Updated January 26, 2005
What everyone should know about Peritoneal Dialysis
Bryan J. Rollins
First, a little about me: I'm a 33 year old renal patient with MPGN-1, who received a living related transplant from my cousin Diane on December 21, 2004. Dr. LaFuente of Methodist Hospital inserted my PD catheter during April of 2004, and started peritoneal dialysis the first week of May 2004. I had the catheter removed a week after the transplant on December 28, 2004.
While I highly, highly recommend peritoneal dialysis compared with hemo dialysis (which I will admit I have not experienced). However, there are several things that I wish I had known about peritoneal dialysis that would have made the transition much easier. This is an attempt to share those things with people who are considering or about to start peritoneal dialysis.
Disclaimer: I am not a doctor or a nurse. Before you take any of my advice, please consult your PD nurse or your nephrologist. The following is only my experience and may not match what you require for proper treatment.
This is written assuming some basic knowledge of PD: You have a catheter implanted surgically, fluid exchange in the peritoneal cavity is what provides the dialysis, etc.
1. Facts I didn't know before
The "exchange" process is the focus of the peritoneal dialysis process - i.e. swapping out the toxic fluid that has been sitting inside your peritoneal cavity. The exchange is what you will learn and practice in manual peritoneal dialysis, or CAPD (Continous Ambilatory Peritoneal Dialysis).
The exchange is basically four steps:
The process needs to be a sterile process: you will use a mask, washed hands, lots of care not to contaminate the sterile inside of the peritoneal cavity. Otherwise you get peritonitis, a nasty infection that I haven't had (yet). Eventually everyone gets it if you stay on PD long enough. But the simple "exchange" is a little scary because in training you're trying hard not to screw up and contaminate yourself, and it feels like a lot of pressure. After a while, it's routine and not stressful. At first it's very stressful.
The process of a single exchange takes more than 30 minutes for me because apparently I am a "slow drainer". This means doing it four times a day is close to four hours of time. This is why CCPD (using a cyler at night) is the only option that I think makes sense for anyone who is active.
You will most likely wear a "PD belt" - the catheter is longer (see 'Self Image' below) than you think. So you wear a special belt that holds the catheter inside it so it doesn't flop around while you walk or dangle out the bottom of your shorts... It's basically a thick waistband. The one they gave me at the clinic was gigantic and white. The store mentioned in the 'Misc' section has much better belts in better colors.
The daily process of caring for your "exit site" (where the catheter goes into your skin) is more cumbersome than I had expected:
- Connect your catheter to the manual exchange bags.
- Drain the fluid inside you
- Refill with new fluid
- Disconnect the catheter
You will start in training doing manual peritoneal dialysis (CAPD), but your goal is to get off manual PD as soon as possible and start using the cycler. The cycler is great, and once you get used to it, life can be pretty good. But the manual process four times a day takes up about as much time as being in a dialysis clinic hooked up to a machine for four fours.
2. Self Image
- Remove gause and tape from the exit site
- Shower, wash the exit site
- Dry the exit site
- Use anti-bacterial solution to clean and soak the exit site
- Re-tape your "anchor" where the catheter is taped to your skin
- Apply new gause pads around the exit site
- Apply tape over the gause
This was probably the hardest part for me personally. Maybe I'm vain with my highlighted hair and fake glasses, but I think everyone cares about how they look and mostly how they feel when they look in the mirror. Being a single male who dates a frequent amount, this was troublesome.
The tube is much longer than I had thought - about 12 inches with the "exchange set" added on to it. During surgery they will put in the tube, then after they will connect the exchange set sometime before you start dialysis. Looking in the mirror the first time I saw the tube, I started crying. I couldn't believe I had a piece of plastic tube coming out of me. It was both nauseating and shocking.
I also didn't understand that you carry solution during the day. Seems obvious, but having 1.5 to 2.5 Liters of fluid inside you is no picnic. And during my training, a mistake was made and I had 6 Liters (15 pounds) of fluid inside me. I went to an Astros baseball game and felt worse than I had felt before being on dialsysis. But carrying 1.5 liters isn't that bad, and I'm used to it now. (Most people will carry more than 1.5 liters, I was lucky because I still had residual kidney function.)
Physically, having a swollen abdomen isn't too sexy, and I've never had a gut in my life and wasn't about to start. You never realize how important how you look naked is until you add a tube and a belly. They told me that everyone gets a stomach and it's just something you have to deal with. I've actually avoided it somehow but I think I have a strange abdomen so I guess I'm lucky. But the first week with 2.5 liters I could definitely see my first "beer gut". The first week or so you will feel a lot more pressure with all this fluid inside you - that feeling will go away, especially if you get off the high manual fluid amounts and start carrying less during the day (but not everyone will be able to do this).
Given the fact that I had been retaining water, dialyis dropped a lot of weight off me in the first week. I went from 169 pounds to 153 in 5 days. I looked very different after the initial week of dialysis.
Because your weight is fluxuating and you may be full of fluid, your clothes may not fit anymore - they may be too tight or too loose, or both. It's a royal pain. My first week I was so bloated nothing fit. The week after my pants were huge on me. And I'm not wearing sans-a-belt anytime soon, so this is a problem. Now my weight has stabilized and I've gained a little of the muscle weight I lost before dialysis back.
I'm not going to go into detail here, other than to say that "travel is possible" but travel
is exceptional cumbersome, especialy if you are a business traveller accustomed to never
checking bags and spending as little time dealing with logistics as possible. I could write a book
about just this subject alone. Of course, only about two people would read it, and one of them
would be my Mom.
