Restrictions

Hi all,

This is my first post here, so excuse me please if I don’t follow protocol.

My function is about 20% so I’m pre-dialysis, but I’ve started looking into the options and am leaning towards PD. My neph says there’s a waiting list at the University hopsital to do home hemo, and that I’d have to start out in-center first, which isn’t an option because I need to keep my job. Also that to do home hemo I’d need to have an ultra, super duper water filtration unit installed at a cost of $10,000-$20,000. So much for that! Anyway…

An old post elsewhere on this site mentioned that baths are discouraged for PD patients as a source of infection. My neph had said after I started PD I’d still be able to go kayaking (I do open water, not white water). Is he overly optimistic, or sugar coating reality, or does he not realize the risk? I’m a decent paddler but can’t rule out the possibility of getting dunked in Lake Michigan. A dry suit (not a wet suit) is a possibility, but they’re expensive and uncomfortable, particularly in the summer months. So what’s the reality here?

That got me to wondering what other restrictions there might be. I have a horse and two dogs, and animals make for a messier/dirty lifestyle. I like to bike ride and run, but I’ve read that I should exercise when the temp’s over 80. And how do you exercise and not drink more water?

With any luck I’m premature with these questions and won’t start dialysis for a while yet. Still, I like to face things head on.

Thanks in advance,

Karen

Hi Karen,

Welcome to Home Dialysis Central! We’re very glad to have you. I’m NOT a patient (I’m a developer of this site), but do have some thoughts for you based on what I’ve learned from other folks with PD–and we’ll see what we can do to get more of them to answer you, too.

OK, restrictions. PD programs vary as to how strictly they follow the “never get a PD catheter wet except for a brief shower” philosophy. Some clinics will let patients swim in pools–typically they’re not giant fans of lakes, because of the increased potential for infection. BUT…there are tricks that you can do to keep your PD catheter dry even if you do water-based activities. For example, I’ve heard of folks using “ostomy” bags, which seal very water-tightly to the skin, and popping the catheter inside. These bags cost a few dollars each, but since you wouldn’t go kayaking 12 times a day, the cost is probably not prohibitive. Others have rigged up various solutions that involve tape and occlusive dressings, but these seem a little more iffy to me.

Another possibility you MAY want to think about for PD–there is something called an intrasternal catheter (more used in the midwest than other parts of the country). Instead of having an exit site in the belly, it exits in the chest. Draining and filling are done in the usual fashion (never having seen this, I have to picture something like a car syphon, but supposedly it works great), and the chest site is much, much less prone to infection. People with intrasternal catheters CAN take baths, as long as they keep the water level below the catheter.

I’m not going to address the weight gain issue, but my sense is that it varies from person to person, and the initial water gain that might have tends to “settle down” over time, so you don’t always look a little bit pregnant.

Good for you for looking for answers ahead of time–it’s your best chance of keeping your lifestyle as similar as possible to how it is now.

Dori Schatell

Hi Dori!

Thanks for the welcome and the reply. The ostomy bag sounds like a clever, workable solution.

Re-reading my post, it seems a bit short-sighted or something. It’s not like kayaking is my reason for living. Maintaining as normal a life as possible in the face of a chronic disease simply seems like the emotionally/psychologically healthiest way to cope. For me, at least.

So maybe I’m focusing now on what I’ll later consider trival. Whatever. That’s what’s on my mind today. Tomorrow I’ll look for answers to the next big question, whatever that turns out to be. :smiley:

Thanks again!

Karen

Hi Karen,

I’m not a dialysis patient either, but worked as a social worker with dialysis patients, including home hemo and PD patients, for 18 years. As one of my friends on dialysis once said, it’s important to dialyze to live, not live to dialyze. Hopefully you’ll find a way to make kayaking work for you or, if not, you’ll find a new sport that gives you as much pleasure.

If you’re unsure about whether home hemo or PD would work best for you, I’d suggest that you call the clinics in your area (see Find a Center from the Home Dialysis Central home page) to see if there is a waiting list for training for PD and home hemo, what days and times training is offered, how long training lasts, what you would need to do it, and what might be covered and what you might owe. You want to visit clinics and talk with staff and patients if possible. There may even be classes in your area where you can learn more about your options.

Most (but not all machines) require a reverse osmosis water treatment system for home hemo. This is to remove things from the water that might get into your blood and make you sick. Contact your health insurer and ask what it covers for home hemo and home PD so far as set up and maintenance. Insurance companies often look at what Medicare covers when deciding whether to pay for something or not. Medicare covers 80% of the allowed charge for installation of the equipment needed to do home hemo and home PD, even some of the cost to hook the home hemodialysis machine and water treatment system into plumbing and the existing electrical system, as well as follow-up care.

