I was given Sepsis 14 years ago from a heart catherization. Sent home with it and several days later ran extremely high fever. Killed my left kidney, removed it, and fever damaged the left one. I’ve been living the 14 years on the one kidney but am now in 4th stage severe. 21 1/2 percent working. I will be 85 years old 9/2/19… My kidney Doctor has been with the entire 14 years. Her advice is not to have dialysis and to just live as long as possible. I and my Husband agreed with that but now I’m having second thoughts. I am getting very tired, back aches badly so living on Tylenol. Blood pressure is slightly off, and I have little ambition. My Husband is 91 just recently. He cannot be a partner for home dialysis but we have a nice clinic within a five minute drive. I’m looking for opinions from those “in the know”. I must also tell you I’m on a pacemaker and have had a heart attack and received several stents. Also have a stent in the kidney and in both legs to restore circulation. I have some swelling now and then but not bad. Appreciate your input and thank you with my love and blessings. Sue
Sue, you are AWESOME! My only advice: you do not know until you try. Just give it a chance to work. There will some adjustment period for sure.
I’m not a patient, but am a renal social worker with over 40 years of experience. You have a long relationship with your kidney doctor. I hope to share some things for you to think about and possibly discuss with your kidney doctor.
You say your kidney is currently functioning at 21.5%. How much has that value changed in the last month, 6 months, or last year? How are your other labs doing? You say you have “little ambition.” If your energy level is off and you get tired easily, you may be anemic. Many people with kidney disease and kidney failure become anemic. There are drugs that can help that, The FDA recommends that healthcare providers wait to start drugs for anemia until your hemoglobin is less than 10. If your hemoglobin is low, be sure to explain to your doctor how this is affecting your day-to-day life. Some doctors assume that the elderly are less active, but if you have to shop and keep up your house that takes energy and endurance. Ask your doctor whether EPO and/or iron could improve your quality of life.
Research has shown that there isn’t a survival advantage to starting dialysis too early. Many people don’t start dialysis until they have a lot of symptoms (shortness of breath, swelling, nausea/vomiting, lack of appetite, food tastes funny, etc.) or their kidney function is less than 10%. Depending on how fast your kidney function is changing, you may not need to make the dialysis decision for a while. Medicare covers medical nutrition therapy for people with 50% kidney function or less. Your doctor could refer you to a dietitian who could help you learn what foods to eat and which to limit to possibly extend your kidney function longer. You can read about this here - https://www.medicare.gov/coverage/nutrition-therapy-services.
When deciding whether to do dialysis or not, think about what matters to YOU. My Life, My Dialysis Choice is a tool that allows you to look at what is important to you about your lifestyle, health, and family/partner. Check it out. You can find it at https://mydialysischoice.org/.
People always have the option to not start dialysis and let natural death occur or to try a month or so of dialysis and choose to stop it if it’s too burdensome. If you choose not to do dialysis or you do it for a while and choose to stop it, I’d strongly urge you to ask your kidney doctor for a referral for palliative care or hospice to provide symptom management and support in the home for you and your husband.