Hello! My name is Dave White, and I’ve been a dialysis warrior since late 2009. I live in Prince George’s County, MD with H____, my wife of 13 years. I currently do in-center hemodialysis on a Tue Thu Sat schedule (1st shift), and I also did in-center nocturnal dialysis for two years, as well as one year of peritoneal dialysis (sometimes called PD). This essay covers the good things, bad things, and surprises I experienced during my year as a PD patient.
Here's some background: In Spring 2013, I had grown weary of the extra time in the dialysis chair that nocturnal dialysis required (six hours in my case, as opposed to 4.25). I also longed to return to a “normal” wake/sleep schedule. I had only been listed for a kidney transplant for about a year at the time so, since the chances of receiving a kidney in the near future seemed slim, I started looking at peritoneal dialysis (PD) as an option.
Right around that time, my dialysis facility had a Baxter representative visit to talk about home PD with any interested patients. During the presentation, I asked the rep and two current PD patients all the questions I had, and by the end of the presentation I was 95 percent convinced that I would try it. The facility social worker provided me with the remaining 5 percent by reminding me that if I didn’t like PD, I could always switch back to hemo. With that in mind, I made the necessary arrangements for surgery and training. I had my PD catheter surgically implanted in early July of 2013, and started my training about two weeks later. I had my last hemodialysis session on July 31, and started doing PD at home the very next day.
In early April of 2014, an abscess developed near my catheter tunnel (the area between where the catheter attaches to the peritoneum and the catheter exit site), and the abscess was surgically removed a couple of weeks later. The abscessed area was not treated with antibiotics post-surgery, and unfortunately I developed peritonitis three months later. When I was advised that my catheter would had to be removed to completely clear the infection, I decided to remove the catheter permanently and return to hemodialysis. The catheter was removed on July 31, and I restarted hemodialysis the very next day, having spent exactly one year on PD.
Here's what I discovered during my year on PD:
No more long needles!
Dialysis center visits dropped from about a dozen per month to twice monthly (once for bloodwork and other tests if needed, and once to review the results and meet with the care team).
I had a steadier energy level, and no longer had that washed-out “dialysis hangover” feeling three times a week.
Travelling out of town was much easier, because there was no need to coordinate dialysis times with another clinic (although a nearby center was notified in case of emergency).
There were fewer restrictions on my diet. I could drink orange juice, eat bananas, and eat tomato or tomato products much more often, and also could drink more fluids because, since I was dialyzing more often, I didn’t have to pull off as much fluid during each session. I freely admit that I made the most of this opportunity!
Lastly, the home environment was preferable for a bunch of reasons: it was more comfortable, I didn’t have to sit near other patients whom I might find objectionable for any one of a variety of reasons, and I had all the creature comforts of home within reach.
I am alive and productive thanks to dialysis, so I don’t want the following to read as being ungrateful. This is meant to be a summary of my year on PD, so I listed everything that I could think of.
Three outpatient surgeries, each of which left me in considerable pain for about a week.
Every three months, when I visited the facility for bloodwork, I was required to bring the previous day’s used PD solution and filtrated liquid so my dialysis adequacy could be measured. The liquid weighed about 40 pounds and, since I had to use mass transportation to get it to the center, I dreaded this day!
Being connected to the cycler overnight was inconvenient, as I couldn’t roll and thrash around in bed as I normally would, and I couldn’t lay on the side where the catheter exit site was. The alarms that the cycler would sound every night were annoying and a little frightening as well.
The time commitment was burdensome: nine hours overnight, one hour during the day, and an hour of daily setup and teardown meant that I spent eleven hours a day doing dialysis-related stuff.
In addition to the time commitment mentioned above, I spent a significant amount of time every day scheduling activities so they would not conflict with my dialysis schedule. At times, it felt as if I was spending the whole day either dialyzing or thinking about dialyzing. The delivery of PD supplies had to be coordinated every month as well.
I’m 6 feet 3 inches tall, and weighed 97 kilograms (about 214 pounds) when I was on PD. Generally speaking, larger people need more time dialyzing on PD to clean the bloodstream of toxins, and may also have to carry more fluid in their peritoneum during dwell periods. I had to carry around up to 3 liters of PD solution, and even more towards the end of each dwell. Carrying that amount of fluid would sometimes be extremely uncomfortable.
Sometimes, “drain pain” (it usually felt like a cramp on one side) occurred when draining. The only solution that worked for me would be to stop draining and resume when the pain subsided, and that would take anywhere from five to 15 minutes. This would add time to each exchange of fluids.
Supplies took up a lot of space. We live in a modest two-bedroom apartment, and I had to get really creative to make all the equipment fit in my bedroom. I had to make room for about 50 boxes of PD solution, a cycler, an IV pole, and various other PD necessities. The PD solution boxes were each about the size of a toaster oven, and weighed 25-30 pounds.
