New to KD, I cannot handle the not knowing.... - Kidney Disease

Kidney Disease

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New to KD, I cannot handle the not knowing... Please help... any support, how long do i have.

69YOScared profile image
124 Replies

Hello everyone... I was just advised I have KD with an efgr of 50 and creatine 1.41. It went down fast. I was told it is 3A. What I do not understand is 2 years ago it went to 52 and not one said anything then it went back into the 60's. I suffer from anxiety and on xanax. Since told Thursday 11/18 I have been an anxiety knot. The only thing I knew about KD is with my cats that when diagnosed they usually passed in 3 years. I also suffer from Siatica but now I do not know if my back pain is siatica or right side kidney. I cannot calm down. My BP went from its usual 118/72 to 142/88. My stomach is a knot. I am saying goodby to my wife already. I do not have diabetes. I am 69 years old Male. Been on xanax 38 years. Weight 168 pounds. I am scared and do not want to die. I am having RFA on Monday to take care of my siatica on both sides.... but, on my right,, how high is the kidney if it is kidney pain. I am so scared and mixed up. I am crawing into a hole and and cancelled Thanksgiving with my wife going to friends. I am crying all the time. Is there any hope.. I know some of you have it worse than me... but I need to be brought off the ledge. How long do I have. I have increased my water intake. That was a big issue the Dr said.. I would have 2 cups of coffee in the AM, a glass of OJ, then nothing to drink until 4 ususally, a glass of wine, then water with dinner and a glass or two of water while watching TV from 7 to 11. Please help.

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Jayhawker profile image
Jayhawker

Welcome to the forum! I think you’ll find much support here. You’ll also find, if you read through the posts stored in the website, that CKD us not a death sentence. Most participating in this forum either have learned or are currently learning how to live well with chronic kidney disease.

I find that my stress lowers as I gain understanding about chronic kidney disease and how it presents in my body specifically.—we’re all a little different. Others will jump in with recommendations for various online websites that provide “kidney school” modules you can complete to learn more about CKD in general.

I’m addition to learning more about CKD, it’s critical to build a solid medical team to help you manage your CKD. If you haven’t already seen a nephrologist, I’d suggest that you ask your primary care physician to refer you to a nephrologist. With effective renal care you may be able to improve your renal functioning. At a minimum you may either see it stabilize or greatly slow its progression.

And finally, go to Thanksgiving. Family and friends are such a great support system.

Your job right now is threefold: (a) learn as much as possible about CKD, (b) establish a solid medical team including a nephrologist and do what they say, and (c) get on with living and enjoying your life. As you wait to see your nephrologist, convert to a low sodium low fat diet. Try to avoid processed foods. Stay off OTC meds like ibuprofen, and drink water (64 fl oz a day). If you drink alcohol you’ll need to cut back on that too.

You’ve actually got quite a lot of renal function left. At 69 years of age with effective renal care you should enjoy a normal lifespan. Bottom line? You are not at death’s door;)

Jayhawker

69YOScared profile image
69YOScared in reply to Jayhawker

Thank you Jayhawker, my wife went out and I am alone and I have chest pain and i know it is from anxiety. I really cannot do thanksgiving because I cannot stop crying. I have to learn more. Where is this school you mention. Do I have to cut out my glass of wine. Do I have to give up my prime rib and hamburgers. Also, Is it possible the test showed incorrect because I fasted the night before? That included no water. I wish I could attach my blood test, natually with no name so someone would know what I am talking about that it was up then down two years ago. And what I do not understand is my endocrinologist did not tell me. He did tell me however that my PSA went from 2.2 to 3.1 so he made me go to urologist. Never mentioned the kidneys. I have had a large prostate for as long as I remember, and I do take testosterone shots every week. I am thinking from looking at the prior tests that my testosterone was high last time I had a low egfr and this time it was VERY high so wondering if that is messing me up. I have cut down the testosterone a bit until I can see the urologist. I AM SO SCARED. I DO NOT WANT TO DIE. Also.... if I have kidney pain, real or imaginative, where about in the back is it. I have pain just above the hip. I thought its my siatica, but now I wonder if I am being treated wrong. I do have siatica as well.

Jayhawker profile image
Jayhawker in reply to 69YOScared

It’s called Kidney School. Here’s the link:

kidneyschool.org/mods/

Jayhawker

69YOScared profile image
69YOScared in reply to Jayhawker

Thank you will review...... hope I do not have to cut out too much..... but will see.. I want to live.

Jayhawker profile image
Jayhawker in reply to 69YOScared

I wouldn’t change your diet radically until you see a nephrologist. As I’ve said, you can get started following a low sodium, low fat diet now. Also cut back on processed foods. Stay away from OTC meds other than Tylenol. And drink 64 fluid oz of water…

69YOScared profile image
69YOScared in reply to Jayhawker

thank you.... don't like what I am reading.... but I have to learn

Jayhawker profile image
Jayhawker in reply to 69YOScared

It definitely sounds like you need to get in to see your primary care internist. You may have something else going on that is impacting your renal function.

