Thelma and Louise Get Some Much Needed Rest
So far, I've been on dialysis for a little over a week now. Last Tuesday, Feb. 31, I went to my training session and "passed" with flying colors. Yay!!! Who knew that I would end up learning so much about asceptic technique and medical procedures!
That evening I went home with my machine and was ready to get started. I got this nifty cart from Ikea for a great price, and it's PERFECT for holding all of my meds, gauze, tape, catheter caps, and extra materials. The cycler machine fits perfectly on it, and because it has wheels, I can wheel it into the living room or kitchen if I really want to, though I usually just hang out in the bedroom when I'm on the machine.
My treatment process is about 9 to 9 1/2 hours long, and I have to do it EVERY day. That's one of the components of PD. Your regular kidneys are working 24/7, so PD tends to be more natural since you do therapy every night. With hemodialysis, you do therapy 2 or 3 times a week for a few hours, so it can be much harder on your body and much less natural since the toxins have so much time to build up in your system. Of course, the downside of PD is that there is never a break. I'm learning to adjust to my new routines, though. Each evening, we get home around 5:30 or 6. At that time, I set up my machine.
Each night, I use 2 bags that are 6 liters. Over the 9 hours, I have four exchanges of 2.5 L. Basically, the pattern is as follows:
Step 1: Fill peritoneum with 2.5 L of dialysate solution.
Step 2: Fluid "dwells" in my abdomen for 1 hour and 40 minutes. During this time, the toxins in my blood are pulled through the peritoneum membrane (like coffee through a filter) and into the solution. Toxins and extra fluid are attracted to sugar, so the dialysate solution is dextrose-based. There are several concentrations, depending on how many toxins need to be removed. Currently, I use 1 2.5% bag and 1 1.5% bag. Because the dialysate has a higher concentration of sugar than my blood, the toxins are attracted to the solution, leaving my bloodstream.
Step 3: The used dialysate is drained from my belly. I have a long tube that runs directly into the bathtub drain, or I can use a big bag and drain it in the morning.
Steps 1-3 are then repeated 4 times.
The first few nights, the draining process was quite painful. When the fluid gets nearly empty, the catheter, which is curled in a spiral in my lower abdomen and covered with little holes, tries to "suck up" every last drop of fluid. However, if there isn't much fluid left, the catheter sometimes rests against tissue (bladder, intestines, etc.) and tries to "suck" that up, so it's like an internal hickey or something. It can be quite painful. Sometimes shifting positions will help, but generally the only thing that works is for me to sit up cross-legged in the bed and lean forward. As you can imagine, that's not a comfortable position for sleeping. The first few nights, I would have to sit up every 2 hours or so and wait for the 10-15 minute draining to finish before going back to sleep. It didn't take long before I thought, "Yeah, I can't do this every night." So, I called the dialysis center, and they switched me to a "tidal" program, which only drains about 95% of the solution, leaving a little cushion for the catheter. That definitely seems to be helping. Now I sleep through the night and only wake up on the last drain cycle, usually around 5:15 or so in the morning, when the machine is trying to get the rest of the solution out. Because I'm "dry" during the day (meaning that I don't carry solution during the daytime), the last drain of the night tries to get even more out so I don't have a belly full of fluid. I'm learning to use my zen meditation breathing, though. Every morning, when that last drain cycle hits, I practice my deep breathing through the pain, and I actually do come away feeling pretty relaxed. Some of my best sleep comes from 5:30-6:30 in the morning, after the dialysis is finished and I snuggle back under the covers for a little more shut-eye.
