Saturday afternoon I was preparing to travel with Babygirl again, back to the tertiary center for a routine visit with the transplant team. Traveling in the Northeast in January requires a bit of planning. I wonder now what people did without Weather.com? I looked at the weather, both at home and our destination. Nothing looked too frightening. But then I checked the halfway point, and holy cow! Ice storm coming!
I grew up near Buffalo, so snow doesn't frighten me. But I have a VERY healthy respect for ice. It's a very bad thing to land in an ice storm in a car.
So I looked at times, predictions and probabilities, and planned on traveling down on Saturday afternoon instead of Sunday. I set up the CAPD (I tried a large Styrofoam cooler with the heating pad in it - it worked well, heating five bags without overheating) and started the first run, which starts by draining out the one hundred or so cc's of fluid left behind by last nights' machine treatment.
I can barely describe my utter horror when I saw what was draining into the bag. It was thick, bloody fluid mixed with fine swirls of white - the first time the fluid has been anything except crystal clear. I made my first freak-out call to the dialysis nurse.
"Can you read through it?" Huh?? Well, actually, no, not at all. "You need to bring her up here right now." Umm, well, actually, we were just about to start off in the opposite direction! After some haggling we finally agreed to collect some of the fluid, take it to the local lab, and get back to her with the results. In order to do this, I had to drop a liter of fluid in, let it incubate for an hour, and drain it out. THAT bag was so nasty that some of it clotted in the bottom of the bag when it settled. I drew out four syringes worth of fluid, labeled them and headed across the street to our local hospital.
I don't know how many of you are familiar with HIPPA laws, the rules protecting patient medical record privacy. They also govern what doctors are and are not allowed to do with lab tests. Even though I'm a doctor, I'm not allowed to order tests for anyone except my own patients, and I'm not allowed to look up results on tests of family members. Seriously, violating these rules could cost me my job. So I called ahead, discovered that a friend was covering the ER and asked her to order the tests and accept the results. Then I had a little trouble with the lab.
I guess it just isn't every day that someone walks in with peritoneal dialysis fluid. They had an issue with whether or not I was competent to produce such a specimen, and whether they could legitimately accept it. So from the time I discovered the ick and the time the lab started working on it, more than an hour and a half had gone by. And if those tests show infection, I have a ninety minute drive in the wrong direction ahead of me. And the initial tests take nearly an hour.
Finally they called with results - no organisms seen. White cell count low, and cell types arguing against bacterial infection.
There is a relief so profound that it is actually nauseating.
And the cause of the ick? Retrograde menstrual flow. Yup - blood going up through the fallopian tubes instead of down. So I have to wonder, are we preventing endometriosis here by flushing this stuff out? And if blood can flow UP, why doesn't the dialysis fluid flow DOWN?
When I speculated about this out loud, my nephew asked me to pass him the brain bleach.
We ended up traveling very early Sunday morning. We missed the ice storm, but we got to watch the cars sliding around on the news after we got there. The transplant team says she's doing well, see you in three months. At least by then it will be spring.
And it will be almost exactly a year.
DeeDee
Showing posts with label Continuous Ambulatory Peritoneal Dialysis. Show all posts
Showing posts with label Continuous Ambulatory Peritoneal Dialysis. Show all posts
Tuesday, January 24, 2012
Sunday, January 15, 2012
We Are Killing the Planet........
Peritoneal dialysis must be one of the most waste-producing activities on the earth. Each month, we receive an entire pallet loaded with supplies. It takes a FORKLIFT to get this stuff off the truck, and it takes a good while to get it all off the pallet and into the house, since we cannot conveniently get the forklift itself past the steps to the front porch.
This truck has to drive from wherever it loads (and I really have no idea where that is!) to us. We aren't the only people in the area who get supplies from these folks, but we are the only ones in our zip code. We won't even consider the energy it takes to make, package and ship the supplies to that point. Each pallet is then loaded, and wrapped with plastic wrap to keep our supplies on our pallet and separate from everybody else's supplies.
We use one box per day of dialysis fluid, at twenty-two pounds per box, so thirty of those with a few extra in case of emergencies. They also supply a few boxes of fluid for CAPD (at twenty-six pounds per box). We also use one cassette per night, and they come in boxes of twelve, so three per month. We also use small caps to seal off her tube after dialysis. They come in pretty small containers, less than a foot long, and light. Then there might be extra boxes of drain bags as needed and a few other smallish things. Each dialysis fluid box is VERY sturdy cardboard, about 24" x 14" x 8". We can fit two dozen of them underneath her bed, and remember it is a top bunk bed, so it's a ways off the floor.
So. The daily waste includes at least one cardboard box, sometimes as many as three. Each bag of fluid comes in a thick plastic bag (a BEAST to tear off - just ask my nephew about his emasculating experience with one especially stubborn one). Each cassette is also bagged, and each tube (there are seven per cassette) has a one inch plastic cap. We have to clean everything with bleach, so add a weekly gallon bottle. Then there are the surgical masks we use. I have to wear one to set up, and Babygirl and I both have to wear them when we hook and unhook her from the machine. I do tend to wear mine more than once, and so does she, but one sneeze and you're DONE LOL.
