first day
so, it wasn't a bad day overall. weird but not in the ways you might expect.
I set the alarm to give myself 15 extra minutes to screw up or forget a few things. as it turned out, I walked to the top of the stairs, called down to my parents to bring me a cup of rice milk ("EXACTLY 8 oz."... wtf?) and then came back into my room to test my blood sugar -- before the shower rather than after, since I felt low.
from my perspective, about two minutes later, Mom had handed me some stuff to drink, I recall initially refusing it, drinking it, and testing my blood sugar. my memory of this is in flashes, straight out of Memento, but forward in time. I also recall calling the dialysis unit and telling them I was a bit low, and might be late.
by the clock, all of this ACTUALLY took over half AN hour. not only did I drink rice milk, but ALSO a huge glass of orange juice, a substantial amount of Gatorade, and (it looked like) half a cup of honey, some of which was still globbed all over the table when I had rejoined consensual reality a bit later.
Mom may even have found more things with glucose to pour down my throat. it's a shame I'd neglected to tell her about the three cans of regular lemon-lime soda and glucagon kit three feet away that I keep handy... um, whoops.
apparently I did indeed call the dialysis unit, started saying pretty nonsensical things to the nephrologist who happened to be there (how I got a doc instead of a nurse is odd), and my mom finally had to grab the phone from me and explain.
on its way back UP, my glucose was 36. normal is 100. I can't imagine how low it was BEFORE the forced feeding, or should I say pouring.
incredibly, I still got to Dialyis at 10:27 by my cell phone -- my appointment time was 10:45 but they had told me to arrive at 10:30. everyone seemed to know about my insulin reaction, and one nephrologist in particular, Dr. Schultz, seemed pretty amused when he came around to say hello -- I didn't know I'd actually been babbling at HIM until much later in the day when Mom filled me in on my "missing time".
the nurse, Tammy, weighed me and then weighed my shoes. this is always done before and after dialysis to determine how much fluid to take off and how much fluid WAS taken off. ironically I am retaining almost no fluid at the moment, we think, so they decided to only take off a little, and not long after we started, I asked that no more fluid whatsoever be removed -- my BP had been very low that morning, and I'd modified my usual medication as a result. Dr. Norfolk has pretty much indicates he trusts my judgment on the diuretics (halved one kind, skipped another altogether), and he's told me to hold the beta blocker on dialysis mornings (for now?)
this proved to be a good set of choices.
the nurse sat me down in the chair, which is covered with a sheet to reduce possible discomfort -- patients with high phsophorous sometimes itch (I do, but not too seriously... it apparently drives some people bonkers). it reclines and there is a footrest, in order to help with possible drops in BP. I usually find recliners uncomfortable, but these seem well-designed -- field-tested beyond belief, I suppose.
there is a TV with headphones on a swivel arm for each patient. presumably there is the same cable the inpatients get, but I'm not a huge TV watcher, especially in the late morning through midafternoon, so I expect this to be a last resort. there is a side table on the non-fistula side (for me, that's the left, so chosen because I'm left-handed) but it doesn't come up in front to provide a good writing surface -- next time I'm bring a clipboard or the like.
back to the medical part! I had gone to the pharmacy for the lidocaine-prilocaine cream my nephrologist had prescribed, but because I'd decided that once dialysis was inevitable I wanted to start AS SOON AS POSSIBLE (thus making it a routine as quickly as possible) he had a few hours to know about my decision before going off to a conference. he seemed very concerned to make sure I had all of my questions answered, had the prescription, seemed OK with everything... it just worked out to be a little rushed.
I read the directions for the cream yesterday afternoon, too late to really ask anyone to elaborate on the printed label ("Apply as directed.") or the package insert directions (something like "Apply to site an hour before procedure in a thick layer. Cover with Tegaderm until procedure."
