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 :)
Thursday, December 27, 2007
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...
Going real-life speed now
Ladies and gentlemen, boys and girls!
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! :-)
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
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.
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
As always with a new place, I had to get lost once or twice, and I went right past the entrance, but I still managed to get there by 7am sharp. I went in, and as soon as I gave the receptionist my name, out came all the nurses in the unit - "Oh, so YOU are the poor dear - we all felt so bad that we just couldn't help you at all when you called that first time". As luck would have it, the brusque nurse who caught my first call was the one doing the flush. She kept saying "you would have been fine with a flush next week!" So anyway, she added another length of tubing to my catheter, and gave me a big fat book (basically, the course-ware for the "dialysis training" session). We were done with the flush by 9am and out the door shortly after.
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.
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 this is my third attempt at starting a blog (didn't have enough of a focused topic on the other two, which have been abandoned). This blog is going to be my personal experience of the whole dialysis thing, of which I have been much afraid for a very long time. Just that whole concept of being hooked up to a machine for my very survival. *brr. yuck*
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:
*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
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
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