After just a week on dialysis, I had to go back to the center this last Tuesday for a bunch of lab work and a visit with the doctor. One thing I've been struggling with is my phosphorus levels. Phosphorus can be nasty if it gets out of control. It causes things like enlarged hearts, brittle bones, itching (from calcium crystals in the skin), and calcifications of organs. When phosphorus levels are too high, the parathyroid gland tells the bones to release calcium to counterbalance it. As a result, the bones get weaker, and there is a ton of calicum and phosphorus floating around in the blood, which can lead to calcifications. My dietician was telling me that a recent study showed that patients with chronically high phosphorus levels had much higher rates of organ rejection after transplant. So, it's something that I needed to get under control. The ideal range is 3-5.5. In November, my level was at 8.2! Since then, I've been working on reigning in the phosphorus in my diet and taking phosphate binders with every meal. Phosphorus is in EVERYTHING, though. Some foods are higher in phosphorus, like biscuits, pancakes, and diet coke, but just about everything has some of it. Dialysis doesn't do a great job of getting out extra phosphorus, so it really does have to come down to diet and medications. On Tuesday, my level was at 4.7! :) Woohoo!!! It's back in the normal range! Everything else (my protein, calcium, potassium, etc.) is all in the normal range as well! My hemoglobin is also rising, which is great! Also, with the dialysis, my blood pressure is finally getting under control. While the dialysis certainly doesn't make up for everything that a kidney does (monitor blood pressure, tell the bone marrow to make red blood cells, regulate toxin and fluid levels, etc.), Thelma and Louise are getting a much needed break. My nurse explained it to me like this: My kidneys have been struggling to support my body on their measely little 5-10% function. Now, because the dialysis is doing the majority of the work for them, they can "rest" a bit. While they can't recover - the scarring and damage is permanent - they can start working a little more efficiently with what function they do still have.
One of the things that has been a big adjustment is all the STUFF that comes with being on dialysis. Mike and I work pretty hard at keeping our home clutter-free, but THIRTY BOXES of dialysis solution delivered each month can't help but make you feel like you're living in a warehouse.
Add in the gauze, tape, cycler tubing, drain bags, clamps, masks, sanitizer, wipes, etc., and the second part of the stash takes up an another industrial-sized shelving unit.
Needless to say, it's a bit overwhelming. I've spent some time organizing everything, though, and that helped. We keep everything in the guest room, so while I don't enjoy lugging the bags around the house, it's nice to have the storage out of the way.
I'm adapting to my "new realities", and I'm starting to feel a lot better already. My energy has started to return, my color is better, and I haven't had the problems with nausea that were plaguing me before I started dialysis. YAY! All in all, things are definitely looking up!
That evening I went home with my machine and was ready to get started. I got this nifty cart from Ikea for a great price, and it's PERFECT for holding all of my meds, gauze, tape, catheter caps, and extra materials. The cycler machine fits perfectly on it, and because it has wheels, I can wheel it into the living room or kitchen if I really want to, though I usually just hang out in the bedroom when I'm on the machine.
My treatment process is about 9 to 9 1/2 hours long, and I have to do it EVERY day. That's one of the components of PD. Your regular kidneys are working 24/7, so PD tends to be more natural since you do therapy every night. With hemodialysis, you do therapy 2 or 3 times a week for a few hours, so it can be much harder on your body and much less natural since the toxins have so much time to build up in your system. Of course, the downside of PD is that there is never a break. I'm learning to adjust to my new routines, though. Each evening, we get home around 5:30 or 6. At that time, I set up my machine.
Each night, I use 2 bags that are 6 liters. Over the 9 hours, I have four exchanges of 2.5 L. Basically, the pattern is as follows:
Step 1: Fill peritoneum with 2.5 L of dialysate solution.
Step 2: Fluid "dwells" in my abdomen for 1 hour and 40 minutes. During this time, the toxins in my blood are pulled through the peritoneum membrane (like coffee through a filter) and into the solution. Toxins and extra fluid are attracted to sugar, so the dialysate solution is dextrose-based. There are several concentrations, depending on how many toxins need to be removed. Currently, I use 1 2.5% bag and 1 1.5% bag. Because the dialysate has a higher concentration of sugar than my blood, the toxins are attracted to the solution, leaving my bloodstream.
Step 3: The used dialysate is drained from my belly. I have a long tube that runs directly into the bathtub drain, or I can use a big bag and drain it in the morning.
Steps 1-3 are then repeated 4 times.