My dad had chronic kidney disease. I never knew him when he didn’t have CKD. He lived with it for over 40 years. And that was many decades ago when we didn’t know as much about it or have as many treatment options.

So, you can live for decades with CKD. He had to take medication and followed a restrictive diet as well as specific fluid restrictions. I grew up eating a low sodium, low fat diet with chicken and fish as the main proteins I ate. That was due to my dad’s dietary restrictions.

Mom cooked from scratch so we had few processed foods. When Mom fixed dinner we frequently had 3-4 vegetable options. Two were always low potassium options for Dad. The rest of us would choose what we wanted from the vegetable options at the table. Mom cooked using lots of fresh herbs. She didn’t add sodium to anything. Dad drank 1 cup of coffee at breakfast, decalf. Then he had water throughout the rest of the day.

However, he had much less renal function than you do and his potassium was elevated. You need to eat normally (with exception of low sodium, low fat, and no processed foods) until you see a nephrologist. You may not need major dietary changes. This will depend on your renal panel data specifically. However, drinking water is always a good idea.

I find that staying involved, fir me that’s working full time snd church activities, keeps me from obsessing about my CKD. So, I’m inviting friends over fir a post Thanksgiving event. I’ll serve my left over turkey in a hot turkey salad. I’ll also serve left over pie… We’re going to watch some sports and visit. It will be fun! It will also establish a sense of normalcy. I think that’s critical when dealing with a chronic illness.

Jayhawker

69YOScared profile image
69YOScared in reply to Jayhawker

Have an appointment for next Wednesday, and Urologist the 6th of December. I just need to be calmed down and you are all helping... I feel I will be the one that will be the statistic that will not make it. I am sure it is my history of anxiety and always going to the Dr. early for everything

Jayhawker profile image
Jayhawker in reply to 69YOScared

Large N data is helpful when creating treatments, e.g., medications. But when setting individual treatment plans it’s important to customize the plans to each patient’s specific data. At that point it’s much more helpful to compare the patient’s specific data to subgroups within the pool of large N data. The subgroup with data most like the patient’s data is the subgroup that is most predictive of what the patient MAY experience. I say MAY experience as large N statistics is based on mathematical probability. It’s essentially an educated guess based upon research. But it always includes a certain amount of variance. Consequently, we need to be somewhat cautious when interpreting large N data. Again, it’s critical for our doctors to base all treatment plans on each of our own unique data.

The large N data told me that I’d be on dialysis within 10 years of my initial diagnosis of Stage IIIa CKD. I’m now 12 years post initial diagnosis. I’ve certainly experienced some major challenges over the last 12 years; however, my kidneys are now back into Stage IV from Stage V. I’m not on dialysis yet. I’m taking only two medications related to my CKD, sodium bicarbonate and Calcitriol. I’m not struggling with fluid retention at this point. My severe anemia has resolved. I’m now only mildly anemic. My cardiac health (I’ve been through a lot of testing and am waitlisted for a kidney transplant) is very good. I have minimal calcification in my blood vessels. Essentially, my data beats the norm. So, I can look at the large N data and freak out or I can look at my specific data and realize that I’m fairing much better than the norm and hope for the best as I prepare for any inevitability.

One of the blessings of CKD is learning to live in the moment, enjoy each moment to the fullest. My parents would have been delighted to see me learn to do this… It took me some time to adjust to the diagnosis. But at this point, looking back, I wish I hadn’t spent soooo much time stressing out about my data and attempting to do everything perfectly. None of that helped me. Once my kidneys suddenly plummeted into renal failure, eGFR of 8, the first week of January 2017, I was shocked to find that I was actually relieved. It was as though I thought the major battle was over, I’d be placed on dialysis and move forward. My nephrologist didn’t put me on dialysis though. Instead, I’ve spent the interim 4+ years avoiding dialysis and watching my data gradually inch it’s way back to low Stage IV, eGFR 19. Again, my experiences are unusual, outside the statistical norm. The large N data certainly would NOT have predicted what I’ve experienced. However, my individual data would have suggested that with effective care I could see this sort of gradual rebound…

So, build a strong medical team. Work with them. Give them time to get a handle on your specific data. Hold their feet to the fire to both help you fully understand your data and establish an effective treatment plan for you. Then follow the treatment plan and get on with enjoying your life.

Jayhawker

69YOScared profile image
69YOScared in reply to Jayhawker

I did not know that once your egfr went down, it could go back up. I wonder if thats why my PCP before she does anything wants to give me two weeks of just doing what i am doing, but add water to my daily routeen, and then test... This all came up because my PSA was 3.1 then looked into other items. Forgive me for not knowing what you mean by "large N Data" do you mean the egfr? Did I already ask how old you are...? You have had this a long time..... I am in FL and doubt I can get a Kidney if i needed one. What are you eating to enjoy life? I enjoy eating out with my wife.

