My "helpful" friend keeps sending me articles and info on Stage 4 CKD. Probably because he's worried about me.
Most of the medical articles and others have charts for prognosis based on age and CKD Stage.
For Stage 4, over age 55 or 60, they say prognosis of life expectancy is 6 years from diagnosis.
I don't feel like it's that grim, am I the only one?
I think if we watch our diet, follow our Dr.'s plan, have dialysis when it becomes indicated that there is lots of time left.
Why do medical professionals post these studies? I don't know why they believe that is true, unless they are meaning without treatment that will be your survival rate.
I think we are all different and no one can really say we will live this long or that long. Doing what we can to stay healthy, eat right, exercise and keep informed is all we can do. Why do they post those studies? Because they get paid to make the study and then to publish. It then goes on their CVE. I'm 79, stage 3b, maybe, CKD, have T2 diabetes, also COPD, about 60% lung function. Also have IBS, AR and chronic random pain. According to all that I should be dead now but feel great except for the pain.
Yes, I do like to be the exception. I believe the studies are reliable as far as they go but there is more at play here than just medicine. I believe in Science but there is so much more going on that we just don't know. I never get sick.. last time I had the flu was in 1956 or 58, forget which year, and never get a flu shot. I also have no reflexes. Whatever that might mean
I never get a flu shot and never get the flu either. My friends who get their flu shot get the flu because the vaccine didn't cover the correct flu strain.
You sound like you come from hearty stock. Keep up the great work.
I've seen the statistics on what I have on my laundry list but🙄~~~it is like the fellow who lives to be 110. When they ask him his secret he says, "I drink some good liquor and smoke 3 Cuban cigars a day."
There are no guarantees or death sentences, I believe. When it is your time comes you don't have a say! It just makes sense to take the best care we can and try to enjoy our life as much as we can and plunder forward. I know your will agree that a great pet is a bonus to positive living, hey....we can control certain things but not everything.
I'm a positive and spiritual person. I kind of look at living with illnesses as DUSK.....not everyone gets a 'dusk'..... for me it is when we know how precious our time is and I want to spend as much of mine as I can, savoring it. Definitely....a cat helps. Didn't mean to get so heavy, Sophie~!💕
Like most everyone here, I work to control the stuff I can with CKD and try not to worry about the rest. Once I've done my part of eating right, exercising, and getting sufficient rest, etc., I try not to obsess about the statistics. I've beat many statistics in my life time and treat this condition the same way. To being the exception!
Hi Sophie: I think alot of that info is based on statistics and not necessarily on specific research. Amazingly, some people want to know how long they have. Many years ago, I worked with cancer patients in a hospital and thats one of the things they thought about most. Anyway, as far as I'm concerned, I agree with you. No one really knows. And, who has an exact "date" of diagnosis? So many of us were testing out as having CKD way before we had a formal diagnosis. The other day, I found a 2016 lab report showing a GFR of 31. Today , its 27 and for quite a few years, I paid no attention to diet as I didn't know and I'm in my 80s. God bless my dad who used to say about such issues that everyone has a number on life's calendar and when your number is up, it's all over regardless. Hoping we can all enjoy some part of everyday and not worry so much about tomorrow. Take care of today as best we can and not worry about those statistics. Glad you're doing well.
I totally agree. I have stage 4 CKD, liver disease, heart failure, AF, fluid on my lungs, bowel disease and arthritis. My son is a doctor and has told me that I’ll be lucky if I live for more than 18 months. I can’t exercise but do try to eat healthily. There’s nothing else I can do but I refuse to take it as seriously as my son would like as I’m not prepared to worry about it. Hopefully I’ll still be here for my 60th birthday but if I’m not, I won’t know.
Studies can have good info but be disheartening but they are all about averages and give a limited view based on the study. So many on here show how fighting for better health is definitely raising the quality, and I believe longevity, of our lives.
And Happy to see your post again! While I don’t post often I’ve gotten lots of good info from everybody and was worried when I didn’t see you posts for awhile!
Stats can be helpful in planning, but when it comes down to it, willpower, knowledge and self-discipline are the only factors we control to influence our longevity. Death is not to be feared as it is a normal part of life and dwelling on this is wasteful. Quality of life IMHO is far more important than longevity, so find the balance to enrich your life, without compromising your lifespan by self-indulgence. Be strong and love your people, pets, nature and life!
One major problem with studies is they are mostly done on males. While some may hold true to both male and female there are certainly enough that make relying on studies suspect. Stats can be manipulated to show whatever result you are looking for. Take all of this with a grain of salt and remain skeptical.
