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While being on dialysis is an adjustment for you, for the ones you love, it can be difficult for them to get use to your chronic kidney disease (CKD). When you start home hemodialysis (HHD), the people you live with will see and may experience changes in their lives, too. Many changes, such as storing dialysis supplies, will be easy to get used to, while other changes, traveling with a dialysis machine, can be more difficult. Below are changes you and your loved ones may need to work through when you begin home hemodialysis.
While home dialysis offers more freedom in your dialysis schedule giving you more time in your day to work or take care of your family, you will still need to make time for dialysis.
Your significant other will likely be your care partner for home hemodialysis and will go through training with you to learn how to perform the treatment and what to do if a problem arises. Depending more on your partner may bring up new feelings for the both of you. Keeping open lines of communication should help you work out your feelings and adjust to your new roles.
If you have children, they may participate in certain chores that you or your partner are unable to do. Talk to your children about kidney disease and dialysis and how it is affecting your entire family. You and your family can support each other by dividing up chores, being considerate of each other’s schedules, communicating what everyone is feeling and being clear on what is expected.
Talk to your social worker about adjustments you and your family are making and ask for advice when you need it.
Your house might already be filled with your things. So where do you find the space to store home hemodialysis equipment and supplies? You and your family might have to make room in a closet for supplies such as dialysate solution, needles, medicine and other things necessary to conduct home hemodialysis. You might want to go through things in a closet that are hardly used anymore and sell them in a yard sale. The extra space can be put to good use for storing your dialysis supplies. If you don’t have the closet space, your supplies may need to be stacked against a wall in the room where you perform dialysis or another area where you have space. This doesn’t mean the boxes need to be unsightly. Some people may want to hide the boxes behind a decorative screen, or place a fabric on top of them. The supplies and dialysis machine can sometimes become a reminder of the dialysis treatments you go through, which can be hard for some family members to adapt to. While for some it is an unpleasant reminder, talk to your family members about how this lifesaving treatment allows you to be together and enjoy a good quality of life.
For those who choose to perform home hemodialysis in the bedroom, there may be times when you and your partner are disturbed by the dialysis machine in the room you share. Because the lights on the display can be bright, some people consider buying a sleeping mask if the lights become bothersome. Depending on the machine, there may be a humming noise coming from it while it is in use. You may also find you will need plumbing and/or electrical modifications when using a home hemodialysis machine. Just know that if you decide to do home hemodialysis in a shared space, it may require a period of adjustment. Many people are able to do this within a couple of weeks.
Parents who have small children may find performing home hemodialysis a bit difficult. Some children need to be tended to and the new home dialysis treatment could get in the way of that. Night duty or emergencies with the children can end up in the hands of your partner. This may cause additional stress if that person is also your home hemodialysis care partner. If there is an emergency in which you must get to your little ones quickly, your home hemodialysis training nurse will have taught you how to halt dialysis and reconnect later.
As a person with chronic kidney disease and on dialysis, you will work with a renal dietitian. Kidney diets, or renal diets, for people on dialysis generally restrict sodium, phosphorus, potassium and fluid while including enough quality protein. Your dietitian will determine your dietary needs based on your monthly lab results. People on home hemodialysis may have more liberal kidney diets than those on in-center hemodialysis. When considering your family meals, you don’t necessarily have to cook two meals – a regular dish and a kidney-friendly one. For example, you can leave out salt in recipes and instead place the salt shaker on the table for family members who would like to have some. If you are worried that food for the kidney diet won’t taste good, there are hundreds of delicious recipes on DaVita.com/Recipes to try.
For many families, the key to traveling is planning. If you and your loved ones go on vacation, it is suggested to plan at least a month ahead of time, especially during seasons when the general population travels for summer break and during winter holidays. Many people on home hemodialysis have found it easy to transport their dialysis machine on a road trip. When you do take your equipment, be sure you have all of the supplies necessary to perform your home hemodialysis. If you plan to take a vacation for more than five days, you can have your supplies and equipment shipped to the place you are staying and so they can be there when you arrive. If flying, check with your airline ahead of time about checking in your dialysis machine onto the flight. The dialysis machine should be in a protective case, as if it were another piece of checked luggage. Each airline has different luggage policies, so it’s best to check in advance. If you prefer not to take your equipment with you, your health care team can help you arrange to get dialysis treatments at a dialysis center near the place you plan to visit. Travel may be less spur-of-the-moment in your family, but with advanced planning you can still enjoy family vacations.
Family life can be affected when you have chronic kidney disease and are on home hemodialysis. There may be changes in the family dynamic that could take a while to get use to for different family members. You will also need to make room in your home for equipment and supplies. By choosing home hemodialysis, you may likely have more freedom in your schedule and will be able to continue working or spend quality time with your family. While there will be adjustments with your diet and family travel, by talking to each other and realizing that dialysis is what is helping you maintain your quality of life, your family will likely roll with the changes.
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