Hey, I'm Jason. I'm a chronically-ill-super-freedom-loving-medical-self-journalist.
I got this comment from Jen:
I’ve tried to sort out your blog, jumping from 2009, to 2010, to present day. You’re on peritoneal dialysis now, after having been on hemo? Am I understanding that correctly? I’ve just visited the hospital today, to set up an appointment for a peritoneal catheter surgery. Will peri dialysis steal the good days and the normalcy and urine production I still have? I’m overwhelmed and thinking that if I feel “ok” now, why would I ruin that by putting the catheter in now? I’m at about 13%. I’m tired.. years and years of being tired.. but tired and normal feel pretty good considering what might be in store for me. I’m scared. Any advice would be helpful.
Thanks a lot,
And this one, later, because I lazily write a blog post each decade and I’ve kept her waiting unneccessarily:
I’ve been hoping you’d post again. I’m just starting on PD and I’ve heard so many horror stories that even though I have my catheter in place, I’m putting it off. Could you talk on the subject of whether or not you’ve had pain with your exchanges, if you do manual vs. machine, etc.. I’d like another perspective. Thanks so much, your blog is important.
Yes, Jen, you have sorted out my travels in Dialysisland correctly. Thank you for commenting and complimenting, I’m humbled.
I’m sorry you’re going through all of this, I understand most of what you are feeling. We’ve all been through this stage, us kidney disease folk. That “okay” feeling you have, it’s not real. I direct you to, almost 25 years ago, the first time I dialyzed. Back then, they put in my temporary access (j-cath) and monitored progress by having me lie in a hospital bed for each treatment until my fistula healed! Can you imagine? It all seems primitive now, since the current m.o. is “kick ’em out quick!” Anyway, I digress.
My memory is I was very into crossword puzzles back then. I was also into the final year of college, in a program that required a thesis not unlike a Masters program. And I was failing. At both. I needed dialysis, but didn’t know it. I could ride my bike to school, I could go to class, I could even go to parties and still make it to school the next morning. So I thought I was fine. When I finally got onto dialysis I remember sitting in this hospital bed doing crossword puzzles. My brain had lost its power … until I dialyzed. After dialysis began, I was way more “okay” than I had previously been. There was an improvement. I graduated with straight A’s that year. My crossword skills, well, they still need work.
As for urine production. I don’t believe that having an access placed will affect your output (which I guess by now you’ve probably figured out for yourself, Jen). If I understand correctly, it’s the dialysis that ruins your pee-ability. The kidneys shut down because hormones present pre-dialysis cease to operate post-dialysis – the brain doesn’t think it needs kidneys, so it takes a break. But that’s not true for everyone. There are plenty of people who make urine while on dialysis, lucky bastards. I do not know the official chemistry/biology of this process, so you should ask your doctor. Frankly, you’ll probably lose some output eventually and you’ll have to watch how much fluid you take in. This process is much less arduous on PD, so you’re headed in the right direction. I drink basically what I crave in any given day, remove that small amount each night and move on. As with most things in life, gradual gains are gentler than forced progress. Which is true for your kidney failure: if you had lost all your kidney function in one day, you would have noticed, but you’re losing it slowly. I point to aging as another example. I look just as good in the mirror as I did at 17.
Then there’s the PD itself. I doesn’t hurt me. It never did, even in the beginning, when they told me: it’s going to hurt. I do my PD on the machine and I do manual exchanges; I feel nothing. At the very end of a drain, the catheter inside the belly can often come to rest on tissue, instead of floating in solution. For some folks, this hurts. For me, it’s the built-in signal that my drain is complete – a mild pinch. The only place I have regular pain is at the exit site for the catheter. For some reason, I cannot get the irritation under control. Some days this is very, very annoying. (Also note that I have either always had, or have built up some kind of hyper-human pain resistance. What hurts most people, vaguely bothers me. It’s a gift. Not enough of a gift to make any money from, naturally, but for a dialysis patient, a gift. I’ll take what I can get.)
Now. About these horror stories. I’m pausing here, in my mind, thinking of why anyone in their right mind would tell someone something scary about a procedure or treatment. What’s that all about?
I think I know. I go on Yelp and review businesses fairly often. When a place is truly, truly exceptional I might write them up. But if a place is remotely bad, I’m all over it. We complain as humans. We like it. It’s my opinion we ought not to live this way, instead finding the good in everything. (Yes, I have some work to do in that department. Back off, my loyal readers. These things take time.) Look, Jen, you’ll not find any shortage of people who have heard about some sister’s dad’s aunt who got wrapped up in a PD tube during an ill-concocted bunjee jumping attempt, and died. There are also stories about Brad Pitt’s true identity as an alien life form. There’s no evidence of a PD strangling. I’m not going to get into the Brad Pitt thing. But someone told me …
Here’s a success story for you, Jen, may it help balance your perspective about PD. It’s mine. You know, my family very much wanted me to start PD. So much so, they felt an intervention was necessary. I didn’t want to go to PD–everything I’d heard (yep, same deal) was negative. Patients get peritonitis; a “clean room” is required for any feeling of safety. If the patient isn’t at a 34.5 degree angle while exchanging, the left ear will turn blue. Blah blah blah. Eventually, I agreed to “try” PD, totally committed to not succeeding. It snuck up on me, but before I knew it I was preaching PD to everyone I knew. May this be your experience, Jen. And yours, fearless reader.
Jen is suffering from kidney failure. Kidney failure sucks. So there’s no rosy picture I can paint for her, or for you. My best advice is to seek the help of a professional therapist. Because they’re professionals. A dialysis patient probably has a primary care physician, a dietician, a nephrologist, a surgeon, a social worker, a vascular surgeon, a transplant coordinator and a dialysis nurse. Why on earth people shun the help of a psychologist or psychiatrist is well beyond me. So don’t shun it. Fears about the unknown future (is there another kind?) are totally normal, unraveling them is difficult – get some help. Most places have therapy available for little-to-no cost. Best value, by the hour, you’ll find in healthcare today. In my humble opinion.
I’m new to this. Answering questions from other patients is never how I envisioned this blog. Luckily, life has its own path – following the path has rewards. Keep following.