How it began…
Being a nurse; being in the hospital and hearing the words “kidney failure”, my first thought went to dialysis. And my next thought was “absolutely not”.
I’ve mentioned in a prior post how resistant I was to accept my diagnosis in the beginning, and even though I wasn’t yet in a position to need dialysis, I just KNEW I was not going to do it. Working as an ICU nurse, we see the worst of the worst and there was absolutely no way I was going to put myself through that. Spoiler alert: I was wrong.
Upon meeting my nephrologist out patient, we developed a plan. I discussed with him how I was adamant about not becoming a dialysis patient; we both agreed that I would start high dose steroids in an attempt to recover some kidney function and have weekly lab draws to monitor how I was responding. We both hoped this would be enough to help me make it directly to transplant without needing dialysis. Unfortunately, this wasn’t the case.
Leading up to dialysis…
It had been about two months since my diagnosis of stage 5 kidney failure; I was on very high dose steroids and still getting weekly lab draws but my kidney function numbers were staying about the same, and my symptoms felt like they were getting worse. At the end of the day, my legs would be so swollen that I could hardly stand. I could push a finger onto my shin and the indention would stay for minutes; I’m not exaggerating. The slightest touch to my skin felt like fire. I couldn’t wear shorts because the texture of the couch irritated my legs. Showering was awful. Because my skin was so fragile, I developed little micro cuts all over my hands which made hot water feel like bee stings, yet I was freezing cold at baseline, so cold showers were also out of the question. I felt like I had a 24/7 sunburn that would not go away. And then there was the fatigue; which I know I’ve mentioned before but simple everyday tasks were exhausting and quite frankly becoming impossible.
I was sitting at home one day when I received a message from a nurse at the renal clinic stating that my nephrologist wanted to see me the next day. She wouldn’t give me much more information regarding the visit just reiterated that he wanted to see me. That’s when I knew that a dialysis discussion was in my future.
The conversation pretty much went as expected. The steroids weren’t improving my kidney function; I was just suffering from their side effects and my symptoms related to my kidney failure were worsening.
Choosing peritoneal dialysis over hemodialysis…
I felt miserable, so I was a lot more open to the idea of dialysis now compared to when I felt fine at the time of my original diagnosis. I knew peritoneal dialysis (PD) was the route I wanted to take. Because it’s done at night, the patient typically has more freedom to do things during the day. Also, if I chose hemodialysis (HD), I would work every other day and then would go to the dialysis clinic every other day. No way could I handle that. HD and PD both have their pros and cons; for me PD was kind of a no brainer. I didn’t have to spend my off days going to a clinic, my access point could be hidden under my shirt, and I could manage a lot of my care independently. I would; however, need to have an outpatient surgical procedure to have the PD catheter placed.
Having the peritoneal dialysis catheter placed…
Upon leaving my appointment with my nephrologist, I was scheduled to have my peritoneal dialysis catheter placed in two weeks and would start PD in the clinic two weeks after that. Unfortunately, there were some complications during the procedure and I woke up without a PD catheter and spent two days in the hospital under observation. I was told I had to wait a minimum of two weeks for my abdomen to heal before I could be scheduled for another catheter placement. This was devastating news. I had spent so much time telling myself that I wouldn’t do dialysis and then I finally came around to the idea and the procedure wasn’t successful. I was so physically and emotionally exhausted. My outlook had done a complete 180. I was actually ready to start dialysis so I could start to feel somewhat better and now this was delayed for at least another two weeks.
My procedure was scheduled for two weeks later. This time there would be no complications, and I woke up with a successfully placed peritoneal dialysis catheter. Typically, these catheters need two weeks to heal before use, but my nephrologist didn’t want me to wait. So, I was given what is known as an urgent start. My catheter was placed on a Thursday afternoon and then Friday morning I was in the dialysis clinic receiving my first dialysis session.
Receiving peritoneal dialysis in the clinic…
As I’ve mentioned before PD is done at home, typically while you sleep, and is managed independently with the use of a cycler. But before this can be done, there’s a series of training sessions that have to take place in the clinic with an assigned nurse. I was given five dialysis sessions in clinic, where I was trained on the at home process and then demonstrated that I could safely and effectively self-administer peritoneal dialysis.
It started out gentle, three cycles with a 500cc fill and a two-hour dwell. This was tolerable. Each day I went up by 500cc. The days were long but not so bad. My best friend, Bethany, and I would go to the clinic in the morning and just hang out in a little room while I completed my session. We’d stream something on a laptop or take a nap to kill the time.
In the beginning, I was so tired after dialysis. After we left the clinic, all I could do was go home and nap. I thought this was going to make me feel better, but arguably, I felt worse. It took a couple weeks of consistency but then I started to notice that I could sit on the couch again, warm water stopped stinging my skin, the edema in my legs slowly dissipated and my energy level started to rise. I started to feel like myself again, for the first time in a long time.
Dialysis at home…
I’d be lying if I said it was a walk in the park. My final prescription is 6 hours long, made up of three cycles, with 2000ml dwells. If you remember from the education post about PD, one cycle consists of a fill, a dwell and drain. I do three of these in one night.
I’ve certainly had to make some adjustments to incorporate this into my routine. I’m still working full time, which means I get home from work around 8pm and have to leave for work around 6am. So if I’m working back to back days, this gives me 10 hours to get home, shower, eat dinner, get ready for bed, connect, complete my dialysis session, disconnect and leave for work. Sometimes it just feels like there’s not enough hours in the day.
It’s been a lot of trial and error. I’ve learned a lot of things the hard way. For instance, I can’t eat or drink too close to the time I hook up. The more time in between dinner and dialysis the better. Think about it, you eat a full meal, then you put two liters of fluid on top of your nice full stomach. Makes you want to vomit doesn’t it? Yeah, me too. I’ve had to become a back sleeper but more like a propped up back sleeper. If I try to lay on my side, I feel the fluid shift and feel like my ribs are being stretched. If I try to lay flat on my back, I feel the fluid rise and it feels like its sitting on my chest, making it difficult to breathe.
Then there’s what they call drain pain. I like to think I have a decently high pain tolerance, but sometimes the drain pain makes me feel otherwise. The cycler uses a sort of suction to drain the fluid out my abdomen at the end of each dwell. If I become too dry, it creates almost a vacuum and the tip of the catheter gets pulled up against the lining of my abdomen. This touches nerves that have yet to be desensitized resulting in a miserable nerve pain.
I still can’t quite sleep through the night, but I am certainly becoming more desensitized to this drain pain feeling.
The last thing I want is for these posts to come across as negative or like I am seeking sympathy. I really just want to be as transparent as possible about the entire situation.
So let me list off some positives. I feel so much better. I actually feel like myself. I’m still tired but I’m at a point where I can do things, like go to concerts and hang out with friends. Of course, this makes me feel like I have some autonomy back which has done wonders for my mental health. My relationships with my family, friends and partner have become significantly stronger.
Obviously, dialysis is not ideal. I have to plan my life around it, but it’s at least giving me an opportunity to have a life again. So what’s a little drain pain in exchange for feeling like myself?
Stay tuned for a video of a day in the life of a PD patient.
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