Jayhawker profile image
Jayhawker in reply to 69YOScared

All statistics are based on a distribution of individual data points. When plotted those data points fall into a normal distribution, the bell curve. This set of thousands and thousands of data points is often referred to as large N data.

When you read information about outcomes, e.g., life expectancy for a person with Stage IIIa CKD, what you are reading is based upon the average outcomes for persons with Stage IIIa CKD. However, within the normal distribution a percentage of the data points are above the average, these people with that data live longer. Others fall below the average, these people live fewer years.

So, you may be a person who “beats the odds” or whose data falls above the mean. If so, you will experience better outcomes than average or expected.

Jayhawker

Jayhawker profile image
Jayhawker in reply to 69YOScared

Yes, I’m sure your PCP will run additional testing to verify it refute the original testing data.

Sophiebun11 profile image
Sophiebun11 in reply to 69YOScared

Stop drinking. It will only make you more depressed about your imagined death sentence and it isn't good for your kidneys.

Take some deep breaths. Relax and start reading the kidney school modules. You'll find there is nothing to cry about.

69YOScared profile image
69YOScared in reply to Sophiebun11

Have to do that slowly, less and less each night.. its more of just a taste now that I was told.

Bassetmommer profile image
BassetmommerNKF Ambassador

So, you are not going to die, at least not from CKD or soon. Worrying is worse than your diagnosis.You are at a livable stage with stage 3 a. Simple modifications can keep your kidneys there for a VERY long time.

So, to answer your questions, yes, give up beef, especially prime rib. Hamburger, if low fat like a 90% once in a while is ok.

Beef, prime rib, is very hard on the kidneys and in general, not good for you. Very high in fat and cholesterol. Wine.... can be ok but check with your doctor and keep it to one or 2 small glasses.

Kindey pain is not usual at stage 3. I bet it is the sciatica. Fix that and see what happens.

Taking care of yourself is not a death sentence. You say you see an endocrinologist. Do you have diabetes. If you do, then keeping your sugar steady and low will make a big difference.

There is much more for you to do but most importantly, take a breath. At this stage, you can really make a difference and live a LONG healthy life. It's up to you. There is a ton of information on the National Kidney Foundation web site to get you going.

Come back with more questions. BTW I have had CKD for over 12 years and Stage 4 for over 4 and I am just fine. Hang in there.

69YOScared profile image
69YOScared in reply to Bassetmommer

Can I ask how old you are.... I so much love to go to the Outback and get a prime rib. I live in FL and believe it or not, I do not like fish. Also there is a place down here that I get a corn-beef sandwich that I love. I love Meat, and how do I change my wifes life. She enjoyes meat too. Before all meat went up, we stocked our freezer with prime ribs, and a lot of filet steaks. I guess I do not know what else is out there to eat. She also does cook chicken. So I guess that is OK. I do have to drink more water... my usual day cosisted of orange juice, 2 cups of coffee with a danish or something.... no water all day, 2 glasses of wine at 4, then water with dinner at 6, minimal water that is, then 2 glasses of water while watching TV from 7 to midnight. No wonder why i never had to pee overnight. My urologist said with the prostate I have I should be peeing a couple times a night... but now I know why. Since I was told last Thursday, I have had water next to me all day.... constant drinking water. And yes, now I am up 3 times a night to pee. My PSA is 3.1 that my next problem. Thank you for your support and giving me the education to put off my death sentence. Today I have only taken 1.5mg of xanax since waking, and yesterday by this time 3mg. My usually dose of xanax is 2.75 is a give normal day. Cutting down very slowly 1/4 mg about every month until this hit.Thank you again.... and have a good Thanksgiving

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to 69YOScared

So to answer your question I was in my mid-fifties when I was diagnosed with stage 3. I did not do anything and had other comorbidities which made things worse. Since I took control at stage four. whihc happened with in the last going on over four years, I have been extremely steady in my numbers and actually made some improvements in my labs. As far as not eating certain things. It is a choice. Think of it as poison now and how much damage it can do to you. That will change your mind really quickly. I used to LOVE prime rib. But then I started having gallbladder issues and gave it up. Then slowly I eliminated all red meat in 1986.... none, nada. I do not miss it and actually get grossed out by it. In the first part of this year, I stopped eating all animal products, except for some cheese and low fat but real butter. In other words, I went plant based. Really made a difference. Brought my numbers up. YOU don't need to go that far.