Having pets and riding horses should be OK no matter whether you’re on either hemodialysis or PD. If you do PD, your training nurse will probably suggest that you keep your pets out of the room when you’re doing a CAPD (manual peritoneal dialysis) exchange or when you’re connecting to the machine for CCPD. Once you’ve made the connections and the system is closed, there should be no problem having pets around. You also need to be sure that you don’t do PD connections in a draft (window or heater/air conditioner). Obviously, you’ll also need to wash your hands thoroughly and follow instructions on caring for your PD catheter or vascular access.

So far as exercise and dialysis, I’ve known lots of patients that exercised regularly on dialysis. They often commented that because they sweated when they exercised, they could drink more fluid (within reason). You might want to read the booklet on exercise that is at www.lifeoptions.org/pdfs/exer_pat.pdf and Staying Active with Kidney Disease, module 12 on Kidney School at www.kidneyschool.org. The booklet on exercise advises patients not to exercise in “very hot” or “very cold” conditions. Like with anything else, it’s important to know and accept your limits which means you need to listen to and follow what your body tells you.

It’s good to ask questions and nothing is too trivial to ask. Hopefully other patients, Dori, or I will have answers.

Hello. My husband is now on PD; we’ve just finished our training and are comfortable living with the machine. We treat it like any other piece of equipment we use … we live on a farm and have llamas, horses, goats, pigs, cats and dogs … we have a very active lifestyle. My husband is 72, has had three open heart surgeries, a steel heart valve, and is now determined to live a good, full life using the cycler. Rather than giving us restrictions, our neph has told us to use our common sense … if you broke horses before your catheterization, you can do so again after you’re healed … if you cut and bailed hay before your catheterization, you can do so again and so forth. We definately follow all of the rules about cleanliness … no animals, plants, or kids in the room when he’s hooked up … and we now wash our hands more often than ever before. Our PD nurse is an absolute treasure and made our intense training worth all the time it took. If I have questions, I hope to post them and get your comments. In the meantime, I encourage everyone to live big!

Hi Nancy,

Welcome to Home Dialysis Central! I’m delighted to hear that you and your husband are getting such supportive and common-sense care, and that it’s working for you to fit PD into your lives. Keep on posting!

:smiley:

Actually it is called a “presternal” catheter. I have one. I read nothing about this style for the obese. It is a personal preference and I wish the doctors would offer this choice more. I had to ask for it and then it was not a problem. The research prior to PD that led me to this method was primarily less likely to have exit site infections. From a body image stand point, I like it up high, easy to operate and my cousin has made me a hose holder that I wear around my neck - so no tape for me. As for midwst popularity it was invented at the University of Missouri at Columbia in 1991. Tim

Hi Tim,

PRE-sternal, yes, of course you’re right about that. Thanks for the correction, and welcome to Home Dialysis Central! I’ve been thinking about some topic-of-the-month’s for PD, including LVRO PD and presternal catheters. In the meantime, maybe you could describe what it looks like for folks, and how it works? (I’ve never been quite able to figure out how a presternal catheter drains, for example). A photo would be awesome, if you were willing to share. In fact, we’d love to get your story if you’re game…

I found this article by Dr. Twardowski from Columbia, Missouri, who developed the presternal catheter. It has been used at the University of Missouri since 1991. The article describes the presternal catheter’s design, how it’s put in and taken out, and long-term results, and provides some comments. There is a drawing of the presternal catheter that shows what it looks like is inside and outside the body. It’s not as good as a picture, but help you imagine what it’s like. It appears that using this catheter opens the option of PD to many people that would not be considered PD candidates with an abdominal catheter. Hopefully the technique is spreading.

www.uninet.edu/cin2001/html/conf/twardowski/twardowski.html

The presternal catheter drains in the same fashion as the abdominal catheter, only it lives twelve inches higher in one’s body. Why would you think it would drain any differently? Since there is more length of hose, some report slightly slower drain times, I do not.

Also, with the presternal catheter wrapped in it’s hose holder supported by a chain, there is no tape and no pull against the cuff. This is especially important while sleeping - it’s secure and I never ever use tape.

And yes, as soon as I finalize the design, a web site will market this product for use by both presternal & abdmonial PD patients.

Tim (tim.dellert@charter.net)

That sounds terrific. When it’s up, please let us know your website address so we can link to it.