By Linda Gromko, MD and Jane C. McClure
Home dialysis offers unparalleled advantages for many kidney patients. Yet, living with home dialysis can make a family feel like they’re living in an Intensive Care Unit! It’s easy to get discouraged or overwhelmed. We (Linda, the doctor, and Jane, the designer) are here to help you set up your home dialysis unit so that your life is as comfortable and as convenient as it can be. Over the next few months, we’ll bring you a number of practical tips and guidelines that can help you live well with dialysis – without feeling like it’s taking over your whole life! Why do we care? Because we are strong advocates of home dialysis; it was the best possible gift we could have given to Steve to make his life better.
Here are our top ten considerations as you start to think about setting up dialysis in the comfort of your own home.
1. Where will you perform your dialysis?
Unless you are doing overnight treatments and must dialyze in your bedroom, you may want to consider dialyzing in a den or family room. A formal dining room can work beautifully. Just make sure there’s room for the dialysis chair – fully extended – and for the Care Partner to work with enough space and comfort.
2. Is the necessary plumbing easily available?
You’ll need a sink, bathtub, or toilet in which to drain the dialysis waste line. You can connect two hoses together to make a longer waste line. In our book, “Arranging Your Life When Dialysis Comes Home,” Jane shows you how to build a Pass-Through in an existing wall – if you have the skills to do this, of course.
3. What does your “patient” want to do while dialyzing?
Watching TV is a common activity, but reading (particularly an e-reader) or listening to music may be preferred. The point is: ask!
4. Will the Care Partner have a comfortable place to work?
Steve’s nephrologist used to say that doing home dialysis is like boiling potatoes – You can do other things, but you must be close by in case your potatoes boil over! True enough! It’s important that the dialysis helper has space to work with the dialysis, but also to have a work space for paying bills, working on the computer, or doing whatever else might be needed. Just think and plan ahead.
5. Can emergency personnel reach the dialysis recipient easily?
Even if the dialysis recipient is relatively healthy, you could have a situation where you need to call 911. Make sure emergency personnel can reach the patient easily. Think ahead about direct access without steep stairs or narrow spaces to navigate.
6. What is your storage situation like?
We’ll devote an entire blog to storage and organization – these issues can make or break you! Some people store all their supplies and equipment in their dialysis room; others use a clean garage or storage shed. We recommend that you always have enough supplies for at least one additional treatment close at hand. That way, you’ll always have back-up supplies.
7. How will your dialysis unit “flow?”
As you envision your dialysis area, plan for enough room for the helper to move easily around the patient and equipment. The Care Partner’s ease and comfort are important in making the whole process go smoothly. Think “ergonomically.” That is to say, plan that supplies are kept within easy reach, so nobody ends up with a strained back.
8. Plan for waste, recycling, and proper clean-up.
If you organize ahead of time, your treatments will take less time, start to finish. Break down cardboard boxes as you go; plastic wrappers for IV and dialysate bags can be recycled, so set up a recycle bin from the beginning. Sharps containers for disposing of lancets, needles, and fistula needles come in many sizes. If larger ones will be more convenient, you can order these at your local pharmacy. Sharps containers are taken back to the pharmacy when full, and disposed of as medical waste – for a small fee.
Large wicker baskets, like the lidded hampers you find in import stores, make excellent waste receptacles when lined with yard waste bags. These hampers are also great for grouping cleaning items together, i.e., antiseptic wipes, a roll of paper towels, extra garbage bags, etc. Don’t forget to place a washable area rug at the foot of the dialysis machine to give your own flooring protection from blood spills. Roll it up between uses and store it in your dialysis cart. Remember, the extra minutes you save belong to you!
9. Create a station for your pre- and post- dialysis monitoring.
Very simply, you will need a kilogram scale, a blood pressure cuff, a clipboard for recording your patient’s data, extra batteries for the blood pressure cuff and scale, and extra pens and log forms for recording your data. If blood sugar testing materials are needed, have these at the ready also.
10. Have you provided for safety and backup?
This is so important, we’ll devote a whole blog post to this topic, but here are the basics to get you started. Always have a fully charged phone available in case you need to reach a hotline or 911 for help. Tape your emergency numbers on your dialysis machine so you don’t have to hunt for them. Be sure to have a flashlight charging and ready to go before starting any treatment that may take you beyond daylight hours. Keep your instruction manual and emergency instructions, e.g., how to perform emergency or manual rinse back, in a consistent place so you know where to find them each and every time. The same applies to the “Clamp and Cut Kit;” this is the emergency pack of equipment you would need in a dire emergency like an earthquake or fire – so you can get the dialysis recipient off the machine, and out of harm’s way ASAP.
We admit that all of this may sound a bit daunting. But notice how much we stress consistent, just-in-case preparations. Hopefully, you will never encounter anything so serious that you need the Clamp and Cut Kit, but it’s smart and safe to think about all of these things in advance, and build them into your systems from the very beginning.
So, is all this possible? Of course it is! Admittedly, it takes some planning ahead and some flexibility. Remember, the end result is an easier and better life for you and your family. It’s worth it!
Linda Gromko MD is a Seattle Family Physician who assisted her late husband with both home hemodialysis and peritoneal dialysis. She and Seattle Interior Designer Jane C. McClure co-authored the book, “Arranging Your Life When Dialysis Comes Home: ‘The Underwear Factor.’”
Join them in a four-part series on Setting up Your Home Dialysis Unit. Later blogs will include: Part 2: Setting Up with Safety First, Part 3: Designing Your Dialysis Unit, and Part 4: Storage and Organization Solutions for Home Dialysis.