Hydration is key. If you were dehydrated when you had your last labs done, it will reflect in the values. Make sure you get tested again in three months and drink lot of water the day before. I drink close to 64 ounces daily. It is a lot, but build up to it slowly. Even if you do not like water, it is important to drink hydrating fluids. Wine, alcohol and coffee are all diuretics and work against you. Water, non-caffeine teas, and flavored waters are best.

I am glad you calmed yourself down. We all have been there and YES, it is scary. But it does not mean the end of your life. Small changes here and there will make a big difference. As far as your wife goes... I am sure she will learn to support you in your food choices. It all, it is healthy for everyone.

69YOScared profile image
69YOScared in reply to Bassetmommer

Thank you... I am just in anxiety overload... it is added by the holidays with no family in the area. We have no children, so I just keep hugging my wife....I cannot leave her with this huge house.

Jayhawker profile image
Jayhawker in reply to 69YOScared

Don’t underestimate your wife. She may well rise to the occasion and shock you with her “can do” spirit. But, you do need to give yourself some time to us adjust too.

Jayhawker

69YOScared profile image
69YOScared in reply to Bassetmommer

I forgot to answer your question about diabetes. No, I do not have diabetes. It was a endocrinoligist that put me on Testosterone when I lived in MA so i just figured I needed an Endrocrinoligit for it down in FL.... I have since found out, my urologist can do it. Its funny, but typical for FL, now that my numbers are wacked with the PSA at 3.1 and the egfr low, the endo wants nothing to do with me and sending me back to PCP and urologist who does monitor my prostate and did do kidney ultrasound last may and did not find anything out of the order. He also does cystoscope and he shows me the bladder and all was good... just the prostate is squeezing the pee pipe and he may want to do Rezume on me to let me pee better. Thank you all for helping me be at a better piece of mind. My PCP is going to do another blood test in 2 weeks , but she wants me to drink more water.... Is it possible with drinking more water, it could show a more normal value, or i am already damaged goods.

Tuolumne profile image
Tuolumne in reply to 69YOScared

Yes, if you're dehydrated, sometimes that will temporarily make your GFR go down. With more water, it may go up above the minimum "normal" of 60.

But please take this as a wake-up call if your GFR bounces back up. I had my first wake-up call about a year before I was diagnosed and I squandered it. I didn't slow down on eating all the "fun" tasty food that I loved. And here I am. With a chronic illness. At least I'm still in 3A and have time to clean up my act.

So whatever your GFR says in the next test, it doesn't matter. If it's above 60, praise God for it but stop eating so much meat and drink more water! Give your kidneys a rest! If you clean up your act now you might be able to enjoy prime rib for the rest of your life (just not as often as you did before).

I am not unhappy with my plant-based diet, but if I had to do it all over again, I would have cleaned up my act a year before I was diagnosed, so I could eat more of my favorite foods now and then. (Cheese pizza, ice cream, etc.) I am too paranoid right now to eat cheese or have ice cream and if I ever do eat it again, it'll be rarely, like a few times a year.

My plan is to be 98-99% plant-based for the rest of my life. (It does depend on if/when my GFR gets better. I'm a little paranoid because with a GFR in the 50s I don't HAVE to be plant-based, but that's what the latest studies suggest—that mostly plant-based is very good for CKD.) I am getting a lot of benefit from my plant-based diet, but to be honest I would have preferred like a 80-90% plant-based. But it's too late for that in my case and this is it. 98-99% plant-based.

Don't be like me. Learn sooner rather than later.

69YOScared profile image
69YOScared in reply to Tuolumne

Definately have taken as a wake up call.... just getting bumped around to figure out what to eat. I am not knowlegable in food. My wife does the cooking... but I think shse knows.

Bassetmommer profile image
BassetmommerNKF Ambassador

NO promises but it could improve.

69YOScared profile image
69YOScared in reply to Bassetmommer

Does Pee color make any difference or tell you anything.... sometimes mine is a clear color and sometimes a light yellow...... I am sorry to ask such pointed questions..

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to 69YOScared

Don't be embarrassed. Pee color can indicate amount of water and other things are being excreted. Light yellow is good. Dark, not so good and no color can indicate over hydrated. But for CKD, better light than dark. Not the end of the world if clear....it really isn't. It means you are helping the kidney flush out toxins.

69YOScared profile image
69YOScared in reply to Bassetmommer

I have had dark and it sinks to the bottom in the summer when I work around the house (Florida is hot) and I realize I have to drink more water. Does it matter if I am over hydrated? I forgot to mention one other item, my BP is usually 116/77 or so, but since being told this, it has not come down much, and that is nervousness I know. 134/77 or give or take 10 in each. Thank you Bassetmommer for all these answers, I am slowly calming down since joining this group. I am still down on my xanax for the day. Nothing like yesterday when I was picking out my urn.