The first few nights, the draining process was quite painful. When the fluid gets nearly empty, the catheter, which is curled in a spiral in my lower abdomen and covered with little holes, tries to "suck up" every last drop of fluid. However, if there isn't much fluid left, the catheter sometimes rests against tissue (bladder, intestines, etc.) and tries to "suck" that up, so it's like an internal hickey or something. It can be quite painful. Sometimes shifting positions will help, but generally the only thing that works is for me to sit up cross-legged in the bed and lean forward. As you can imagine, that's not a comfortable position for sleeping. The first few nights, I would have to sit up every 2 hours or so and wait for the 10-15 minute draining to finish before going back to sleep. It didn't take long before I thought, "Yeah, I can't do this every night." So, I called the dialysis center, and they switched me to a "tidal" program, which only drains about 95% of the solution, leaving a little cushion for the catheter. That definitely seems to be helping. Now I sleep through the night and only wake up on the last drain cycle, usually around 5:15 or so in the morning, when the machine is trying to get the rest of the solution out. Because I'm "dry" during the day (meaning that I don't carry solution during the daytime), the last drain of the night tries to get even more out so I don't have a belly full of fluid. I'm learning to use my zen meditation breathing, though. Every morning, when that last drain cycle hits, I practice my deep breathing through the pain, and I actually do come away feeling pretty relaxed. Some of my best sleep comes from 5:30-6:30 in the morning, after the dialysis is finished and I snuggle back under the covers for a little more shut-eye.
After just a week on dialysis, I had to go back to the center this last Tuesday for a bunch of lab work and a visit with the doctor. One thing I've been struggling with is my phosphorus levels. Phosphorus can be nasty if it gets out of control. It causes things like enlarged hearts, brittle bones, itching (from calcium crystals in the skin), and calcifications of organs. When phosphorus levels are too high, the parathyroid gland tells the bones to release calcium to counterbalance it. As a result, the bones get weaker, and there is a ton of calicum and phosphorus floating around in the blood, which can lead to calcifications. My dietician was telling me that a recent study showed that patients with chronically high phosphorus levels had much higher rates of organ rejection after transplant. So, it's something that I needed to get under control. The ideal range is 3-5.5. In November, my level was at 8.2! Since then, I've been working on reigning in the phosphorus in my diet and taking phosphate binders with every meal. Phosphorus is in EVERYTHING, though. Some foods are higher in phosphorus, like biscuits, pancakes, and diet coke, but just about everything has some of it. Dialysis doesn't do a great job of getting out extra phosphorus, so it really does have to come down to diet and medications. On Tuesday, my level was at 4.7! :) Woohoo!!! It's back in the normal range! Everything else (my protein, calcium, potassium, etc.) is all in the normal range as well! My hemoglobin is also rising, which is great! Also, with the dialysis, my blood pressure is finally getting under control. While the dialysis certainly doesn't make up for everything that a kidney does (monitor blood pressure, tell the bone marrow to make red blood cells, regulate toxin and fluid levels, etc.), Thelma and Louise are getting a much needed break. My nurse explained it to me like this: My kidneys have been struggling to support my body on their measely little 5-10% function. Now, because the dialysis is doing the majority of the work for them, they can "rest" a bit. While they can't recover - the scarring and damage is permanent - they can start working a little more efficiently with what function they do still have.
One of the things that has been a big adjustment is all the STUFF that comes with being on dialysis. Mike and I work pretty hard at keeping our home clutter-free, but THIRTY BOXES of dialysis solution delivered each month can't help but make you feel like you're living in a warehouse.
Add in the gauze, tape, cycler tubing, drain bags, clamps, masks, sanitizer, wipes, etc., and the second part of the stash takes up an another industrial-sized shelving unit.
Needless to say, it's a bit overwhelming. I've spent some time organizing everything, though, and that helped. We keep everything in the guest room, so while I don't enjoy lugging the bags around the house, it's nice to have the storage out of the way.
I'm adapting to my "new realities", and I'm starting to feel a lot better already. My energy has started to return, my color is better, and I haven't had the problems with nausea that were plaguing me before I started dialysis. YAY! All in all, things are definitely looking up!
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