The rules about what can be recycled are simple. If it has been exposed to her body waste (cassette and tubing, face masks, and drainage bags and tubes if we use them) or has been filled with dialysis solution (the dialysate bags, even though they remain sterile), it cannot be recycled. We can (and do) recycle the boxes and wrapping bags.
I have two kitchen-sized trash cans in Babygirl's bedroom, both black to match the decor. One is for recycling, and one for trash. I empty the trash can at least once a week, and the recycling, twice. The boxes are broken down separately.
Then there are the other cleaning supplies. Because of the coming transplant, we are to keep her room as clean as possible. I have canisters of Clorox wipes everywhere, where once I would have used reusable rags. We have liquid antibacterial soap where once I would have used bar soap. I have purchased a swiffer-style mop that has disposable antibacterial wet pads for our floors because traditional sponge mops breed germs. And let's not forget the trash bags.
One place I was safely able to get away with staying a bit green was by purchasing several dozen white washcloths to use for drying our hands after the two minute hand scrub. We are supposed to use paper towels, but the center okay'd these as long as we bleach them. Oh, add one extra load of laundry done with hot water. Ah, yes, and let's mention the hit our electric bill takes from running the dialysis machine all night, or alternatively, a heating pad for CAPD.
It's one more small view of the fallout from this disease.
DeeDee
This truck has to drive from wherever it loads (and I really have no idea where that is!) to us. We aren't the only people in the area who get supplies from these folks, but we are the only ones in our zip code. We won't even consider the energy it takes to make, package and ship the supplies to that point. Each pallet is then loaded, and wrapped with plastic wrap to keep our supplies on our pallet and separate from everybody else's supplies.
We use one box per day of dialysis fluid, at twenty-two pounds per box, so thirty of those with a few extra in case of emergencies. They also supply a few boxes of fluid for CAPD (at twenty-six pounds per box). We also use one cassette per night, and they come in boxes of twelve, so three per month. We also use small caps to seal off her tube after dialysis. They come in pretty small containers, less than a foot long, and light. Then there might be extra boxes of drain bags as needed and a few other smallish things. Each dialysis fluid box is VERY sturdy cardboard, about 24" x 14" x 8". We can fit two dozen of them underneath her bed, and remember it is a top bunk bed, so it's a ways off the floor.
So. The daily waste includes at least one cardboard box, sometimes as many as three. Each bag of fluid comes in a thick plastic bag (a BEAST to tear off - just ask my nephew about his emasculating experience with one especially stubborn one). Each cassette is also bagged, and each tube (there are seven per cassette) has a one inch plastic cap. We have to clean everything with bleach, so add a weekly gallon bottle. Then there are the surgical masks we use. I have to wear one to set up, and Babygirl and I both have to wear them when we hook and unhook her from the machine. I do tend to wear mine more than once, and so does she, but one sneeze and you're DONE LOL.
The rules about what can be recycled are simple. If it has been exposed to her body waste (cassette and tubing, face masks, and drainage bags and tubes if we use them) or has been filled with dialysis solution (the dialysate bags, even though they remain sterile), it cannot be recycled. We can (and do) recycle the boxes and wrapping bags.
I have two kitchen-sized trash cans in Babygirl's bedroom, both black to match the decor. One is for recycling, and one for trash. I empty the trash can at least once a week, and the recycling, twice. The boxes are broken down separately.
Then there are the other cleaning supplies. Because of the coming transplant, we are to keep her room as clean as possible. I have canisters of Clorox wipes everywhere, where once I would have used reusable rags. We have liquid antibacterial soap where once I would have used bar soap. I have purchased a swiffer-style mop that has disposable antibacterial wet pads for our floors because traditional sponge mops breed germs. And let's not forget the trash bags.
One place I was safely able to get away with staying a bit green was by purchasing several dozen white washcloths to use for drying our hands after the two minute hand scrub. We are supposed to use paper towels, but the center okay'd these as long as we bleach them. Oh, add one extra load of laundry done with hot water. Ah, yes, and let's mention the hit our electric bill takes from running the dialysis machine all night, or alternatively, a heating pad for CAPD.
It's one more small view of the fallout from this disease.
DeeDee
Tuesday, November 8, 2011
Week Twenty-nine.....Taking It On the Road.....
This past weekend Babygirl and I took a road trip to New York City to visit her big sister. It's about a four hour drive one way. The purpose of the visit was to take Big Sis some furniture, since her first "Big Girl" job hasn't yielded a paycheck yet, and she's tired of sitting on the floor to watch TV! So a good friend donated a couch, and we loaded up a bookshelf with it in the back of the big van and off we went.