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to 69YOScared

Not to add to your worries, but high BP can worsen your kidney problems. Really, go relax. Try breathing though your worries and go outside and enjoy the FL weather. Go for a walk, or better go swim and just float and enjoy your life. This is the best of times... I love being retired. We have snow now, but go twice a week to our local indoor pool... which I enjoy. Enjoy Thanksgiving and be grateful you have a disease that you can work on getting better.

69YOScared profile image
69YOScared in reply to Bassetmommer

I am preying it does.....This morning anxiety, I think its the holidays, and chest pain from anxiety.

RoxanneKidney profile image
RoxanneKidney

Get a grip. Start educating yourself. We pretty much ALL have the same story. Learn to eat right. The OJ is not good for you. But the coffee is OK. Start with that. If you don't have protein in your urine, you can control this with diet. Stop eating meat and eat plants and fruits and bean. Smaller portions, more frequently. Get outside and walk or jog and get a grip on your anxiety. There are people on here who would love to be where you are. The only thing that will drive you to your grave is your exaggerated crisis. Good thing you canceled Thanksgiving because until you learn what to eat and what not to eat, it is better off that you are not overindulging..You sound like you have a Xanax addiction. That is probably a bigger problem for you than CKD.

Tuolumne profile image
Tuolumne in reply to RoxanneKidney

"The only thing that will drive you to your grave is your exaggerated crisis."

I was in the EXACT same place as he was when I first heard. Doctor Google had me convinced I had 8-10 years to live and I was in tears. And if the OP has already been diagnosed with anxiety, then that isn't helping. The thing is, the OP wants to be convinced that things will be okay. He's not resisting the optimism for the sake of being a drama llama. Cut him a little slack. He just needed to be informed and encouraged and he's responding very well with the hopeful news he's receiving.

I agree 100% with the plant-based diet.

69YOScared profile image
69YOScared in reply to Tuolumne

Thank you Tuolumne. Yes, I am learning..... 69, I guess I cannot live for ever, but, just not ready to leave my wife.... she is the most important life in my existence. She is not ready to lose me either. I would think once one passes, there is no more worry or knowledge. I know that is sad...but... you can see I am troubled... I am glad for this group whereas I cannot get a counceler as quick as I want.

69YOScared profile image
69YOScared in reply to RoxanneKidney

I guess I do not understand when everyone says eat plant food. All I can picture, to be funny, is me like a cow in a pasture eating grass... What is plant food. I cannot just have pees and plate or stringbeans and plate. I love salad, but I like my dressing too.

Jayhawker profile image
Jayhawker in reply to 69YOScared

That’s funny… I’ve had a challenge adjusting to a modified vegetarian diet. Frankly, I didn’t know what to cook or what to eat. And I was relying primarily on boneless, skinless chicken breasts before. My renal dietician helped me devise a meal plan that us working for me. I imagine your wife may be interested in attending your appointment with the dietician. And, if the nephrologist doesn’t refer you to a dietician, you should request a referral.

Jayhawker

RoxanneKidney profile image
RoxanneKidney in reply to Jayhawker

Beans and rice. When you look around the world where people live the longest...meat is a small side dish. There is not processed, packaged food on the table full of additives. And people are very active.

69YOScared profile image
69YOScared in reply to RoxanneKidney

Sounds like I will be a canidate for the show survivor...

RoxanneKidney profile image
RoxanneKidney in reply to 69YOScared

There you go: That is the attitude. Your job right now is to not make your wife miserable. Being a caregiver is a hard enough. And if she was doing everything for you before you found out about this CKD thing, then the last thing you want to do is break her down with a miserable attitude. The sun will rise, so enjoy it while you are on this side of the ground. And your wife deserves that too; she doesn't need to be swimming in your misery. Take charge and be a survivor. And choose to do it daily, hourly if you have to ....Cook some healthy recipes together...take some walks, plant a garden. Lead the way.

69YOScared profile image
69YOScared in reply to RoxanneKidney

Yes, we are both a sad state right now, we think it is the holidays.. No children, no family in the area. No invite this year from neighbors. Everyone fears covid. And my wife has just had surgery to cut out 2 big skin cancer spots.

Sophiebun11 profile image
Sophiebun11 in reply to RoxanneKidney

Countries with mostly vegan/vegetarian diets have the lowest incidence of health problems.

Sophiebun11 profile image
Sophiebun11 in reply to 69YOScared

LOL, now you're cheering up and making jokes, good for you. Don't fear, you won't have to eat like a cow or a bunny.

You can eat many delicious foods, just not red meat and limit poultry. Have your wife read this link on CKD nutrition.

You can read it and prepare meals as well:

davita.com/diet-nutrition

I've been on a vegetarian diet since I was 10 years old and have grown up feeling well and made it to the ripe age of 67 on plants, legumes, grains, nuts, seeds, and lots of water.

Make the decision to give up some foods you love so that you can maintain your health and not have to worry about your eGFR.

