I had someone ask for advice on making it 19 years on hemodialysis. Here is some advice on dealing with a chronic illness:
No matter what make your dialysis appointments. You will feel better eventually and it will show your teams you are following medical recommendations. I have not missed one in 19 years. Missing dialysis will affect your chances of getting a transplant. They will consider you non-compliant to your medical teams’ prescription for dialysis. You can talk to your medical team about changing times, days and hours. Explain your reasons, look at input and output, look at your blood work together with your team. Then make the decision that is best for YOU.
Extend your time if possible to get to those middle molecules of potassium and phosphorus. Remember kidneys work full time 24 hours. Most centers are doing quickie treatments of three to four hours three days a week. Look into doing nocturnal dialysis. It frees up your days and you do dialysis at night. If it is available in your area. Or look into PD if you can do it. Or maybe doing home dialysis
Your health team should be supporting you, especially your dialysis center team. Ask the dietitian for information on diet and lifestyle changes you can make to help with daily eating choices. Talk to the social worker if you need something. Talk to the doctors and nurses who are there to help you. Most of all LISTEN to what they tell you.
Manage your eating in a well balanced way.Make one lifestyle change in the way you approach food every two weeks. Clean out cupboards of junk food, drop one starchy carb from your eating plan, make a weekly menu including fast food or eating out.
Lean into your online support groups for help.
Get checked out by all of your medical team. Every one of the doctors who are going to have to clear you for transplant and keep those records and appointments up to date. Keep track of things in a small notebook or online.
Be knowledgeable. Know your medical history and prescriptions. Be able to discuss it with doctors.
Gain knowledge and be able to ask questions of the doctors they are involved with.
Keep a log of names of doctors, procedures, who did what and when, that way when you meet a new doctor you have records handy and can discuss names and dates knowledgeably. (wish I did this)
Join a support group. Be careful. Find one you are comfortable with. Use it for support and information as you go through the medical things. Ask questions. Know they are support, not medical doctor’s truth.
Search for information on the internet but only as you can take it. When is too much stop looking. Take a break from info overload. Process what you know.
Do something fun for yourself everyday. A joke, a smile, a game, tea, chocolate, whatever makes you happy for a few minutes.
Know that people act weird around someone who has an illness. Sometimes friends are not around anymore because they do not know how to deal with it.
Do not allow the illness or its treatment to become all-consuming in your life. It is going to take up parts of your life and sometimes it feels like it has become everything, but know these things are not your life.
If you believe in prayer, pray every day. Use your beliefs to help you through tough times. Meditate to calm your brain and body.
Let little stuff go. “In the end it is all small stuff anyway.” Little stuff can cause great grief; sometimes you have to let it go.
Being beyond tired is a place you may feel you are often, rest…take time to let your body heal.
Remember some days have to be taken one second, one minute, one hour, one day at a time.
Dialysis treatments # 2966 and 2967