I was told that PD was not painful, though some men experience "some discomfort" when they first start PD because of certain male nerves in the area of the catheter.
The first time they did an exchange, it felt like someone quite large was standing on my testicles.
The nurse thought I was having a seisure - I couldn't talk, I couldn't see straight, and I was foaming at the mouth.
I've been told this is VERY VERY VERY rare. So, I guess, lucky me.
The process is still a little painful for me but nothing like it was the first time.
5. Bed time
When you're attached to the cycler at night, you're tethered via a 10 foot tube to a machine. You can't get up and go to the bathroom (I have a urinal nearby for nights where I can't wait until morning). You can't turn off the TV. You can't answer the phone if it's out of arm's reach. And you can't get the door. Of course if you have someone who you live with, it's easier because you can make them your gopher. But they still can't pee for you.
Get used to being in bed for seven and a half hours. I typically read for an hour before sleeping, because I just can't sleep for 7.5 hours (my prescription, varies according to what program they put you on). Though I have been very tired at times and have slept well beyond the basic program. Now, the average dwell time is 9 hours, so again, I was lucky. For people with more severe renal failure, you'll spend more time hooked up to the cycler.
Get to know your cycler, how to program it, how to change the program, how to shorten in, how to skip a stage, etc. The cycler will complain and beep if it doesn't get what it wants (the tube is kinked, you didn't drain as much as you should because the six Coors Lites that you drank have dehydrated you, etc.). You want to follow your prescription as close as humanly possible, and when things malfunction, call the support phone number for the cycler, or consult your PD nurse. But being on a first name basis with your cycler is very important. I call mine "The Beast."
6. Managing shipments
A month supply of the dialysis fluid (for CCPD, the nighttime cyler) is 30 boxes that are 18" by 10" x 12". Add on tubing, cassettes, drain bags, etc. It's a lot of stuff if you live in an apartment. You'll need some space.
Baxter (or whomever your supplier is) is in the game to make money. They won't say no if you order way too much stuff. They will just send it and bill your dialysis clinic.
Running. Running is not great - I'm still not sure if it's because I was sick and out of shape - but regardless, DON'T RUN WITH FLUID IN YOU. Drain first, then run, then fill back up. They have bags that are just manual drain bags. Use those, then fill back up with a manual bag.
Swimming. Not allowed. At least until the exit site heals, which can be six months. This means no immersion of yourself into water. Showers are cool, but baths are not.
Biking. Cycling seems okay, though I still prefer to be empty when I cycle.
Bleeding. For some reason my exit site still bleeds every time I exercise. No one seems to know why or have a good explanation but they also don't seem too worried. That's why they call it practicing medicine. No one has it right yet.
Can I still have sex? Believe it or not this was one of my biggest fears.
With all the changes in blood pressure, with abdominal surgery, with massive amounts of pain (at first) during cycling, I was worried I would have to be celibate.
Or that the catheter / belt combo would send people running. Not the case.
There's no reason you can't have a healthy (or unhealthy depending on your tastes) sex life.
However, if your partner gets wild and starts pulling on your catheter you may have some issues.
Kidney stuff is a super cool company. They may gear for people who are on peritoneal dialysis. I have bought about seven of their PD belts, which are much better than the crap they give you at the clinic.
Why It's Great
So despite all the above, I am happy with my choice. It's keeping me alive and healthy.
Questions? Feel free to contact me.
You feel good almost every day.
I still have bad days, but mostly my life is pretty good, especially in comparison with people on hemo dialysis.
I hear horror stories of the 48 hour cycle, where after hemo dialysis you feel good again and by the next time you feel like you're going to die.
On PD, it's a nightly process so your levels stay pretty consistent and you don't get anywhere near being toxic.
In most cases PD is only at night, meaning it doesn't impact your day other than 5-10 minutes of set up each night.
Diet.Before PD I couldn't eat any of the foods I loved: bananas, orange juice, etc.
I can now have about as much potassium as I normally had before.
In fact PD will drop your potassium levels low if you have a low potassium diet, so I had to add back OJ (yes!) and all my favorites.
Maybe this is crazy, but I'd swear PD removes whatever toxins cause hangovers. I am not advising drinking here - alcohol and kidney disease aren't a great combination. But this is more to show that you may find affects (both good and bad) that you didn't expect from dialysis. If you decide to drink, make sure to take your phoslo because all the phosphorus in most alcholic drinks can cause massive cramps at night, along with other negative side effects.
The PD Nurse
Most of us are used to very casual relationships with medical personnel - we see them once a year, and we're happy to not have to talk to them. Your PD Nurse is different. You need to trust your nurse and be honest with her. If you are in pain, they need to know. If the cycler is misbehaving, they need to know. If your PD supplier (i.e. Baxter) is not getting you what you need, tell them. Having a good relationship with your nurse is key. If you don't trust your nurse or can't work with them, get a new one. I was incredibly lucky to be trained by Easter Brawley in Houston, Texas. I owe all my confidence in PD and my success with it to Easter.
PD keeps your fluid level down, gets you into a routine, and you can control it.
It's not easy at first, and my first week (training) was the worst week of my life, I kid you not.
Yet at the end of this week of hell, I accidentally took a right turn into the dialysis clinic where hemo patients were sitting in rows attached to machines, their blood cycling out and back into them.
No thanks. Despite the difficulty, I'm really happy I choose PD.