Wednesday, November 28, 2007
2 Week Checkup
Going real-life speed now
That was the last of my stored-up posts. Posts are now going to be in real-time, and may not be as frequent or nearly as long, given my schedule and my known propensities for sheer laziness. Be warned! :-)
Sunday, November 25, 2007
Dialysis at work
Setting up for dialysis supplies
Friday, November 23, 2007
PD Training - Day 4
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
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
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
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.
PD Training - Day 1
My PD training began the next Tuesday - I was to show up at the PD unit at 8am sharp. Amma and I got there at 8:15am *Indian Standard Time, heheh* Anyway, the nurse doing my training was very nice about it and didn't mind that we were late.
We started off with the usual round of signing documents - luckily I'd signed most of them back when I had my first flush, so that made up for my tardiness that started the day. There were basically three strengths of dialysis fluid - 1.5%, 2.5% and 4.25% dextrose (or the yellow, green and red stoppers at the end of the tubes). Yellow pulled the least fluid from the body, and red the most - like the goldilocks story, there was one that was just right. We used the green bags that day.
The fluid has to be at close to body temperature when it goes in, otherwise the results are extremely uncomfortable cramps, and inefficient dialysing (too hot OR too cold). In the PD unit, they had these multiple-bag warmers, but out in the real world, I would need a microwave at home and use a warming pad to heat the dialysate at work. I would also need to fill out a daily log of the bags I used, my weight, temperature and blood pressure after the first exchange of the day, which had to be turned in at the end of the month.
Then it was time to do my first full exchange. The nurse showed me the exact process, then I had to do it again - 5 more times that day! After the first one, she always had me do them by myself, because after all, I had to get used to doing them by myself. At the end of exchange #1, I felt b-l-o-a-t-e-d. Only to be expected, after all, because I had 2 litres of fluid sloshing around in my belly.
Now I truly learned what it was like to be a (smallish) snake that had just swallowed a (largish) goat whole. But I didn't get the full effect of it because I was sitting. I was really really uncomfortable for the 30 minutes between the first and second exchange. At the second exchange, I got increasingly comfortable while the fluid drained, but by the time the fill bag was empty (i.e., the next lot of fluid was in me), I felt the same as before.
Then the nurse declared that it was time to break for lunch. Amma was pretty much famished by that time, but I hadn't felt the least twinge of hunger (and I told the nurse so). She said that was the fluid pushing on my stomach, which dulled the pangs thoroughly,so the next time and until my body adjusted to the extra fluid, I would have to fill only1.5 litres, because I needed to be able to eat. Glory be!
In the exhuberance of the thought of only 1.5 litres of fluid to be filled, I ate 4 whole idlis (a bit less than my usual of 4 regular + a few little ones). Big BIG mistake. Right there I came face to face with the undeniable fact - I simply couldn't eat as much as I had always eaten, at any one sitting! I would have to do 6 small meals a day instead of 2-3 big ones (as I had been wont to do).
Exchange #3: When I had finished draining, I was finally able to breathe freely again. Unfortunately, I had to do the fill part of the exchange, and even though it was "only"1.5 litres, because I'd had a full breakfast I was back to bloated snake again. The irony of it - now I could eat all my fave foods, but I didn't WANT to eat anything. GAH!
Exchanges #4 went pretty tamely... Except that at the end of #4, I was feeling VERY lightheaded and woozy. My blood pressure had dropped quite dramatically, because of all the extra fluid that had drained out with the dialysate. So it was feet up and head down - amazing what that doctor's office chair can do - it can recline just enough to put your feet up, or it can recline flat and beyond until you're practically upside down. Amazing. So the nurse matter-of-factly said that I should use the yellow bag at home that night, instead of the green.
"At home? Tonight? *gulp*." I was supposed to do one final exchange at bedtime, all by my lonesome. Without the nurse along to hold my hand.