I agree with you Sophie. Personally I think doctors feel pressured when asked to give a prognosis and always err on the side of caution i.e they give the worse case scenario!We can't live our lives worrying and stressing about what may or may not be, we just have to control the things we can control and get on and live our lives as best we can.
Hey Sophie I feel each of us are different. I don’t really put much in to study. I did stay at stage four for five years . In this last year I been in stage 5 . I’m 65 . I try to do the right thing diet and exercise. I’m not on dialysis yet I’m staying 11/12 gfr I get a little tired when I overdue thing so I’m learning not to do that . I had my check up yesterday and doc said my numbers were as saMe as last month on my labs . I thought we would be having the dialysis talk seriously yesterday but he said feeling as good as I do I will see you back in June. He told me a lot of people are in denial how they feel. He said I can look at someone number and they tell me oh I feel great but there creatinine showing him in one case a 10 in his other labs are high I forget the number he said he will look at the partner who came with them and they are shaking there head like no they aren’t telling the truth. Take care of your body don’t feel grim but do take stage four seriously so you can stay in it as long as you can. Positive attitude always help .
Hey Sophie,There's serious, there is careless and then there is addiction. Somewhere in between is where we need to be. My new normal may be different than yours. Those statics are actually designed by insurance companies and not scientific at all. Doctors say the worst case to prepare patients in case. I do not ever listen to those numbers or those statistics. I would be dead according to that one you posted. Do not take it to heart.
Do your best, follow your diet, stay healthy and you can have a great life.
I hope my autoimmune disease will slow down. The only thing left to attack is my heart. It's already got my kidneys and lungs.
I keep on my veggie diet that I've been on for decades and follow my Neph's advice. I under worry if anything. I'm the least anxious person I know, I'm too fatigued to get all stressed out : )
My first Neph gave me that grim news...a few years later he fell off a Cliff and died...that was over 25 years ago...yet here I am..Rocking It.... Whenever I read Statistics like this I always ask if they let God know that...
Um..they call it the silent killer for a reason, so either get with the program or find out first hand why that is. You got a good friend. I'd you can't do it for yourself then do it for them
I haven't given up at all. There isn't a lot to be done since mine is a result of my autoimmune disease not a comorbidity of HTN or T2D. I have low BP, low potassium which I have a prescription supplement for from my Neph, and I've been on a plant based diet, vegetarian since age 10.
I read on other forum where people are so worried in Stage 2, so I wondered if people got too concerned about statistics. I've been proving Drs wrong for years : )
I am convinced nobody knows, not even the Drs! I was in the hospital in 1995, Dr told me I had 5 years to live, and I'd be on dialysis the entire time. I got off the dialysis, and have lived 27 years so far! In 2018 another Dr told me I wouldnt last 6 more months without dialysis.I am still not in dialysis today, and not planning on it. My new dr says my positive attitude plays a big part. When i was told I'd have 6 more months, I became totally depressed. I say Drs should not tell you that unless you ask. I didnt ask! After 6 months, and I still felt OK, i went back to my hobbies and enjoyed life. Am i in denial? I dont know, I just dont worry about death
Sophie, I was on 3b for a while and was not paying attention to CKD except go to the dr every 4 months and he would keep saying you are stable though the GFR kept dropping a little each time. No special recommendations on diet from him etc. Then last July he said you are borderline stage 4. That shook me and I started researching and from what I found the prognosis was 5 years on stage after dialysis was started. I got a naturopathic book online and along it was a 30 min kidney yoga. Started that. Went to a dietitian and started watching protein and potassium and other stuff. Got a puppy (part of retirement plan anyway) and switched nephrologist. The new one says the same, GFR has improved by 1, so technically back at 3b. He’s more responsive and answers questions better. Bottom line, I don’t think they know anything about prognosis. Most of them try to give upbeat information so as not to spoil your quality of life and not put too many restrictions.
Had it not been for the pandemic I would’ve love to travel more. Looking forward to my pet and possible grand kid.
My Neph never said anything about prognosis, and I never asked. I'm Stage 4 from an autoimmune disease. I guess I feel like my autoimmune disease is my health problem and I don't think so much about the new added CKD since I've been dealing with autoimmune problems since my mid 20's. Now 40 years later it's just one more thing. I'm just relieved it doesn't hurt like my other problems : )
I hope you and your dog will get to go on some travels together.
