I am 50 yrs male. My creatinine is 3.5. I am so worried these days for my wife and kid. My mind takes me to negative. Looking for some healing words and what do to keep myself at this level. I am vegetarian by diet and read every before I eat. My doctor says I have 2-3 years left. My doctor says that I am young and have no other issues (other wise) and I have age on my side. Just worried !!! ... how long people can sustain or keep at this level?
Thank you for all healing words that can keep me strong!!!
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Live_Positive
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I am not sure why your doctor would tell you that you only have 2-3 years left to live. You do not say what your GFR is, or if you have other health issues, but that is a pretty crappy thing to tell you. Many and I do many of us live with CKD for years. Full and abundant lives. Some have higher creatinine than you do. I am over 2.5 years now with Stage 4. And even if the kidneys completely fail, there is dialysis. People live for years and years on dialysis. So to give you a death prediction like that was pretty crazy. I would ask the doctor why he said that.... and then I would find another one who is going to support you and help you survive. There is so much you can do.
Just for peace of mind, get your "things" in order to prevent any hardship for your family. Things like preparing a will and DNR and other directives as to how you want your end of life to happen will give you peace. Does not mean it will be tomorrow. It just means you do not have to perseverate on them now. Make sure your family is aware of the documents and your wishes. I feel very strongly about organ donation so if you support that, make sure you provide for that. Organ donation is a the gift of life and the best memorial you can do.
Then, get on with your life and enjoy it. Learn about diet and what other things you can do to help yourself right now.
It's difficult with little information posted to understand why your doctor might have told you that. But for example, I crashed to end stage 3 years ago due to a blockage of stones. They were created from dehydration. My Creatinine at the time was 798 end stage. I lost 98% of one kidney and days away from losing another but that one was saved once the blockage was removed. I too was given percentages. I was told I would possibly be on dialysis within 2 years and most likely within 5. They give your chance by percentage due to what your number is that day but that can change. Do you know what caused your kidney damage? In my case, I recovered from end stage to Stage 3A but it took a good 2 years to fully accomplish. I too went whole food plant based but that was easy for me as I had never been much into meats or dairy. The downside was after 2 years my blood sugars started to rise. Too many beans and chick peas. I could have cut those out and got my protein only from veggies but I chose to add back in poultry. It has not hurt my numbers and today I am visibly much healthier than many of my peers. I know that in my case, the focus of the doctors was on my hemoglobin. It was so low, near needing a transfusion that I was given iron pills. After 3 months, my hemoglobin numbers, still lower than normal, had risen enough they knew the iron was binding which for them was the sign I would recover well.....You need to speak with a kidney dietician for advise as to how much potassium you can eat daily, protein amounts and so on. Once you have that information, make sure you hydrate with enough water daily, stay off of red meat ( u r veggie so no problem) no dark colas and take it from there. Without knowing what caused your CKD its harder to be specific. That said, I have an older brother by 20+ years that was diagnosed in his mid 50s with Stage 3 and today, he's just turned 78 and has only just slipped into Stage 4 due to a diagnosis of something else unrelated. He stopped all alcohol, kept to low potassium veggies although in his case he did eat animal protein but 20 odd years at Stage 3 and he's still never seen dialysis.
The two leading causes of CKD are diabetes and high blood pressure. Have you injured your kidneys in some way? If you are done feeling sorry for yourself get yourself a new physician. The one you have and made the statement you posted must have failed the bedside manner class in med school. Find a new doctor who will explain the results to you. Be sure to obtain hard copies of all of the tests before you meet with the doctor. You can go to the labtestsonline.org and click on the link to TESTS and check on each test where you are either LOW or HIGH regarding the Reference Range. If you have questions after doing that, write them down and ask the physician when you meet. The two numbers you are looking for are your eGFR and Creatinine. Even then, you'll need to re-do the tests in a couple of weeks to see if there is a trend towards low eGFR and high Creatinine.
If you do have either diabetes and/or high blood pressure you'll need to get them both under control. I've had CKD for well over three years but it was only in June of 2017 that I was told I had CKD. That same day I was told that I had my diabetes under control and I no longer needed medications. I still have that under control. My blood pressure is also under control with medications. Since my initial eGFR of 32 and an honest doctor who told me about it I have averaged 51 and am living my life on my terms. There is much more for you to do. To learn about CKD you can go to kidneyschool.org and watch the learning modules. Write down any questions you have and be sure to ask your doctor about them and make certain you understand.
Also, ask your doctor for a referral to meet with a Renal Dietitian. Bring with you as many of your last years' worth of lab results as you can collect and together you and the RD can develop a kidney-friendly meal plan that is tailored for you. This really isn't a diet but part of an overall lifestyle change you must make and stick to. You will need to be doing other things before you meet with the RD. If you are a smoker, stop. If you drink alcohol, you should also stop or cut way back. Your purpose for going on the kidney-friendly meal plan is to cut back on protein, phosphorus, potassium, calcium, and sodium. You will be eating smarter, and as a result, you can slow the progression of CKD.
If you take medications you can use drugs.com and open a free account. List all of your medications you can find out about interactions with other medications or foods. Before you fill any prescription check on the medication the doctor is ordering and see if you should be taking it and at the dosage ordered.