I had no Tegaderms left around the house. how thick should the cream be? and... WHERE THE FUCK IS "THE SITE?"
sure, I had a general idea because I can feel the big purring vein and all, but apparently my answers to those questions were: too thin in some places, too thick in others, and not at all in some of the places that apparently counted.
as in: FUCK, OW. THOSE ARE REALLY BIG NEEDLES.
next time I'm gonna err on the side of globbing the stuff on next time...
what was interesting about this part was that Tammy used a little ultrasound machine to position the needle, because "your fistula is so tiny!" (then I told her how old it was and she reversed to seeming impressed) I don't know whether this is routinely necessary for being cannulated, though -- maybe a really mature fistula is so obvious that you can just stick it blindfolded...
she put tape over the arm, cautioned me not to move it too much, and gave me a folder containing a potpourri of release forms, medical forms, polivies, educational info... I actually recognized some of the material from kidneyschool.org, which was amusing.
there was plenty to sign, including the forms to apply for Medicare (dialysis patients are eligible, even if they're under 65 and not otherwise disabled... benefits are retroactive but apparentoy take some horrendous length of time to kick in). finally having this all working (rather than just hanging) will probably do both my sleep and my digestive system a world of good...
Dolly and Shiloh stopped by to say hi. they, too, had heard about my 36 blood sugar. gee, I'm famous.
I gather that it's standard to start a dialysis patient out with a 2.5 hour session, increase to 3, then 3.5, then 4, so that by next Tuesday I'll be doing regular 4-hour sessions like everyone else there. this means that for 12 hours a week I'll be plastered to that chair.
the nurse also started me out with a slow flow rate compared t what I'll eventually be getting, so as not to "blow" my fistula. I asked her what my settings were; initially she told me that there was a lot of info to digest, and t worry about it another time, but once she began to realize I was actually pretty well-informed, she relaxed a bit, but pointed out that since my flow rate won't settle down for several (many?) sessions, there's no point in knowing it.
I let it drop because I didn't want to push too hard, but I would have been curious to know where I'm starting. I'll ask to see what it was at some point when the unit is less busy. I want to know my numbers for more than curiosity's sake, though -- even the most careful dialysis nurse is a human being and can make a mistake. fortunately Tammy didn't seem offended when I explained that I wanted to be able to double check my settings, eventually.
[aside: the way the effectiveness of dialysis is usually measured is by "dialysis adequacy", or Kt/V...
t is the amount of time one sits in the boring chair, V is the volume of fluid in your body at your "dry weight" (typically 60% of that weight), and K is the amount of urea completely removed from unit volume of fluid per unit time.
K depends on the size of the dialyzer, apparently, as well as the rate at which blood passes through it. so if you think about it, my dialysis adequacy was probably really low today, with a relatively short time n the chair and slow flow rate.
and of course we may never really be able to know my true Kt/V because V, as 60% of my dry weight, is 60% of who the hell knows what.]
one of the nurses, or maybe Shiloh (?), introduced me to the patient on my right, who smiled at me pleasantly. we exchanged a few words but she was in the middle of a TV program, so I didn't bug her too much. one of the times when Dr. Schultz passed by, he introduced me to Anne, on my left -- also a diabetic, as are most people with kidney failure, I gather.
I don't think I saw any other patients within 20 years of my age. I know that there is at least one other patient near my age, but she's on a different shift, in fact I'm pretty sure I remember which one. kids and youngish adults tend to be on peritoneal dialysis) a lot more often, I think.
things I remembered to do: numbing cream, at proper time. woke up.
things I wish I'd done: applied numbing cream how and where needed. eaten a ton of sugar in my sleep. discovered the super-secret Geisinger dialysis unit "middle of the night" shift.
things I remembered to bring: tiny book of puzzles (gift from my brother Alex on Sunday), camera (ot useful this time but I want to get into the habit of bringing it), wool poncho that I can take off and use as a blanket because Mom read that you can get cold during dialysis (I did), pencils, pens, pad of paper, cell phone, cellphone handsfree kit.
things I ought to bring next time: clipboard!! cell phone charger, CD player and commonly played CDs, bottle of water (just in case, afterwards), anything else that would make this a little more amusing. oh yeah, MITTENS.
during the session I told the nurse of anything unfamiliar I felt, just in case it was early warning of a problem. from time to time three was some odd pressure a few inches above my fistula that turned slightly more painful near the end of treatment. Tammy determined that ones of the needles had infiltrated, or gone out of, the vein, but probably only briefly because there was only a little hardness at the site. she told me to ice it a few times over the next few days if I felt sore.