When I first got my diagnosis I searched for stats and found this article. It was very depressing. I still find it depressing. My mother also has CKD and was given 6 months to 6 years. So far she is at 2 years and seems stable for now at 3b.
I wish I had my grandmother's (my mom's mom) medical info/labs because she had a massive stroke at 40, very high blood pressure most of her life. Her doctor said her kidneys where the size of peas towards the end of her life, so I'm assuming she also had CKD. She died at 89 from heart failure. So I wonder.....maybe she beat the odds....?
Anyways one day at a time, taking good care of ourselves and doctors who will take good care of us hopefully will make a difference.
Sorry to hear about your family. It seems like you got a bad gene pool like I did. I inherited an autoimmune disease from my mother and migraines from my father. My CKD is autoimmune related. I have 4 leaky heart valves from autoimmune so I have heart trouble but not from CKD which it does contribute to.
With your positive attitude I'm sure you'll do well with the course of your disease. Attitude and diet can make a world of difference.
I liked that NIH article. According to the article, a lot of the data was 10 years old in 2016 and treatments have improved for cardiovascular. Most of the increase in death rate was from Cardiovascular, not directly from kidneys. Also, proteinuria of greater than 50 mg/umol was part of the equation, and a lot of people on this forum are able to reduce proteinuria with diet, and some people don't have it in the first place, so what about us?
Also attitude makes a big difference (in my experience, not in the article) for individual cases. So, Sophiebun11, I'd say your relaxed but fairly careful attitude is perfect. Take home for me was all the stuff about heart health and exercise and diet and weight, which are under my control, definitely applies.
Most articles say that heart problems are the cause of death with CKD. There are always those of us who can beat the odds and attitude seems to be a key element. Look at all the long living comedians like George Burns and Betty White who were nearing or at 100 y/o.
My grandmother died of CKD but not until she was 96 y/o.
Hi Sophiebun11 and all the other exceptions to the rules, me included. I'll be 60 in june and was diagnosed 5 years ago at the age of 55 so statistically I'm a dead woman walking as i fall smack bang inthe age category of the study. Yet despite multiple, too many to bore you with, co-morbidities I'm still kicking. With an e GFR of between 12 to 14 at times and as high as a whopping 22 at others and not having dialysis my neph told me a year ago this April that i only had a few months to live at best and 3 weeks at the worst as i had an antibiotic resistant kidney infection with a temperature of 105 and at risk of full organ failure. HA!!! still hear a full year on. Doctor doom doesn't like me cause i proved him wrong. Mental health and qulity of life are the best weapons to fight with. I know another infection could carry me off next time but till then I'm busy getting on withthe business of living while I'm supposedly dying. I love the widlife outside my window and my sister who cares for me and my lovely warm bed. For me that is my definition of quality yours might be something else but i think you have the balance about right for you. Except for the paon, i have crippling arthritis and struggle to control my pain as i can't take anti inflammatory medication so i sympathise with you there.
Good for you, keep proving your Dr. wrong and making him mad LOL
I take Tramadol for my pain, it helps some, my Neph said it's ok to take it, but my eGFR is higher around 28 I'll be tested again in a week or so. Maybe it wouldn't be ok for you. I have pain from my autoimmune disease in every joint in my body and muscles too plus OArth.
Best wishes for keeping your eGFR up enough to stay off dialysis and enjoying the wildlife and things around you. A positive attitude and good sense of humor make life much easier regardless of your situation.
I don't understand your post. I would take it very seriously. I was diagnosed with Stage 3 a or b. I jumped right in, went to a plant based diet, read everything I could find, and have reversed my disease to Stage 2. Raised my GFRs from 50 to 64, which puts me in the normal range for my age.
I was diagnosed at stage 4 egfr now 28. I have been on a plant based diet since I was 10 y/o. I have CKD from an autoimmune disease. There is nothing else I can do. I'm not going to freak out about a time frame that others here have beaten by decades.
What are the parameters of the study? If they're just totaling all ckd diagnoses and subsequent deaths as reported by all countries everywhere, well, that's gonna lower the average because not all countries have great treatment options for all patients, so those CKD patients might succumb earlier on average. Also, if they're including everyone, whether they have 5 other comorbidities, addictions, poverty, (it doesn't help your longevity), or whatever else may be the case, that's going to lower the odds as well.
as my primary care dr said to me when I asked him how long until esrd.....nobody knows. You could die from something else before it gets you, be run over by a truck tomorrow, or it could be in 10 years. Dont worry about it. (Easy for him to say lol)
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