Make up a complete list of all of your medications and dosages and always provide a copy to each physician you meet so that they can know about all of your health issues. This list should also include any over the counter medications/supplements you take. You should stop taking all NSAIDs, like ibuprofen, Advil, Aleve, and aspirin. Tylenol is okay but overdoing that can lead to liver issues. Take no supplements unless someone on your Care Team has approved them.
Make up a list of all of the physicians and other health professionals on your Care Team. My Care Team consists of a nephrologist, PCP, cardiologist, urologist, dentist, pharmacist, and renal dietitian. If you make any changes to that list, be sure to provide all doctors with an updated copy. To stay on my list the doctors must give me full and complete details about my health issues and not hold anything back. The doctors are expected to give me their best medical advice and then support the final decision I make regarding treatment. I also expect them to share lab tests and diagnostic test results with other members of my Care Team. If a doctor can't or won't do that they get fired and I find a new one. It's my life, my health and if they aren't helpful then I can't use them.
If you wish to see some recipe ideas for CKD you can go to davita.com and click on their RECIPE link. Those recipes are not to be taken at face value. You will have to adjust to your specific needs. For example, I am limited to 8 oz. of protein each day. I do not eat red meat. I get my protein from vegetables, chicken, and seafood. If you would prefer to go either vegan or vegetarian you can speak to the RD and develop the plan accordingly.
Processed foods are also off your meal plan. The same goes for fast-food, and restaurant meals in general. You are largely unable to control the cooking and ingredients used and this can cause issues for your kidneys.
There is a lot more you can do but this is going to get you started. Best of luck and stay safe.
I don't know why Drs do that to us. I have passed my Dr's use by date by some months, I was also given 3 years, is that a standard figure? Al they accomplish is panic, something we don't need.
Just hit grf 52/1.73 today and feel I'm managing CKD better than my Dr who is about to lose a client!
I have improved my gfr over the last 7 months after she robbed me of 12 GFR points through prescription medication. I'm close to being back to the GFR I was 7 months ago.
I would like to think I have some answers but most likely it has been just plain hard work and dumb luck!
I have a diet that I don't particularly like but the upside is I can taste the food and now shy clear of processed foods with all the salt, sugar or substitute chemicals man makes to corrupt taste buds into fool us we want more. It is some what of a kidney diet with the needs of all the other crap going on with my health mixed in. Something is working.
I was told by a perspective new Dr I should not worry until I get to GFR 30, then I should be more concerned, I think he might have just won a new client!
Everyone has given you great advice. I am in agreement....CKD is hard enough without having a great doctor that is willing to work with you!!. I feel it is vital for you to not only have a great PCP but also a Nephrologist. This team needs to work together for YOU!
Learn as much as you can about your kidneys and your disease. Knowledge is everything! The more you know the less scary this whole Kidney Journey is.
I was diagnosed with CKD in 1992. I had a kidney transplant in 1999. I am living strong 20 years now since my transplant. So, just because you have been diagnosed with kidney disease does not mean you only have 2-3 years left!
It's not clear from your post if your doctor meant you had 2-3 years left to live, or 2-3 years before you were End Stage Kidney Disease and will need dialysis. I would hope he meant that latter, but it really depends on how stable your kidney function is. Once you hit stage 5, then it might be accurate to say you could live for 2-3years at stage 5, if you don't start dialysis or get a transplant, but I don't recommend it. You do have other options at stage 5.
You didn't say what your GFR is, but using the info you provided about yourself (50 year old male, creatinine 3.5), an online GFR calculator gives you a GFR of 19, stage 4 CKD. This number could vary based on some other factors, such as the lab you're using. but not by very much. At stage 4, it is recommend that you start planning for dialysis or transplant. You're only about 4 points above stage 5 at this time.
Also, what caused your CKD? If you have unmanaged or poorly managed diabetes and/or hypertension and you get those under control, then it might be possible you could stabilize and perhaps even improve your kidney function. This will give you more time at stage 4.
Have you discussed your situation with wife? You might want to discuss transplant options with her. If she could be a donor, even if she isn't a good match for you, this could get you to the front of the transplant waiting list. You could get a transplant before you even hit stage 5 (which is the best time to do a transplant, BTW).
So, you have some "action items" to do immediately if you want a better outcome:
1) Make an appointment with your nephrologist to discuss what is the reason of your CKD and if there's anything else you can do to prevent things from getting worse. Perhaps a biopsy is necessary.
2) Regardless of the reason for your CKD, get your blood sugar and blood pressure under good control, if they are not already. Your doctor may need to adjust your medications.
3) Review all medications you currently taking with your doctor as some medications can do kidney damage if taken over a long period of time.
4) Make the diet and lifestyle changes others have suggested: healthy diet, no red meat, no dark sodas, no smoking, no/little alcohol, daily exercise/walking, good sleep, etc. Based on your lab results, you may need to start limiting foods high in potassium or phosphorus.
5) As a backup plan, discuss transplant options with your wife. Perhaps she or a relative is in good health and would make a good donor? You can get a list of transplant donor requirements from a "transplant nephrologist" or from a hospital which does kidney transplants. Your GFR is low enough to get a referral to a transplant team (usually a GFR of 20 or below qualifies you for getting on a transplant list).
The worst thing you can do at this point is nothing. Good luck.
For what it's worth, I was told about 20 years ago that I would be on dialysis within 10 years. I'm not. My eGFR is 21, my creatine is 2.27 and I'm doing fine. No dialysis in the near future, either. I know everyone is different but if I were you, I would get a second opinion if not a different doctor
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