(it has been sore, but not enough to make me bother to get ice on another floor so far :)
she pulled the needles, applied direct pressure by hand, put on a clamp, noticed the clamp wasn't doing a good enough job (I seem to be bad at clotting, as if there weren't enough else wrong with me, hrrrmph), and applied more direct pressure by hand. truthfully I'm glad it was a human rather than a clamp for all that time because my ulnar nerves are so damaged already... if she has to run and do something, apparently I could take over if I wanted -- awkward, but I think it might be better... in a pinch.
haw.
it's standard to send a patient out in a wheelchair and have someone else drive her home the first few times until it becomes clear how they're going to feel after dialysis. I felt fine -- in fact, a little more energetic than usual once I got home, although I'm not sure whether that's statistically significant or not.
Mom took me out for coffee and a snack in the late afternoon. we had a lovely time, the coffee was pretty good, and since my BP was still running low (97/70) a little soup seemed like a reasonable choice FOR ONCE yum. during our snack, she told me what really happened during my insulin reaction -- seriously, I had no idea. she realized she had probably taken an art class once with one of the waitstaff.
I drove myself there, and went on a warm, peaceful drive through the hills afterward while chatting with Stephen on the handsfree kit. it was a beautiful afternoon and evening. and there was a new House, M.D.
things could be worse. I think the hardest trick will be to find ways to prevent boredom during those four hours.
may the transplant be soon! it would sure help to prevent things like the 36 blood sugar, too...
I hope some of you found this (incredibly long) entry interesting and informative. I wish I'd been able to read an account like this before going in this morning, one of the many reasons I'm putting together the myfistula website, no matter how slowly and painfully it is coming together...
I set the alarm to give myself 15 extra minutes to screw up or forget a few things. as it turned out, I walked to the top of the stairs, called down to my parents to bring me a cup of rice milk ("EXACTLY 8 oz."... wtf?) and then came back into my room to test my blood sugar -- before the shower rather than after, since I felt low.
from my perspective, about two minutes later, Mom had handed me some stuff to drink, I recall initially refusing it, drinking it, and testing my blood sugar. my memory of this is in flashes, straight out of Memento, but forward in time. I also recall calling the dialysis unit and telling them I was a bit low, and might be late.
by the clock, all of this ACTUALLY took over half AN hour. not only did I drink rice milk, but ALSO a huge glass of orange juice, a substantial amount of Gatorade, and (it looked like) half a cup of honey, some of which was still globbed all over the table when I had rejoined consensual reality a bit later.
Mom may even have found more things with glucose to pour down my throat. it's a shame I'd neglected to tell her about the three cans of regular lemon-lime soda and glucagon kit three feet away that I keep handy... um, whoops.
apparently I did indeed call the dialysis unit, started saying pretty nonsensical things to the nephrologist who happened to be there (how I got a doc instead of a nurse is odd), and my mom finally had to grab the phone from me and explain.
on its way back UP, my glucose was 36. normal is 100. I can't imagine how low it was BEFORE the forced feeding, or should I say pouring.
incredibly, I still got to Dialyis at 10:27 by my cell phone -- my appointment time was 10:45 but they had told me to arrive at 10:30. everyone seemed to know about my insulin reaction, and one nephrologist in particular, Dr. Schultz, seemed pretty amused when he came around to say hello -- I didn't know I'd actually been babbling at HIM until much later in the day when Mom filled me in on my "missing time".
