Choosing Your Treatment
How do you choose a treatment when you don’t want any of them? This is what some people with kidney failure ask themselves. You don’t want dialysis! You want your life to stay the way it was. And a kidney transplant sounds like it would be most like your old life, but it could take years to get one (if you even can).
Maybe you know someone who was on dialysis and had a hard time. Or, you may not like the word—which sounds like die-alysis. And, “end-stage renal disease” sounds like it must be the end of your life. But, it doesn’t have to be. We know a number of people who have lived for decades after their kidneys failed. It is possible to have a good life—even on dialysis.
The good news in all of this is that there are treatments that can keep you alive. It wasn’t that long ago (the early 1960s) when that was not the case. People with far too many other serious illnesses don’t have a treatment at all—let alone options. You do.
Just 10 years ago, there were really only two dialysis choices:
- Hemodialysis (HD) in a clinic
- Peritoneal dialysis (PD) at home
Today, you have more options. There are two ways to do PD. Three ways to do home HD. And, even in-center, some clinics do long treatments in the afternoon or at night—not just short ones during the day. And, if you try an option and you don’t like it, you can try a different one.
Don’t get too caught up in the details of the treatments quite yet. They ALL look scary when you don’t know about them. You may think, “I could never do that.” And, like thousands of others, you might just surprise yourself with what you can do!
We did a study not too long ago. We talked to people who chose home treatment and others in the same clinics who had the chance to go home, but said no. There was only one big difference between the groups: Confidence. If you choose a home option, you won’t go home unless you and your training nurse both feel confident that you will succeed.
Think About What Matters Most To You
Dialysis can affect every part of your life. So, before you think about which treatment you might be willing to do, first think about what you want your life to look like. Focus on the positive things first—what you DO want. These might be things like:
- I want to eat chocolate. Or cheese. Or tomatoes. I want to eat my favorite foods—but not have to think too much about it or take lots of pills with each meal.
- I want to drink a glass of iced tea or a beer on a hot day and not have to worry about a fluid limit.
- I want to keep my job so I can pay my bills or send my kids to school.
- I want my treatments to fit into my week, so my life does not have to revolve around dialysis.
- I want to travel!
- I want to have a baby.
- I want to have a healthy sex life.
- I want to feel well and have energy and sleep well.
- I want to live to see my kids—or grandkids—grow up.
Then, you can focus on what you don’t want. These might be things like:
- I don’t want to spend a lot of time in the hospital.
- I don’t want to feel like a burden on others.
- I don’t want to go four days a week without having my blood cleaned.
- I don’t want to have a heart attack or a stroke.
- I don’t want to have to cook special meals from scratch every day.
- I don’t want to have to go to a clinic three times a week for a few hours.
- I don’t want to have a machine and supplies for dialysis in my home.
- I don’t want to take dozens of pills every day (and pay for them).
Your list will be unique to you. And what is MOST important on your list is unique to you as well. You know your life best. You know your goals and hopes and dreams. Figure out what matters most to you. Then, when you learn about the treatment options, you can think about which ones will give you the best chance of living the life you want.
Read our Patient Stories. Look for people like you. They will help you see what life can look like with home dialysis.
A Word About Care Partners For Home HD
If you do home HD, most clinics will want you to have a care partner. Some will let adults dialyze alone—it is safer than just getting three short treatments a week in a clinic.
Some clinics want to train a partner to set up the machine, put in the needles, and do all of the work. This is not a good way to help people succeed. It’s a good way to be sure that the partner has burn out and you end up getting your treatments in a clinic.
If you do have a partner, please keep in mind that at the end of the day, this is your treatment. You need to own it. You need to do as much of it as you can. And, you need to show that you appreciate what your partner does do for you—just as you would want him or her to do.
In partnership with MEI, ReMend is hosting MEI’s Home Dialysis Education Modules on our site. In addition we will also host patient articles that we think as a potential dialysis patient will be beneficial in showing you how other people just like you have chosen the best Home Dialysis Treatment Option for themselves. These articles will provide inspiration for how you go about choosing the right treatment option that fits your needs and lifestyle values. But you are not alone in this endeavor, there are many resources to assist you in the process.
ReMend mentors, many of whom have been on home dialysis and in some cases are still on home dialysis are available to assist you in this process. We do not provide medical advice, that is left up to the Doctor’s and Nurses’ that provide your medical support. What ReMend Mentor’s can provide is our own personal experience on how we went about choosing our dialysis treatment option. The issues and obstacles we faced and overcame in our successful journey in living with kidney disease and dialysis. Most of ReMend’s Mentors have successfully undergone transplantation.
How to request a meeting with a ReMend Mentor to assist you on the path to choosing the right Dialysis Treatment option is easy, contact us by phone or email or via your BNMG medical provider.