I would have to change my feeding habits of the past 7 years too - for such a long time I'd been watching my protein and potassium (making sure not to have too much); now those instructions were overturned. Instead of a paltry 38gms of protein a day, I now had to eat up to 100gms, at least, each and every day. And the potassium restriction was also gone - I could eat potatoes again! YAY! And then the other shoe dropped - because the dialysate essentially worked by exchanging dextrose molecules for whatever was in my blood - I had to eat a low-carb diet. Potatoes = major carb, therefore that had to be fairly limited, still. :(
After I'd had a little nap, we were ready to leave. I stood up, and learnt a whole new meaning of discomfort - my whole abdominal area ached like I'd been doing continuous pull-ups and crunches for the past 5 hours. The nurse said it was probably because my abdominal muscles were also trying to compensate for the weight and volume of the fluid.
We left the PD unit at about 2:30pm, finally - got home at 3:00pm. On the dot at 2pm, CMR had called to find out what I was doing. So soon's we got going, I called her from the car, and let her know that I would be online at about 3:15pm. That was what she had been waiting for, because she had to leave early that day, and she wanted to debrief me on the happenings and emergencies of the day. Which she did, in detail. So soon's I got home I had to log in to work even though ALL I wanted to do was take a looong nap. Then it was 4 hours of intense work. By 7pm I was POOPED!
The PD unit had loaded us down with solution bags, face masks and clamps so I would have everything I needed for the home exchange. I already had the antibacterial soap and waterless hand cleanser at home. As soon as I was done with work, Amma and I had to set up my little Dialysis Corner, upstairs in my bedroom. We took the rocking chair upstairs and set it up as the core around which to add all the other stuff. Moved all the little lightweight stools upstairs, at least until we knew how many I would need. We found that I needed a total of 3, so the others have come back down.
Thursday, November 22, 2007
Peritoneal Dialysis Training Unit
A flush is basically a mini-dialysis session, but the difference is that they only leave the fluid in for about 5 minutes (the procedure is to drain any fluid from the belly, let in about a quarter of the dialysis bag, let it out, rinse and repeat until the fill bag is empty, and the drain bag is full.) With each drain, I kept feeling tireder and sleepier, which I initially thought was because of my lack of sleep; but by the time she finally drained the fluid, I got extremely woozy (which got my mom extremely worried), to the point that I could not even stand without support - but that passed in a matter of minutes. The nurse didn't seem to be worried about that at all, so I decided not to be worried either.
I made an appointment for the next flush a week from then, and walked out a happy camper - at least I knew that the catheter was OK, and I had my bag of supplies in hand to change my dressing every day. Oh did I forget to say - the PD nurse removed the original dressing, applied another while showing me how to every step of the way, and handed me that box of supplies, along with instructions to call my nephrologist and get a prescription antibiotic cream. As soon as we got back to the car, my mom and I fell on our packed breakfasts (yummm... idli and molagapodi)and polished them off before we tried to leave.
I came home, sat back down to work for a few hours - at home, I work in the living room, sitting comfortably in my recliner, with light-weight stools around to hold the laptop, my phone, a bottle of water, maybe a little something for me to snack on,etc. I also have my handbag and laptop bag within easy reach, sitting down. So anyway, I looked up from work, set the laptop aside because Amma had been calling me quite a few times to come sit down for dinner. Soon's I stood up, I felt a cold chill in the general vicinity of the surgical incisions - sure enough, my dress felt a little damp in the general abdominal region. I put it down to sweating from the heat of the laptop.
Come the weekend, I was still feeling damp every time I sat down for a longish bit,so finally Sunday evening, I called the PD unit - the nurse on call was very nice and gentle. I told her about the leaking, and also mentioned that I wasn't in any pain or seeing any signs of infection. She told me to call the PD unit again the next morning (Monday, in case any one's lost track) and talk to the nurses again. I promptly offered to be AT the PD unit at 7am Monday, when they opened. She sounded a bit dubious about that, but agreed that it might be a good thing for me to do so. So when I got there that morning, I totally didn't expect the slightly amused look on every nurse's face. The first available nurse sat me down, took a look at my dressing and said, "oh yeah, that flush last week was definitely too soon - your catheter incision hasn't healed as much as it should. There's no way we are going to be able to start your training next week!" At which I totally panicked (yes,AGAIN), because I was going to be in NY! With my family! My sister and b-i-l are flying in! So they said, OK - we'll start the week after. That should give the incision time to heal better.