The fact that you are going to see a urologist says that your PCP didn't refer you for CKD, it was more than likely your prostate problem. You'd be referred to a Nephrologist for CKD but usually people aren't referred until their eGFR drops below 30 and they are Stage 4 like happened to me and most of us here.

69YOScared profile image
69YOScared in reply to Sophiebun11

Tomorrow Turkey and potato's can i have peacan pie

Okiksaints1955 profile image
Okiksaints1955

1. You are 69 and what did you do in those years (I mean, did you enjoy) - how long do you still want to live? Your answer to this will determine the extent of your lifestyle changes going forward.2. You have anxiety and have taken Xanax. How did that work? Do you think it's still working now having gotten the KD diagnosis? If not, that is the first thing you should solve. See a psychiatrist, change doctors, etc. Anxiety will aggravate your KD.

- but before changing meds, see #3.

3. Assemble a medical team that will answer your questions (and you will trust). We cannot answer how long do you have left.

There are a ton of series of lab test over time that are needed to properly assess your condition. Add to that the other conditions and your physical assessment.

Then your questions are (all dependent on your answer to #1)

- what can I do to lengthen the kidney function- lifestyle change. They will be different but not so bad once you get use to them

- when it's time to do medical intervention, what are my options. And that is probably years from now.

I am 67 and my new kidney is 35 (my daughter's). I have a one year short term plan, 3 year mid- term plan and a bucket list. I revise them every 6 months. Everyday is a blessing.

Hope this helps

69YOScared profile image
69YOScared in reply to Okiksaints1955

I have worked from age 19 to 56, then retired to FL. However we have not done much traveling as yet... We are enjoying where we live, the beach, and pool. Last year were were going to start traveling and after our first trip in February, that was it. Since then my wife had a knee replacement that we just relaxed at home, this year she fell and broke both kneecaps, so we are grounded again. We enjoy going to the islands, however their covid is too high. We are fully vaccinated 3 shot, and any thoughts to that shot upping my egfr? The xanax I have been on since being diag social anxity disorder when I was 19. Back then was on 100mg of librum a day but did no good so finally went to a Boston Dr. and they put me on xanax and we tried therapy, never worked. So I have taken that all my life, enjoying life with minimal anxiety. My first day of being told, from about my regular 2mg of xanax went to almost 5mg to keep me from a rush to the hospital. Been there many times over my life for panic attacks so now I know what to do, since the hospital just gives me a higher shot of xanax to calm down. Tuesday down to 3.25 mg, so I am accepting and learning. Thank you for telling me that it will be years before I need medical intervention, however It may take me time to slowly get away from meat, I will eat less, and definately more water. I did not drink enough water for sure. Coffee in the morning, wine at dinner, and water watching TV from 7-midnight. The day of the blood test, I had to fast overnight as well, so minimal water in the AM. At what point were you when you got your daughters kidney? I have thought in the future of a new kidney, but not children, and my brother and sister I am not sure they would donate. I hope I covered everything... and thank you for your input...

horsie63 profile image
horsie63 in reply to 69YOScared

If you want to learn about plant based take a look at Forks over Knives and the China Study. There are many books/studies that show a plant based or mostly plant based diet and the right amount of exercise can help with longevity. The Blue Zones book shows what various long lived societies the world over have done. Sometimes knowledge can help with anxiety as it's the scary "unknown" that can cause it.

RoxanneKidney profile image
RoxanneKidney

Actually that is what I first wanted to know too. When I was going to die. There are studies out there. With the amount of protien that I had, I had roughly 10 years according to one study. Thankfully the meds stopped the protein leakage...and diet, so hopefully I have 20. But don't let those numbers become self-fulling prophecy. Eat Right. Workout. Enjoy your life. And you will live long. And get your blood pressure down. You need it down around 120/80. or lower becuase that is what your kidney likes.

69YOScared profile image
69YOScared in reply to RoxanneKidney

What do you mean by Leakage, also, what are some of the medications involved with KD

Okiksaints1955 profile image
Okiksaints1955 in reply to 69YOScared

I was diagnosed with CKD at 35. Transplant at 65. Never went to dialysis because I planned everything (I am OCD). Lucky also.

I had HBP, gout, high cholesterol etc - all kidney related and now all gone after the transplant.

Am still OCD, with tinnitus, vertigo, etc. and old. Still do my 6-7K almost everyday. And enjoy life with the wife.

After my eGFR ranged 50-60 over a period of 1 year, my Nephrologist and myself agreed to transplant - 5 YEARS LATER. So, 6 years was what I had. But there are other tests results considered (creatinine, albumin, protein, etc). It will be different for you - each one case is different.

I have a very good medical team, lead by me Nephrologist.

Good luck on your journey.

