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  • New to this and a question

    I was diagnosed with Stage 3 CKD two weeks ago. My kidney doc is a good guy but refuses to answer the question, "How long will I live?" Even ball park. I said to him this week am I dying? He said yes. I said how long will it be? He said "Sometimes it's a while?" I said 5 or 10 years. He said yes but would not be more specific I am 65 and making a decision about retiring. I am a school teacher. I love the kids and would like to keep going but I don't want to start next year and have to take a lot of time off or kick on the job.
    What do your docs tell you?

  • #2
    Hi, I've been on hemo dialysis for 2 years. My grandmother was on hemo for 15 years. If you haven't started dialysis yet, that maybe an option. If you have someone that wants to donate a kidney to you that's great too. Some people at my dialysis center have been on dialysis for 15 to 20 years. Have had transplants that have lasted 15 years. I don't know all of your situation but it's hard to predict the future even when your healthy. Plan for the positive, kidney failure does not have to run your life. You could keep teaching and do dialysis at night. If you want a second opinion get one. You are the only person who can do the absolute best for you. Be your own advocate. Bring a friend or family member with you because they might have questions that you haven't thought of yet. Don't give up, keep fighting for yourself. It's good your asking questions.

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    • #3
      Thanks jnusserg

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      • #4
        Hi. I am also 65 and recently diagnosed with stage 3 CKD. I am going to direct you to an article that I found based on your question about life expectancy; however, I would caution you not to get too worked up about this study b/c it's only statistics. As my oncologist reminded me many years ago when I was diagnosed with an advanced stage of cancer and asked him this question, he replied with an answer that gave me comfort then and now: He said, "Those studies are based on large numbers of people with various health problems, and I'm not treating a statistic, I'm treating you." That being said, you can Google an article entitled "Chronic Kidney Disease and Life Expectancy by Oxford Journals. I hope this helps. Best of luck to you.
        Last edited by EB25oehrl; 04-14-2018, 09:03 AM. Reason: Insert end quotation mark

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        • #5
          Thanks, I'll check it out.

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          • #6
            So it looks like we get 6.2 more years if I'm reading that right. I'll take that if I can feel good the whole time.

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            • #7
              The numbers I found were for a 65 year old female gfr 30-44 is 8.9 - 9.9 years. Oxford Academic , Nephrology Dialysis Transplantation. The name of the article was, Chronic Kidney disease and Life Expectancy.

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              • #8
                Hey della, To be absolutely honest and candid with you, you're going to live exactly.. as long as you're going to live and not one minute more. MY life doesn't have an expiration date on it and neither does yours. I have been on dialysis for 11 years (Stage 5 ) and I'm going stronger today than I was 10 years ago. People can live long happy lives on dialysis. 20 or more years. There are physical factors to be considered such as diabetes, heart conditions and such. Don't waste time thinking about when you're going to die. You can't stop it, it's going to happen.. some day. Focus on your treatment. Educate yourself. Knowledge is power when it comes to diseases. Own your illness. Consider this just a short pause in your life. All those things we thought we're important that aren't. Time to focus on family and friends because as time goes on those ARE the MOST important things in your life. This is not the end. This is the new beginning to the 2nd phase of your life. You are not alone. We are listening.

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                • #9
                  Thanks Grouch. Words of wisdom.

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                  • #10
                    Wow, your doctor is a real alarmist! Geez, I was diagnosed at stage 3, what, 12 years ago? Don't forget that using predictions of those on dialysis also includes a lot of people with other serious complications, like acute diabetes, heart disease, drug abuse complications, etc.

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                    • #11
                      So dac0214, what has changed in your lifestyle? Did you change your diet? What stage are you at now? How are you feeling?