Now in order to do this type of thing we have to plan a bit. We try really hard to be compliant with our baby's medical care. After all, if we aren't compliant, they'll refuse to give her a new kidney - no point in giving them to people who can't or won't follow directions! The dialysis machine is pretty fragile, not to mention that it's surprisingly heavy for its size, so I have no desire to take it along anywhere. So that takes us back to manual gravity dialysis, more commonly known as Continuous Ambulatory Peritoneal Dialysis (CAPD).
CAPD can be done a couple of different ways, but as the title suggests, it is meant to be done while the patient is up and about, and it is supposed to run all the time. In our case, we use an IV pole with a scale attached to measure 1200 cc's of fluid into Babygirl's PD catheter. Once the fluid is in, she gets disconnected from the pole and bag and can go whereever she wants and do whatever she wants. After an hour and a half she comes back, gets hooked up to drain out THAT fluid, fresh fluid is put in, and we repeat the cycle five or six times. This adds up to a lot of time! The dialysis machine does exactly the same thing, but it does it automatically while she sleeps.
So for this road trip, I filled her up with fluid while we were packing. She was due for her next exchange 45 minutes after we hit the road, so we pulled off into a truck stop. We have a big van, usually 8 passenger (could be 11) but right now all the benches are out so we can transport the couch. but hey! couches are comfy, so we set up shop in the back of the van. Up goes the IV pole, out comes the dialysis fluid exchange system. And THAT's when I realized that I forgot ONE little detail.
The dialysis machine has a warmer. The five liter bags that we use with the machine are heated to body temperature automatically, and pretty efficiently. I'm supposed to heat travel bags before I go, using ordinary heating pads (which are incredibly INefficient) and store them in an insulated bag to keep them warm. And I forgot. Now it's not actually harmful to use cool fluid any more than it is harmful to drink ice water. But it is, according to Babygirl, uncomfortable. We learned THAT on our last road trip. So I felt pretty bad about forgetting, especially since we were committed to doing six exchanges! Well, no going back now! Let's do it.
God bless Babygirl. She dealt with the cold fluid with good grace and a hot drink from the truck stop. But do you remember me mentioning her practical common sense? "Mom, can we put the next bag near the heater back there?" Well, DUH. Of course we can. Actually, I put the next two bags in front of the heat vent, packed my coat over them, and by the time we were due for another exchange they were nice and warm!
I'm not sure, but I don't think many people manage four exchanges on one road trip, each in a different state each time. Oh, and by the way - you get some interesting double-takes from people when the look into your lighted van and see a kid hooked to an IV pole.
DeeDee
Now in order to do this type of thing we have to plan a bit. We try really hard to be compliant with our baby's medical care. After all, if we aren't compliant, they'll refuse to give her a new kidney - no point in giving them to people who can't or won't follow directions! The dialysis machine is pretty fragile, not to mention that it's surprisingly heavy for its size, so I have no desire to take it along anywhere. So that takes us back to manual gravity dialysis, more commonly known as Continuous Ambulatory Peritoneal Dialysis (CAPD).
CAPD can be done a couple of different ways, but as the title suggests, it is meant to be done while the patient is up and about, and it is supposed to run all the time. In our case, we use an IV pole with a scale attached to measure 1200 cc's of fluid into Babygirl's PD catheter. Once the fluid is in, she gets disconnected from the pole and bag and can go whereever she wants and do whatever she wants. After an hour and a half she comes back, gets hooked up to drain out THAT fluid, fresh fluid is put in, and we repeat the cycle five or six times. This adds up to a lot of time! The dialysis machine does exactly the same thing, but it does it automatically while she sleeps.
So for this road trip, I filled her up with fluid while we were packing. She was due for her next exchange 45 minutes after we hit the road, so we pulled off into a truck stop. We have a big van, usually 8 passenger (could be 11) but right now all the benches are out so we can transport the couch. but hey! couches are comfy, so we set up shop in the back of the van. Up goes the IV pole, out comes the dialysis fluid exchange system. And THAT's when I realized that I forgot ONE little detail.
The dialysis machine has a warmer. The five liter bags that we use with the machine are heated to body temperature automatically, and pretty efficiently. I'm supposed to heat travel bags before I go, using ordinary heating pads (which are incredibly INefficient) and store them in an insulated bag to keep them warm. And I forgot. Now it's not actually harmful to use cool fluid any more than it is harmful to drink ice water. But it is, according to Babygirl, uncomfortable. We learned THAT on our last road trip. So I felt pretty bad about forgetting, especially since we were committed to doing six exchanges! Well, no going back now! Let's do it.
God bless Babygirl. She dealt with the cold fluid with good grace and a hot drink from the truck stop. But do you remember me mentioning her practical common sense? "Mom, can we put the next bag near the heater back there?" Well, DUH. Of course we can. Actually, I put the next two bags in front of the heat vent, packed my coat over them, and by the time we were due for another exchange they were nice and warm!
I'm not sure, but I don't think many people manage four exchanges on one road trip, each in a different state each time. Oh, and by the way - you get some interesting double-takes from people when the look into your lighted van and see a kid hooked to an IV pole.
DeeDee
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