69YOScared profile image
69YOScared in reply to Okiksaints1955

Proud of you to be able to mentally handle it. I need to be strong in the head now

RoxanneKidney profile image
RoxanneKidney in reply to 69YOScared

Protein not being absorbed back into the body and spilling out in your urine, is leakage. If there is a little, it will become a lot over time. That is why people go on these low protein plant based diets LPD. Medications like Lisinopril, lowers blood pressure and protects the kidneys from the leakage. This is one of the ACE inhibitors. Their counterparts are the ARB inhibitors. Having bad kidneys can lead to high blood pressure. And having high blood pressure can lead to bad kidneys. Either way, the kidneys like lower blood pressure.

69YOScared profile image
69YOScared in reply to RoxanneKidney

My BP today was 118/77. No diabeties, no high cholesterol, urine clear, or yellow. All other blood number are good. I am going to get help next week on further testing and a new diet. I would like to stick around a little longer. Thank you for the input also.... I will take all the information I can get.

RoxanneKidney profile image
RoxanneKidney in reply to 69YOScared

Ok, just remember that protein in the urine and protein in the blood are too different tests. I forgot if you had protein in your urine, but ask for a 24 hour urine test and get the total amount, if any. I crashed with around 600 total protein and all other blood work normal. Unfortunately in many cases they cannot figure out the cause, but like others have said on here, you can help yourself A LOT with a good renal diet and a good attitude. God Bless, and Happy Thanksgiving. I think you mentioned that you and your wife were by yourselves, but you do have each other. That is a lot to be thankful for right there.

69YOScared profile image
69YOScared in reply to RoxanneKidney

I think I am going to be instructed on that one by the urologist on the 6th. They mentioned a test like that

Tuolumne profile image
Tuolumne

I'm just adding to the many posts here. I discovered a year ago that I have Stage 3A (low 50s GFR). I am now on a plant-based diet. I was told by my doctor during my last visit that she thinks I can live to a ripe old age. Or rather, my kidneys will sustain me for that long. She's happy with the plant-based diet. I realize that it's probably too soon to know the future, but her optimism was very encouraging.

Diet is HUGE. Take heart. Your GFR is still pretty "good" as CKD goes. You have a LOT of hope. There's A LOT you can do.

Also, I had back pain, on the right side, when I was diagnosed. Sometimes pain on the left side too. I started on my anti-inflammatory plant-based diet and not too long after, the pain stopped. I don't know if it's because the anti-inflammatory diet helped my sore back muscles (honestly, I think that's it) or if my kidneys "recovered" enough from the diet to stop hurting. But whatever the case, I haven't had pain like that again. (Though my back muscles do twinge once in a while.)

69YOScared profile image
69YOScared in reply to Tuolumne

Most of my back pain is siatica which I am going to have addressed using RFA. When you say plant based food, that is the part I just do not understand. Does this mean I cannot take my wife out to dinner anymore... what type of meal do you order?

citruskayaker profile image
citruskayaker in reply to 69YOScared

All meats (especially red meat) have proteins difficult for the kidneys to process. By shifting towards plants and fruits it takes the load off of kidneys, and can help high blood pressure and cholesterol. Better sources of protein are beans and whole grains. White meats and poultry still have a lot of protein but are not as problematic as beef, venison or bison. Excess salt is a problem with any restaurant, so you need to specify limited or no salt whenever possible. Avoid all alcohol. Dairy should also be avoided. Unsweetened nut milks are preferable. Avoid almost all deserts and snacks. Use apples, carrots, and fruits instead. CKD is not a death sentence, especially when you address this issue. Try to get down to a BMI of 25 by losing excess weight if you are heavy. Cut sugar intake where possible. You are in good shape compared to many of us here.

69YOScared profile image
69YOScared in reply to citruskayaker

Don't like this one... everything I like to eat is out.... looks like I will be cashing in early. I cannot do that. I had a good life... and I am starting to see the light...so, the more I read about the food.. going out... I am not staying home and eating the grass, so, not sure how long it takes to go eating meat, but, if its time to go, take my xanax, and then maybe I have 5 good years.... very very depressed today as you can see.

Tuolumne profile image
Tuolumne in reply to 69YOScared

Don't be scared. It takes time to get used to. I was a vegetarian (I would eat milk, cheese, ice cream, but no animal flesh) for many years. Therefore, my transition to a "plant-based diet" was pretty easy. And yet I still miss my cheese! It takes time!

Your palate will change. I used to eat a lot of salty food—anything without a lot (too much) of salt was bland to me. Now I've gradually gotten used to less salt, and now lower-salt food tastes "the same" (just as salty) as the much saltier food I previously was able to enjoy.

I haven't eaten a burger in more than 20 years but at times I'll eat an "Impossible burger" (or other types of plant-based imitation meats) and to me, after all this time, they taste TOO "meaty" and I'm a little uncomfortable with them. I feel like there MUST be meat in there somewhere! LOL. But I'm sure to someone who can eat meat and compare with the Impossible Burger, there might be a difference. But to me, there isn't. Gradually your tastes change without you noticing.