the nurse, Tammy, weighed me and then weighed my shoes. this is always done before and after dialysis to determine how much fluid to take off and how much fluid WAS taken off. ironically I am retaining almost no fluid at the moment, we think, so they decided to only take off a little, and not long after we started, I asked that no more fluid whatsoever be removed -- my BP had been very low that morning, and I'd modified my usual medication as a result. Dr. Norfolk has pretty much indicates he trusts my judgment on the diuretics (halved one kind, skipped another altogether), and he's told me to hold the beta blocker on dialysis mornings (for now?)
this proved to be a good set of choices.
the nurse sat me down in the chair, which is covered with a sheet to reduce possible discomfort -- patients with high phsophorous sometimes itch (I do, but not too seriously... it apparently drives some people bonkers). it reclines and there is a footrest, in order to help with possible drops in BP. I usually find recliners uncomfortable, but these seem well-designed -- field-tested beyond belief, I suppose.
there is a TV with headphones on a swivel arm for each patient. presumably there is the same cable the inpatients get, but I'm not a huge TV watcher, especially in the late morning through midafternoon, so I expect this to be a last resort. there is a side table on the non-fistula side (for me, that's the left, so chosen because I'm left-handed) but it doesn't come up in front to provide a good writing surface -- next time I'm bring a clipboard or the like.
back to the medical part! I had gone to the pharmacy for the lidocaine-prilocaine cream my nephrologist had prescribed, but because I'd decided that once dialysis was inevitable I wanted to start AS SOON AS POSSIBLE (thus making it a routine as quickly as possible) he had a few hours to know about my decision before going off to a conference. he seemed very concerned to make sure I had all of my questions answered, had the prescription, seemed OK with everything... it just worked out to be a little rushed.
I read the directions for the cream yesterday afternoon, too late to really ask anyone to elaborate on the printed label ("Apply as directed.") or the package insert directions (something like "Apply to site an hour before procedure in a thick layer. Cover with Tegaderm until procedure."
I had no Tegaderms left around the house. how thick should the cream be? and... WHERE THE FUCK IS "THE SITE?"
sure, I had a general idea because I can feel the big purring vein and all, but apparently my answers to those questions were: too thin in some places, too thick in others, and not at all in some of the places that apparently counted.
as in: FUCK, OW. THOSE ARE REALLY BIG NEEDLES.
next time I'm gonna err on the side of globbing the stuff on next time...
what was interesting about this part was that Tammy used a little ultrasound machine to position the needle, because "your fistula is so tiny!" (then I told her how old it was and she reversed to seeming impressed) I don't know whether this is routinely necessary for being cannulated, though -- maybe a really mature fistula is so obvious that you can just stick it blindfolded...
she put tape over the arm, cautioned me not to move it too much, and gave me a folder containing a potpourri of release forms, medical forms, polivies, educational info... I actually recognized some of the material from kidneyschool.org, which was amusing.
there was plenty to sign, including the forms to apply for Medicare (dialysis patients are eligible, even if they're under 65 and not otherwise disabled... benefits are retroactive but apparentoy take some horrendous length of time to kick in). finally having this all working (rather than just hanging) will probably do both my sleep and my digestive system a world of good...
Dolly and Shiloh stopped by to say hi. they, too, had heard about my 36 blood sugar. gee, I'm famous.
I gather that it's standard to start a dialysis patient out with a 2.5 hour session, increase to 3, then 3.5, then 4, so that by next Tuesday I'll be doing regular 4-hour sessions like everyone else there. this means that for 12 hours a week I'll be plastered to that chair.
the nurse also started me out with a slow flow rate compared t what I'll eventually be getting, so as not to "blow" my fistula. I asked her what my settings were; initially she told me that there was a lot of info to digest, and t worry about it another time, but once she began to realize I was actually pretty well-informed, she relaxed a bit, but pointed out that since my flow rate won't settle down for several (many?) sessions, there's no point in knowing it.
I let it drop because I didn't want to push too hard, but I would have been curious to know where I'm starting. I'll ask to see what it was at some point when the unit is less busy. I want to know my numbers for more than curiosity's sake, though -- even the most careful dialysis nurse is a human being and can make a mistake. fortunately Tammy didn't seem offended when I explained that I wanted to be able to double check my settings, eventually.
