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!
Subscribe to:
Posts (Atom)