Speaking of supplies, used supplies had to be disposed of properly. There are two aspects to consider. First, the packaging materials have to be discarded regularly because they take up space; this wasn’t too much of a problem for me, but it might be a huge issue for others depending on local governmental regulations. Secondly, the PD solution contains dextrose, so if you just dump it down the sink, a nasty clog situation will eventually develop. I found it necessary to pour boiling water down the sink after dumping used solution.
The PD catheter creates a new orifice in the human body that has no natural defenses to protect against infectious agents and organisms. As a result, exceptional care must be taken when performing exchanges. A protocol called the “aseptic technique” must be followed; it isn’t very time-consuming, but it is very exacting. If at any point the protocol is violated, the patient may have to start the procedure all over again, and is expected to self-report any contamination of the catheter and take immediate action to prevent infection. This can involve antibiotics, a trip to the dialysis facility to get examined, a trip to the hospital emergency room, or any combination of the above.
Sometimes infections occur even when all precautions have been properly taken, and when this happens, peritonitis - inflammation of the peritoneal cavity - can occur. As I mentioned earlier, this is what turned me off to PD permanently. I had to take antibiotics, had a stomach ache that wouldn’t go away, and was generally miserable for over a week.
Last but not least, the relentless routine was disheartening. Hemodialysis patients get four days off a week. Many PD patients get no break at all -- it’s either do an exchange, or do an exchange, day in, day out, 24/7/365. This, along with the constant planning and scheduling, got to me every so often.
After a few months, I found that I was drinking a lot more fluid than recommended. I was able to do this because I could choose how much fluid to remove on a given day. My nephrologist could tell how much fluid I was removing by looking at the reports generated by my overnight cycler; she didn’t reprimand me, but she let me know that she knew. Over the long term, I could have damaged my peritoneum by using higher concentrations of PD solution in order to remove more fluid during each exchange. I knew this, and could have done a much better job of managing my fluid intake while on PD.
This is why I was shocked when my “drink more, pull off more” mentality stopped dead in its tracks when I returned to hemodialysis three times a week. I really can’t explain it other than by saying that the control that I had over my therapy while on PD transferred over when I returned to hemodialysis. (Then again, it could be fear of cramping.) I’ve picked up a few tricks to limit my fluid intake since returning to hemo (like substituting fruit for liquid at meals or not refilling my glass), and those tricks help, but I think that a change in mindset has been the main reason.
Another big surprise is that I don’t miss PD at all. I think the biggest reasons are 1) the changes at home that were necessary to support the PD lifestyle, 2) the constant scheduling, rescheduling and thinking about scheduling exchanges, and 3) fewer opportunities to exercise during a typical day. I re-check the feeling of not missing PD regularly by asking myself whether I miss it at odd moments, like when waiting for the city bus that takes me to dialysis at 5:15am in inclement weather, or when patients near me on the center floor cough and sneeze without covering up or wearing a surgical mask, and even when my fistula arm is sore; the answer is always a resounding no. The bottom line is that when I was on PD, I didn’t miss hemo one bit, and now that I’m doing hemo again, I don’t miss PD at all.
My diet has improved thanks to PD. One disadvantage of hemodialysis is that I usually don’t feel like cooking dinner the evening after a session; this was definitely the case that first year of hemo. Back then, I would eat more fast food and take-out or delivery food as a result. The steadier energy levels that PD gave me meant that I could cook more of my own meals, and that’s what I did.
Two changes in my habits resulted. The first was that I mastered the art of cooking for one. I did this by cooking for two and eating the leftovers a day or two later. (My better half loves my burgers and shrimp, but that’s pretty much it.) The second change resulted from developing the habit of eating supper while on the cycler; I had to wash the pots and pans before eating, because doing it afterward was not an option. Both of these habits continue to this day.
The “aseptic technique” of sterilizing and sanitizing PD equipment before and during each exchange required the use of liquid antibacterial soap. Not only do I still use it to wash my hands, but I use something similar in the shower as well, and I no longer use bar soap at all.
The folks at Baxter wanted the cycler back when I stopped doing PD, but I was allowed to keep everything else. This was great until I learned that no one wanted the month’s supply of PD solution (almost half a ton’s worth) that was just delivered. I forget why Baxter didn’t want it, but I remember clearly that my dialysis center didn’t want it because they would have had to pay $100 to return it to Baxter or something like that. I couldn’t understand why all that unused solution should go to waste, but the upshot was that I had to dispose of it myself. I spread the task over four or five weeks and, when done, was delighted to discover that my bedroom space now looked like a normal living space, thanks to 1) the PD supplies no longer being in the room, and 2) all the things I had to move or dispose of to make room for the PD supplies that were no longer there. My clothes had room to breathe in the closet again!
Finally, thanks to PD, I discovered two great dialysis-related Facebook groups: Dialysis Discussion Uncensored, and Home Dialysis Central. I still find them to be tremendous resources, and review them and a few other dialysis discussion groups constantly.
That sums up the highlights, lowlights, and surprises of my year on PD. Would I make the same decision to switch if I knew what I know now back then? You would think that I would run away screaming - but it's not so simple! I really like my life right now, and my year of PD is a big reason for that, so I think that I'd make the same decision!