[aside: the way the effectiveness of dialysis is usually measured is by "dialysis adequacy", or Kt/V...
t is the amount of time one sits in the boring chair, V is the volume of fluid in your body at your "dry weight" (typically 60% of that weight), and K is the amount of urea completely removed from unit volume of fluid per unit time.
K depends on the size of the dialyzer, apparently, as well as the rate at which blood passes through it. so if you think about it, my dialysis adequacy was probably really low today, with a relatively short time n the chair and slow flow rate.
and of course we may never really be able to know my true Kt/V because V, as 60% of my dry weight, is 60% of who the hell knows what.]
one of the nurses, or maybe Shiloh (?), introduced me to the patient on my right, who smiled at me pleasantly. we exchanged a few words but she was in the middle of a TV program, so I didn't bug her too much. one of the times when Dr. Schultz passed by, he introduced me to Anne, on my left -- also a diabetic, as are most people with kidney failure, I gather.
I don't think I saw any other patients within 20 years of my age. I know that there is at least one other patient near my age, but she's on a different shift, in fact I'm pretty sure I remember which one. kids and youngish adults tend to be on peritoneal dialysis) a lot more often, I think.
things I remembered to do: numbing cream, at proper time. woke up.
things I wish I'd done: applied numbing cream how and where needed. eaten a ton of sugar in my sleep. discovered the super-secret Geisinger dialysis unit "middle of the night" shift.
things I remembered to bring: tiny book of puzzles (gift from my brother Alex on Sunday), camera (ot useful this time but I want to get into the habit of bringing it), wool poncho that I can take off and use as a blanket because Mom read that you can get cold during dialysis (I did), pencils, pens, pad of paper, cell phone, cellphone handsfree kit.
things I ought to bring next time: clipboard!! cell phone charger, CD player and commonly played CDs, bottle of water (just in case, afterwards), anything else that would make this a little more amusing. oh yeah, MITTENS.
during the session I told the nurse of anything unfamiliar I felt, just in case it was early warning of a problem. from time to time three was some odd pressure a few inches above my fistula that turned slightly more painful near the end of treatment. Tammy determined that ones of the needles had infiltrated, or gone out of, the vein, but probably only briefly because there was only a little hardness at the site. she told me to ice it a few times over the next few days if I felt sore.
(it has been sore, but not enough to make me bother to get ice on another floor so far :)
she pulled the needles, applied direct pressure by hand, put on a clamp, noticed the clamp wasn't doing a good enough job (I seem to be bad at clotting, as if there weren't enough else wrong with me, hrrrmph), and applied more direct pressure by hand. truthfully I'm glad it was a human rather than a clamp for all that time because my ulnar nerves are so damaged already... if she has to run and do something, apparently I could take over if I wanted -- awkward, but I think it might be better... in a pinch.
haw.
it's standard to send a patient out in a wheelchair and have someone else drive her home the first few times until it becomes clear how they're going to feel after dialysis. I felt fine -- in fact, a little more energetic than usual once I got home, although I'm not sure whether that's statistically significant or not.
Mom took me out for coffee and a snack in the late afternoon. we had a lovely time, the coffee was pretty good, and since my BP was still running low (97/70) a little soup seemed like a reasonable choice FOR ONCE yum. during our snack, she told me what really happened during my insulin reaction -- seriously, I had no idea. she realized she had probably taken an art class once with one of the waitstaff.
I drove myself there, and went on a warm, peaceful drive through the hills afterward while chatting with Stephen on the handsfree kit. it was a beautiful afternoon and evening. and there was a new House, M.D.
things could be worse. I think the hardest trick will be to find ways to prevent boredom during those four hours.
may the transplant be soon! it would sure help to prevent things like the 36 blood sugar, too...
I hope some of you found this (incredibly long) entry interesting and informative. I wish I'd been able to read an account like this before going in this morning, one of the many reasons I'm putting together the myfistula website, no matter how slowly and painfully it is coming together...