Hello, I am the sister and legal guardian of my 60 year old brother who has stage 5 CKD and has completed part 1 of 2 AVF-creation surgeries. We are preparing for dialysis, however, I was made aware of newly released (8/20/2024) study:
Older adults starting dialysis when their eGFR fell below 12 mL/min/1.73 m2 who were not referred for transplant had modest gains in life expectancy and less time at home.
My brother has other health issues and has been holding steady at stage 5 for over a year now. I'm not sure how much time and quality of life dialysis will give him.
Does anyone have an opinion or even better first hand knowledge to share?
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kdonlevy11
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Holy moley Girly... his ONLY 60. That's not what they are referring to. They mean late 80 s and 90s. Jeepers...... give the guy a break. I did not start dialysis until I was almost 70. Be careful with what you read. Look into what they said. First of all, the study was done with only 440 adults, only 20 of them had the mean age of 77 which is pretty close to 80. Too small a sample to be a really good study.
Then look at the limitations: Potential for unmeasured confounding due to lack of symptom assessments at eligibility; limited generalizability to women and nonveterans.
In other words, there was no record of who had what co-morbidity at the time of this really piss-poor study.
This is real garbage and please do not take it for anything worth while. This kind of study, even though if was funded by good organizations, they cannot control the output and that can really screw with us. I am totally in the process of transplant. I know and have read lots of people who get transplants well into their 70s and even 80s.
So if your brother stays at 12, good for him and let him stay off of dialysis as long as he can. However, start the transplant process NOW. It takes years to get one.
Very interesting. I am in a similar situation, I'm 70. My Neph from day1 some 5.5 years ago has pushed me for dialysis throughout. Has not given me any treatment to help me, not even dietary advice to help the kidneys, allowed my bicarb to go well under 22 for over 3 years-until I kicked off. Has now pushed me to another hospital for treatment against my wishes. Thank you for the article.
Hi Hily,Please elaborate re your bicarbonate levels being below 22. Mine has been around 16 now for the last 3 months. What did the Neph do to het yours closer or back to 22 or above.
Over 3 years below 22, a decline from 24, as low as 16 twice. I felt woolly & tired at all times. Struggling a great deal with no support. Cleveland Clinic had good information online so I asked to see my Nephrologist as soon as poss, but he was not available. Another Neph prescribed Sodium Bicarbonate capsules even though I asked for tablets as capsules do not work well for somebody without a large bowel. I had abuse for daring to ask such a question! I took 1 capsule of 500g, 3 times a day. Absorbtion of capsules would be difficult if not immpossible, so I am sure it has taken longer to take effect than they should have. I asked my usual Neph to change them several times, but I don't think he understood English well. 18 months later, I am still on capsules and now at 22 bicarb. I hope to change to another Renal dept soon.
No problem. I am in Wales, part of the UK where expertese is scarce. Having to fight in your own corner is common, so the more you know, the better. Do you see your blood results? Do you understand them? All the very best.
Whales is beautiful. Yes we do bloods monthly and I follow up and research anything that is outside of normal levels. I keep looking for better ways to improve on my BUN and creatine levels. I do have sufficient residual kidney function for eGFR to hover around 13. And fortunately I see pass water normally. On hempdialysis I'm always within dry weight and remove 300mls. I go 2 x a week and consider myself very fortunate. I stay vigilant and watch every move and settings the nurses make to my machine. For especially when I go on holiday, new nurses tend to make so many mistakes. You are very brave and good luck to U 2.
Everyone adapts to dialysis in their own way. I can tell you as a 60 year old on in center hemo after PD failed how I'm doing but that's not to say your brother would be the same. I do well on hemo, work 40 hours a week. I was recently given a stent and told I have coronary artery disease. Still feel great. Started walking on my treadmill. Please don't write him off yet.
60 is really young to be making that sort of decision. He has lots of years ahead of him. I am 83 and just got a fistula ready for dialysis when its time. Current GFR 14. My plan is to give it a try. If its too awful or my quality of life is terrible then I will quit and do palliative care. That is always an option. Good luck to you.
I AM 60, and I just received a transplant! I couldn't feel better about it if I tried. I, too, had an AVF created a year before I started dialysis. Depending on the "other health issues", I say, take the ride. Dialysis isn't all bad. Not when you consider the alternative. And, as others have said, there are ways of warding dialysis off using diet, etc... There IS one more benefit; the day you start dialysis is the day the clock starts ticking when UNOS considers you for an organ. It's small consolation, but it's there.
I don't have firsthand knowledge but did attend a workshop held by Compassion and Choices on ESRD. They talked about a study on this issue. The consensus is that by older adults they are talking about late 70s on and with other health concerns. It's about life expectancy and quality of life. I'm almost 82, in a year or two I'll probably have to make the decision of whether to go for dialysis or not. It's a question of how much longer will dialysis give me and is it worth the trauma of dialysis? At 60 he could have a lot of years and if he can get a transplant even longer
My brother is the first person I ask, however, he is mentally handicapped and I owe it to him to perform due diligence on all options. Thought this would be a great forum to get some first hand knowledge on other's experiences.
I think it all depends how a patient feel and everyone health issues are differnt . But heck 60 is young I am 68 I started pd dialysis at 66 I did it a year and a half I had to change to hemodialysis in June of this year due to fungal infection I feel so much better on hemo dialysis I had to get an port in my chest until I get a fistula in my arm that next Friday . But at 68 I do not feel old I plan to get a transplant one day when I’m not inactive on the list due to medical reasons . I know the one transplant center has no age limit the one told me she just did a 83 year old for transplant I know there are some 68 year old that don’t do as much as I do I know there some 67 year old that do more then I do but this is my body and I am in control of it and I do the best I can but I don’t just sit around feeling sorry for myself dialysis is part of my life and I accept it . Talk to your brother if he is able let him have control of his body ask him what he want to do let him be in charge of his health you can support him when he need it .
Thank you for sharing your experience. I always listen to how my brother feels about it, however, he is mentally handicapped which is why the ultimate decisions are on myself as his guardian. Trying to parse through all information and make the best decision to provide a good quality of life. Thank you, Beachgirl32
You are one of god angel to care for your handicap brother. I’m sure it always hard on you wondering if you are always making the right decisions on his behalf . I know at the center I go to there a paient that has dementia so they let a caretaker come and just sit when she does her dialysis the caretaker doesn’t help any with the dialysis she is there to reassure the lady and this caretaker is able to sit and rest the four hour the lady is there she bring an iPad watches movies and such . So if your brother need your you there you can ask to stay if he doesn’t then that could be your time . If you decide it best for him to do hemodialysis at home I’m sure you can get help if you needed it . Best of luck to you both as I said you are one of god angel every one would not be doing what you are doing bless you
I too have a 62 year old brother who is cognitively impaired since birth. He too has Stage 5 kidney disease. I am his legal POA and I know first hand the difficulty that exists in this type of decision making. I pray we both continue to provide our brothers with the best we can do for them.
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