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                      • #12
                        My Dad maintained stage 3 for a few years. He did not behave like he should have until mid course, or else he may have stayed in Stage 3 for a longer period of time. Now he is in stage 4, and having his arm prepped (fistula surgery), when/if the time comes that there is no choice but dialysis. They told us that unless he was suffering with bothersome side effects, they would leave him be, even when the GFR nears 15. Other than being cold, no side effects except a little anemia. At 85, being cold may be as much circulation as it is kidney related! He also has long time, difficult to manage, high bp, AND congestive heart failure. A triple whammy.

                        You likely know, low to no salt, low phosphorus and low potassium in your diet to maintain your level of function as long as possible. You could meet with a dietitian for guidelines. Your nephrologist can likely recommend one if you are not yet on that discipline.

                        I too, do not believe your doctor, especially while you are in stage three, can estimate your life expectancy. I would stay positive, eat well, exercise, and enjoy the family, travel, etc. My Dad has a remarkable attitude and it pays off. He drives, shops, cooks, cleans, goes to silver sneakers, travels, does his own taxes, manages his own investments, and at 85 with two horrible diagnosis! He has learned how to direct the chef's at restaurants so he can dine out! We have found cruise ships that offer dialysis at sea!

                        Obviously Dad is going to pass at some point, but we don't think just because he starts dialysis, it is going to do him in. If he can handle the inconvenience and treatment, I see a few more years in his future. Maybe we are naive, but we are not thinking of death any more than we were just based on his age. We are thinking of hassle and inconvenience as he opted for the in-center dialysis as opposed to at home dialysis. You've got age on your side, and the advancements I read about could well be a part of your future!

                        I offered my kidney, and they said the reason they will not do the surgery is because of his congestive heart failure. Not because of how few of years he would likely enjoy it, or how I might be wasting one unnecessarily. Bummed about that. I know it would be scary to consider taking an organ from a child/family member, but depending on their age and if they are a match, it may be worth discussing. Seems kidney failure does not discriminate from left to right, and why they say folks can function well with just one. I understand the procedure is not that invasive for the giver, as far as surgery/recoup goes.

                        I have experienced some very egocentric type doctors with crummy bedside manners; but, were life savers. I am not sure if you are describing someone like that, or if you need a new doc. I hope you have options if you are not happy. I don't think any doctor can give you a life expectancy number, because for one, they really don't know how YOU are going to behave. For example, are you going to avoid certain foods, avoid certain medications, exercise and drink the prescribed amount of water every day? Some people rather have their favorite foods than extend their kidney function. And too, if you have multiple medical issues, that could play a role in when you might need dialysis.

                        I don't think my Dad is so much a miracle as I do a positive, disciplined, informed patient, keeping up with his end of the deal. I am a huge fan of excelling at what I can control.

                        Blessings to you and your family as you navigate this disease and decisions.

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                        • #13
                          Thanks Bucfish for such a detailed reply. I'm getting a second opinion this week.The first guy wants me to get a stent because one kidney has severe blockage.

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                          • #14
                            Originally posted by jnusserg View Post
                            Hi, I've been on hemo dialysis for 2 years. My grandmother was on hemo for 15 years. If you haven't started dialysis yet, that maybe an option. If you have someone that wants to donate a kidney to you that's great too. Some people at my dialysis center have been on dialysis for 15 to 20 years. Have had transplants that have lasted 15 years. I don't know all of your situation but it's hard to predict the future even when your healthy. Plan for the positive, kidney failure does not have to run your life. You could keep teaching and do dialysis at night. If you want a second opinion get one. You are the only person who can do the absolute best for you. Be your own advocate. Bring a friend or family member with you because they might have questions that you haven't thought of yet. Don't give up, keep fighting for yourself. It's good your asking questions.

                            I am also a teacher. I have 6 years on dialysis and I still teach. I do dialysis from 5-9 on Mondays and Fridays. Sometimes it's hard to wake up the next day. But when you reach the school, the kids energy makes you forget about your disease. I will recommend for you to keep teaching. This will make you feel healthier and productive.

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