I was scheduled to see the surgeon for my follow-up that week, as well. When I mentioned the leaking to her (of course, it had stopped by Monday morning when I got to the PD unit), she was a bit concerned, and insisted that I come see her as soon as I got back from vacation. Then I was free to go - this had been a very short, flying visit - I was in and out in less than half an hour. Needless to say,my appointment at the PD unit to flush the catheter that week was cancelled. I was told to get an appointment at the PD unit for the week after my vacation. And I duly did.
Thursday of that week (I was scheduled to fly out to NY on Saturday), I got a call from the PD unit that my training had been scheduled for the week after - I was to show up at the unit from Tuesday to Friday, for 5-6 hours a day. Panic mode, again,"Omigod - 4-5 days, 5-6 hours a day?!! In succession?!! I can't possibly disappear from work for YET another week, right after my vacation - I need to keep my job!"
So the scheduling nurse said "OK, someone from the unit will contact you again later".Later was Friday afternoon - the first nurse (the not so bad one from earlier) called,sounding faintly irritated by my rescheduling request. We rescheduled for the week after, and everything was hunky dory. Well, I still had to tell my project manager, CMR, that I was going to have to disappear for that week of training.
Needless to say, CMR was NOT pleased. We worked out that the best way to work around this was for me to go to the training in the morning, but since I would be out of training by about 2pm, I should work from home, covering the project, from 3pm until at least 7pm. This was not going to be easy. In CMR's defense, I have to say that she had been very understanding about my doctor visits and strange schedules for a whole year before that. This was truly a case of immovable object meets irresistible force (project schedule vs. keep-me-alive schedule). Did I also mention that CMR is my BFF - best friend forever - to borrow a term from the revolting Paris Hilton? We just "clicked" from day one that she joined the project, so much so that another guy who joined the same as she did actually complained that I liked her better than him!I didn't know anyone bothered about that kind of stuff after middle-school. Needless to say, we ignored him :)
But this is the PD story.
One week later, after a good trip to NY, I showed up at the surgeon's office for my appointment. And waited. And waited. This WOULD be the day I forgot to bring a book to read. After about 45 minutes of this, I gave in and called my PM - told her I'd be even later than expected (and felt the ice crackling in my ear - I hadn't even been to work yet after vacation, even though I'd looked at email from home that morning).Finally, the surgeon whizzed in, took a look at the various incisions, whizzed right back out - all in less than 5 minutes, and told me that everything looked good, but she'd leave the stitches in for a just a bit longer (the nurses at the PD unit would take them out). So off I toddled to work - this time the doctor's office visit had taken almost 90 minutes.
Two days later, Wednesday at 8am, I was at the PD unit for another flush - this time there were no issues, and they finished off the flush in a very short time. Fortunately there were no issues with the catheter. I innocently mentioned to the nurses that the doctor said the PD nurse would remove the stitches. And before I could say anything more, they snipped off the stitch! I'd wanted to add - the surgeon said I'd better keep it in until I start the PD training. Oh well, what the hell. *shrug*
Dropped Amma off at home, and headed to work -I was at work by 10:30am, which isn't bad, considering the long distances involved.
Chronicals of the PD warrior
So the whole saga started more than 7 years ago when I received the bombshell news that my kidneys were failing, and that I would be on dialysis within 5 years or so (as some you who know me may have noticed, that "or so" has been stretched to two whole years :)).
My choices were:
- Peritoneal Dialysis (4 times a day) - best option
- Home haemodialysis (8-10 hours every night) - next best option
- Haemodialysis at the dialysis clinic (2-3 times a week)
- Er... let's leave that be for the next 30-odd years at least, shall we?
