When I explain PD to someone, I give them a lot of positive information. Things like:
No needles - no blood.
Privacy.
Fewer dietary/fluid intake restrictions.
No 3-4 hour appointments three times a week.
No spikes in blood pressure or stress on the body.
Using the cycler means your whole day is free.
And they usually respond, "Then, why are people still choosing to do hemodialysis?"
I can only answer with my own opinions, of course. When I was recovering from the PD catheter surgery and attending my final hemo appointments, I asked several patients at the clinic if they were considering PD. They all said no for various reasons. Things like:
It's too scary.
I don't want medical equipment in my home - my children would be scared.
I can relax here and let someone else do the work.
It's likely that I will get an infection.
I don't understand it.
Which is a shame, because there were plenty of folks at the hemo clinic who might benefit from doing PD. There were patients as young as 19 who could possibly have enjoyed full days of life without visits to the hemo clinic.
To tackle the main objections, I say this:
It's not scary. It's actually quite easy. I spend about 15 - 20 minutes setting up my cycler. Right before I go to bed, I connect and slip off to sleep. I wake up dialyzed. And go on about my day. There's nothing scary about that. Occasionally, I will kink the tubing or get into an awkward sleeping position and an alarm will sound. And I hit a button and move my body and all is well. Back to sleep. I don't feel the dialysis happening. Some people experience an end-of-drain pain. That is when you are emptying fluid and it's "pulling" on your abdomen. It's like a cramp and can be annoying, but goes away when you start to fill with fluid again. It all feels very gentle and natural. You fill with warmed fluid, you drain the fluid. And if you are doing manual exchanges, this process happens with the aid of an IV pole instead of a machine. When I did manual exchanges, I sat at my home office desk and surfed the Internet during the draining/filling process.
The medical equipment in your home is not scary. Manual PD-ers will have boxes of solution and supplies. An IV pole. And that's about it. If there are children in the house, I think they would be interested in the science of it all. And happy to have a parent who doesn't disappear for the hemo appointments and feel "wiped out" after hemodialysis. The equipment for the cycler is even less visible. The machine sits by the side of the bed and there isn't any use of it during the day. Being honest with your family about your dialysis needs isn't scary. It's part of the acceptance of kidney disease. My family feels happy for me that I have a way to take care of myself that fits in with my lifestyle.
Sure, you can let someone else do the work at the hemo clinic. Along with dozens of other patients. You are visible to everyone. No privacy. Sitting in a chair for a few hours and smelling all the not-so-lovely smells of a hemo unit. Hearing alarms going off constantly. Watching people have anxiety attacks. Having a mix of non-ambulatory and non-communicative patients from nursing homes. I have seen people have heart attacks and strokes while on hemo. And there is no way to escape what you see. With PD, the process is gentle on the body and doesn't cause the foot and leg cramps that hemo can. And PD is done in the comfort and privacy of your own home or office or wherever you choose. If you are new to kidney issues, and you have a dialysis decision to make soon, visit a hemo clinic first. Go and walk through and see if it feels right for you. It was not right for me. I was resentful of how much time I had to spend there. Sure, someone else did all the work for me but that was at the expense of much of daily life.
Infections are scary. PD patients are trained well on how to make clean connections and disconnections with our catheters. Easy steps are in place to keep you healthy. Wear a mask. Wash your hands. Move quickly and cleanly. Don't let your pets chew on the tubing. Don't assume your floor is somehow cleaner than everyone else's - if something falls on the floor, discard it and follow protocol for a clean connection to your catheter. It becomes habit over time. It gets easier to do PD wisely and carefully. It's second nature for me after all these years. If you get an infection, think about what you can do to better protect yourself. And if the infection is a fluke that can't be traced to your actions or an accidental incident, your PD nurse will talk you through the steps for treating it. In my opinion, PD patients are trained to have a healthy dose of fear of infections. Which isn't a bad thing. And you'll find a way to do your dialysis routine in a way that keeps you healthy and safe. Follow the steps that you have learned and don't obsess about infection. Just do your best to avoid them.
If you don't understand exactly what PD is and you are reading this blog, ask any questions you have. Send us an email. Look online for all available resources. Visit a PD clinic. Take some time to get that understanding. Doctors and nurses can give you the facts. Rachel and I can share our experiences. No question is "bad" or inappropriate. We want to help you figure it out and possibly enhance your dialysis experience. Not knowing how PD works might keep you from trying it, but if you develop an understanding of PD you might find that it is a better dialysis option for you.
Questions? We are always here to help.
- RM
No comments:
Post a Comment