I have been on PD now for about 6 months and slowly the time that I stay on the machine has crept up to now 13 hours. It is very taxing for me to do this daily. It interferes with my job, as I am still trying to work for the income and insurance. Is anyone else in the same boat and how do you handle it all? I usually start about 8pm and go til 9am, that makes me rushing around trying to get to work bu a decent hour.
Hi Guynft168, and welcome! I’m soooo sorry to hear that your PD prescription is out of control. There is no need for anyone to be on a cycler for 13 hours a day! If your doctor is having you do this, it may be because he or she doesn’t really have a good understanding of how to prescribe PD to suit your lifestyle. Not all nephrologists who prescribe PD really know it down to the ground. A couple of years ago at a meeting, I heard a session with Dr. JoAnn Bargmann–an international PD expert–about how to tailor the cycler PD prescription to meet patients’ needs (and, obviously, ensure that you are getting enough dialysis to feel your best). She was kind enough to allow us to write up her presentation into an article that we have posted here: http://www.homedialysis.org/resources/tom/200805/. Please feel free to read it and talk it over with your doctor. If s/he is open to some of the suggestions, you may be able to work out a way to make cycler PD fit your life better.
Or, you can:
– Search for a doctor who understands PD better than yours does
– Consider switching to in-center nocturnal HD or a form of home HD (short daily or nocturnal) that will free up your time more so you can have a life.
The purpose of dialysis is to let you have a life, so please don’t give up–this is fixable!
My understanding of the reason for this prescription is that I am a low processor. I do 4 exhanges of 2200 liters, dwell times 1 hour and 50 min and then the 5th one to leave 500ml during the day. I used to be able to do 1 exxhange in the afternoon, but since I started work back full time, I have no space to do it, as I share an office. When it went up to 13 hours, it did a bit of overkill but I got the feeling that this was it and there was no alternative. Im honeslt not sure I understnad what is involved enough to have an intellegent discussion with my doctor to begin to approach this.
When you say “low processor,” I think you mean “slow transporter.” We have another article about PET tests and fast and slow transporters here that you may want to read: http://www.homedialysis.org/resources/tom/200801/. On our chart, it says that if you are a slow transporter, manual rather than cycler PD may be a better fit for your body.
It’s terrific that you’ve started back to work full-time. Asking for a clean room to do a PD exchange is an “accommodation” that might be something your employer would do–or, if your employer has 50 or more employees, may be something you can request as a “reasonable accommodation” under the Americans with Disabilities Act.
As far as talking with your doctor, don’t worry too much about the technical side. What’s important is that your treatment is interefering with your life, and the question to ask is, “is there a way to adjust my treatments so I don’t have to be connected to the machine for 13 hours a day.” For example, perhaps instead of a “mid-day” exchange, you could do a “just-after-work” manual exchange–and put off your bedtime connection to the cycler until a more reasonable hour…
Oops–forgot to mention that you might also want to ask your technical PD questions of our expert PD nurse, Judith Bernardini: http://forums.homedialysis.org/forumdisplay.php/18-Judith-Bernardini-PD-Nurse.
The 50 or more employees requirement that Dori mentioned is for the Family and Medical Leave Act. Employers with 15 or more employees must provide “reasonable accommodations” for people with certain disabilities (including kidney failure requiring dialysis) under the Americans with Disabilities Act unless it would be undue hardship to do so. Examples of reasonable accommodations that someone on dialysis might need include rest breaks if fatigued, a chair to sit in if standing for long periods is difficult, flex-time for starting or ending the day, time off to go to medical appointments, or even a private and clean place to do a PD exchange. The test of whether an accommodation could cause undue hardship for the employer often comes down to how hard and/or how expensive it is to provide the accommodation. None of these examples would be expensive or diffcult to provide.
http://www.eeoc.gov/policy/docs/accommodation.html
Most people do CAPD four times a day – around breakfast, lunch, dinner, and bedtime. If this would be your prescription, you’d only have to do one exchange at work. All you would need would be a place to wash your hands, to store a few supplies (if you don’t want to bring what you need each day), and to connect and disconnect which only takes a few minutes. Unless the home training nurse and/or physician objects, a patient could do the drain and/or fill at their desk so time off for the exchange would be minimal.
The booklet Employment: A Kidney Patient’s Guide to Working and Paying for Treatment has sample physician letters in the back for patients on PD and HD. Talk with your doctor about whether he/she would be willing to write a letter to your employer supporting your need for a space for a few minutes at least once during your workday if you do want to consider CAPD.
As a long-time social worker, I believe it is best on many levels if patients keep their jobs so hopefully your dialysis team will help you advocate with your employer if you require accommodation for your treatment.
[QUOTE=Dori Schatell;19890]Hi Guynft168, and welcome! I’m soooo sorry to hear that your PD prescription is out of control. There is no need for anyone to be on a cycler for 13 hours a day! If your doctor is having you do this, it may be because he or she doesn’t really have a good understanding of how to prescribe PD to suit your lifestyle. Not all nephrologists who prescribe PD really know it down to the ground. A couple of years ago at a meeting, I heard a session with Dr. JoAnn Bargmann–an international PD expert–about how to tailor the cycler PD prescription to meet patients’ needs (and, obviously, ensure that you are getting enough dialysis to feel your best). She was kind enough to allow us to write up her presentation into an article that we have posted here: http://www.homedialysis.org/resources/tom/200805/. Please feel free to read it and talk it over with your doctor. If s/he is open to some of the suggestions, you may be able to work out a way to make cycler PD fit your life better.
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