- Me alive
- With major organs fairly undamaged
*TMI Alert! People who are squeamish about bodily functions and fluids had better skip to two paragraphs down!*
36 hours post surgery - no bowel movement. 48 hours - still nothing. I was about to give in and call the doc, even though it was a weekend. Then, I felt that urge... but while the spirit was urging, the flesh was totally on strike, refusing to pass that huge rock of shite. After a bit of unadvised pushing, out came a big lump, along with a generous amount of blood from the straining. Did I mention said lump felt like a prickly pear, coming out? All the pain I was feeling from that point on was due to my poor abused shithole.
So, for 10 days after, going to the bathroom was a process fraught with pain (and the memory and anticipation thereof) - until my backside healed. I had my "bathroom book" at hand each time, and a worried mother who never failed to ask after my shithole. And I finally understood why people kept books in the bathroom - reading helps mitigate the pain of constipation. The day the bathroom book went away, we had a celebration! :D For those with chronic constipation - my heart goes out to you!
TMI Alert over!
Getting back to the topic at hand - the implanted catheter is just a simple soft plastic tube coming out of my belly. For one week after the surgery, the whole shebang remained untouched - my surgeon had made bloody sure that the whole catheter was properly strapped down - so much so, that when the time came to remove the original surgical dressing, the nurse almost had to resort to scissors (and this from a PD nurse who is all too aware that ALL sharp objects are a BIG no-no anywhere near the catheter). Which brings me to the Peritoneal Dialysis Unit. Of which there is only one in the entire Puget Sound region (or something like that) - it does mean that I have to drive into bloody downtown Seattle from my nice comfy digs WAY far away from the hustle and bustle of the city. That drive takes me an hour, door to door - when I can take advantage of the carpool lane into Seattle. I shudder to think of how long I'm going to be stuck in Seattle traffic once Amma leaves, and I can no longer use the carpool lane. :{
My nephrologist told me - oh, just call the PD unit a day or two after your surgery, they'll know what to do to take care of the catheter. This, after she had dinned into me that the catheter absolutely HAD to be flushed at least once a week, otherwise it would clog up, necessitating another surgery to clear it (and this may make PD out of the question because of scar tissue formation, etc). So I dutifully called the PD unit the day after the surgery. Only to be told "oh, we don't have your paperwork so we will likely only be able to get you in sometime the week after next" - and that was it. The nurse who talked to me that day sounded very brusque and totally unfeeling (I found out later that she isn't anywhere near as bad as she sounds). So I called my nephie's office IMMEDIATELY - she calmed me down, and said she'd send the paperwork immediately. This was on Friday.
Monday - I dutifully waited for the call from the PD unit. No call that day. So bright and early Tuesday, I call them again - have you got my paperwork? Can I come in this week? And they say, "No, you don't exist in our system, and can't until we get your paperwork from the doc's office, along with a blood workup. If you're going in to the doctor's office this week, have them draw that and send it off to the lab, then give us a call - we should be able to fit you in sometime next week." Again, I totally panicked, called my nephie's office - she said "Oh, I'm watching that paperwork go through the fax machine right now. Do you want to come in for your blood work at the same time as your EPO shot?" Man, you could have cooked an egg on my head,that's how FURIOUS I was; absolutely fuming! I almost screamed at her: "But YOU were the one who told me I HAD to get the catheter flushed at least once a week, and because of the lack of paperwork the nurse at the PD unit said she couldn't help me at all until probably the week after! What happens to the catheter?" I was thisclose to crying by then. "OK - does the medical assistant have time to draw my blood today? Tell me when, and I will be in."
So I went in that day, had my blood draw, and asked the doc why they hadn't sent the paperwork until the last minute. She wouldn't answer, just said "they have it now, so try giving them a call again in a couple days." I was still mad as hell, but I've made a habit of being nice to doctor's office folks, so I was still polite. Yoicks, but I think my mother learnt a few swear words that she was unfamiliar with, on the drive back home. So Thursday, bright and early, there's a call from the PD unit - "Can you come in at 7am tomorrow?" And my answer was - "Of course! Whatever time you tell me to be there, I'll be there!"
Anyone who knows me knows that I am NOT a morning person - I am an inveterate night owl who loves her sleep. So agreeing to be there at 7am was a sacrifice for me :P