm, then I started work. As soon as I was done with that, we went shopping - I wanted a microwave to install upstairs, to be used ONLY for heating the solution bags, and I wanted a footstool for the rocking chair. And I wanted a couple tables and other stuff as well. What I finally got that day was just the microwave oven. I'm still not allowed to lift anything heavy, so Amma managed to get the microwave out of the car, and take it upstairs, all by herself (she wouldn't even let me help). I got to hover around her and watch her possibly strain her back. VERY frustrating.
We went to Costco and identified exactly what shelving unit I wanted for the garage. However, we couldn't lift the box, so I asked my friend V for a favor, which being the generous man that he is, he did immediately. I called Costco and got him the item number of the shelf, a general description and even the aisle number in the Woodinville Costco, so on his way home Thursday, he stopped there, got the shelf, unloaded it in my garage.
We got my little Dialysis Corner set up a bit better now, with the microwave sitting on a nightstand from Amma's room (which was the closest to "sturdy stool" that we could find at the time). There was no notable drama with the next exchange I did - the only thing was I forgot the mask, again.
For the latter two, I'm supposed to take bags for 2-3 exchanges, the drain bag from the suspicious exchange and page 47 of my PD guide, and head straight to the closest Emergency Room. Page 47 gives the ER staff instructions on what to do until the PD unit or one of my doctors can be contacted. The drain bag is so they have something to culture so they can tailor the treatment to the particular infection agent. Until the agent is identified, I will be on broad-spectrum antibiotics.
Which reminds me, I need to make a copy of that sheet and keep it with me always...
For an exit site infection, I'm supposed to NOT clean the site, but just put the same dressing back on and head to the PD unit as soon as possible. This is so they have something to culture, to find the infection agent and tailor treatment to that.
After the rather intense drilling I got on this, Amma and I were ready to break for an early lunch. This time, I was smarter. I ate only two idlis, and didn't try to eat any more. In fact, it got to the point that I was actually afraid to eat, because I didn't like feeling so full all the bloody time.
Before I knew it, it was time to do the next exchange and then leave. In the middle of it, the nurse said, oh-so-casually, "By the way, you are going to be doing the next stage of your training yourself, at home tomorrow." I was simultaneously elated that I wouldn't have to get up in the middle of the night, practically (which 6am is, to me), and terrified that I would make some mistake in the procedure and end up with a peritoneal infection even before finishing up my training.
We left at 2pm as usual. As on Day 1, we got home about 3:00pm, then I started work. As soon as I was done with that, we went shopping - I wanted a microwave to install upstairs, to be used ONLY for heating the solution bags, and I wanted a footstool for the rocking chair. And I wanted a couple tables and other stuff as well. What I finally got that day was just the microwave oven. I'm still not allowed to lift anything heavy, so Amma managed to get the microwave out of the car, and take it upstairs, all by herself (she wouldn't even let me help). I got to hover around her and watch her possibly strain her back. VERY frustrating.
We went to Costco and identified exactly what shelving unit I wanted for the garage. However, we couldn't lift the box, so I asked my friend V for a favor, which being the generous man that he is, he did immediately. I called Costco and got him the item number of the shelf, a general description and even the aisle number in the Woodinville Costco, so on his way home Thursday, he stopped there, got the shelf, unloaded it in my garage.
We got my little Dialysis Corner set up a bit better now, with the microwave sitting on a nightstand from Amma's room (which was the closest to "sturdy stool" that we could find at the time). There was no notable drama with the next exchange I did - the only thing was I forgot the mask, again.
Story of the first home exchange
I ran into the bathroom to start washing my hands (had to wash them for 2-3 minutes with antibacterial soap). Washed for about a minute before I realized - oops, forgot my face mask. Get the face mask on. Back to the bathroom and wash again... Oops, forgot to get catheter out of my clothing, so get it out, and wash again. Meanwhile, the bag was cooking in the microwave downstairs - technically I wasn't supposed to use a microwave oven that was also used for food, but it was all I had to warm the solution bag (the nurse had forgotten to give me the warming pad). Amma was in charge of that part. She brought the warmed bag upstairs and then started part 2 of the dance.
The instructions said have a paper towel in your lap to protect your clothes. Bloody paper towel wouldn't STAY in my lap - any time I moved my hands or my legs or any part of my body below the neck, the towel would slide off my lap. Keeping the rest of my body very very still, I pulled up my mask, connected my catheter to the tube from the solution bag, grabbed for the paper towel, then looked at the list of instructions to see what to do next. OK - clamped the fill bag, grabbed for the paper towel, broke green cone, grabbed for the paper towel, opened clamp and watched fluid flow down the pipes (oops - tubes) into the drain bag. You got that part about grabbing for the paper towel? OK, then just insert it at every step from now on.
Then re-clamped the fill bag, broke the blue cone, unclamped the catheter. Watched the fluid drain out from my body into the drain bag. Slowly felt the hunger again that had been suppressed. After drain was done, clamped the drain bag, unclamped the fill bag and watch the fluid go into my body. Slowly felt the hunger fade as my belly filled. After the fill bag was empty, clamped everything, disconnected catheter from tubing and put the screw-cap on the catheter. And voila! It was done.
Cleanup was easy - wrap the discarded screw-cap in the paper towel and throw it in the trash. Empty the drain bag into the toilet and throw that in the trash as well. And you know what? Now I can actually ask someone else to finish peeing for me *heheh*
A typical exchange is supposed to take about 30 minutes - this took more than an hour, mainly because of my keystone kops style of doing it. I have to say that I have brought the whole process down to about 40 minutes, start to finish, now that I have a little more experience with the process.
The instructions said have a paper towel in your lap to protect your clothes. Bloody paper towel wouldn't STAY in my lap - any time I moved my hands or my legs or any part of my body below the neck, the towel would slide off my lap. Keeping the rest of my body very very still, I pulled up my mask, connected my catheter to the tube from the solution bag, grabbed for the paper towel, then looked at the list of instructions to see what to do next. OK - clamped the fill bag, grabbed for the paper towel, broke green cone, grabbed for the paper towel, opened clamp and watched fluid flow down the pipes (oops - tubes) into the drain bag. You got that part about grabbing for the paper towel? OK, then just insert it at every step from now on.
Then re-clamped the fill bag, broke the blue cone, unclamped the catheter. Watched the fluid drain out from my body into the drain bag. Slowly felt the hunger again that had been suppressed. After drain was done, clamped the drain bag, unclamped the fill bag and watch the fluid go into my body. Slowly felt the hunger fade as my belly filled. After the fill bag was empty, clamped everything, disconnected catheter from tubing and put the screw-cap on the catheter. And voila! It was done.
Cleanup was easy - wrap the discarded screw-cap in the paper towel and throw it in the trash. Empty the drain bag into the toilet and throw that in the trash as well. And you know what? Now I can actually ask someone else to finish peeing for me *heheh*
A typical exchange is supposed to take about 30 minutes - this took more than an hour, mainly because of my keystone kops style of doing it. I have to say that I have brought the whole process down to about 40 minutes, start to finish, now that I have a little more experience with the process.
Subscribe to:
Posts (Atom)