What I'm trying to say is that you need to give yourself time because you WILL get used to less meat (you don't have to give it all up!) and you will develop a different palate and genuinely learn to appreciate and enjoy different kinds of food. If you have to lower the meat in your diet, now is probably one of the best times—there are so many tasty meat substitutes that are a lot closer to the "real thing" than in the past.

This guy does all these videos where he "veganizes" popular meat-based fast food. I'm sure the recipes are not completely kidney-friendly, but they're a step in the right direction. theeburgerdude.com/

citruskayaker profile image
citruskayaker in reply to Tuolumne

FYI: the impossible burger has tons of salt, potassium and calories... it is not healthy. Veggie burgers are a better choice, best of all if you DIY. Reading nutritional and ingredient labels matters.

Tuolumne profile image
Tuolumne in reply to citruskayaker

Of course it's not kidney friendly. But as an occasional "treat" it's a far better than regular meat. I've been able to eat a few Impossible Burgers (or the Trader Joe's equivalent), because I kept track of the salt, etc and "rationed" the rest of my sodium for that day. It's not something that I'd do frequently, but once in a while, it's an option. And for someone who is struggling with giving up any meat, it's a step in the right direction.

citruskayaker profile image
citruskayaker in reply to Tuolumne

According to a doctor, 85-90% of patients who undertake major diets fail. So if you are willing to indulge yourself when you feel like it, you undermine your own efforts and are not fully committed to the fight. Hey, it's your life and your choice. Hope it works for you and you prove me wrong. Live long and prosper!

69YOScared profile image
69YOScared in reply to citruskayaker

I am going to try.. I have lost 4 pounds since told last week. I have already called a transplant center in FL, and they said I was a little early... thats before I did any investigatioin and even knew about dialisis. I think I went over the edge when I was told and before they even get a chance to take a second blood test

69YOScared profile image
69YOScared in reply to citruskayaker

My wife said I should give that a try... I want to find a small package before buying a cotco size

Tuolumne profile image
Tuolumne in reply to 69YOScared

Good to hear! Be warned, while I think the recipes will be tasty, they may or may not taste the same as "the real thing." Go in with realistic expectations. You probably will enjoy the food, but please don't expect perfection. Or maybe the recipes will be identical to the "real thing"! I don't know, I haven't tried them yet (I keep meaning to). And also remember, as others have cautioned, that these foods have lots of salt, potassium, etc. All of us kidney patients need to keep track of our sodium intake (and possibly other things) so you'll have to keep an eye on that when you try these substitutes.

Here's a review of McDonald's "McPlant" (yet to be made available nationwide). I think the review explains a lot. It's tasty, but not exactly healthy (and not completely vegan) but it's a starting point. With some more kidney-friendly tweaks when you cook for yourself, I think you can get something pretty tasty and very much like "the real thing." Not everyday, maybe, but still, better than the alternative! ktla.com/morning-news/mcpla...

69YOScared profile image
69YOScared in reply to Tuolumne

I like that link, I have bookmarked it

Sophiebun11 profile image
Sophiebun11 in reply to 69YOScared

Now you are being negative about diet. Seriously, you are afraid of dying yet won't give up just red meat?

You mean you don't like eating ethnic food? Vegetarian food is ethnic food. Many countries eat only vegetarian cuisine. Think Japanese food, Ethiopian food, Indian food, Mexican food. Are you telling me that you don't like any of those cuisines? That you'd rather continue to eat steak and potatoes and watch your eGFR drop?

Just learn what not to add to the above cuisine like soy sauce, and high sodium/potassium, and you can eat many things. You can eat omelets, oatmeal, toast with almond butter for breakfast.

Stressing over what you can't eat rather than learning about all the wonderful new foods you can try is the wrong way to see it. Each meal can be like traveling to a new country. Everything is how you look at it. Please make this journey easy on your wife as well, it sounds like she has her own serious issues to cope with.

Bon appetite

69YOScared profile image
69YOScared in reply to Sophiebun11

I will try, but it will be a slow change,, it cannot be overnight. I do like Chinese Food. But I have to leave out the pork, right? So just regular rice not beef fried rice.?

Jayhawker profile image
Jayhawker in reply to 69YOScared

Lots of chicken options with Chinese food but the sodium is really high UNKESS you make it yourself. Davita.com has over 1000 renal friendly meals. They are all lower sodium and fat. The renal dieticians which have listed these also share modifications you can make in each to lower potassium, for instance, if your lAbs and nephrologist support the need for a lower potassium diet.

Right now you add Gould to lower potassium or phosphorous though as your labs may not support the need to do that. Your nephrologist will give you a daily potassium target IF you need to lower your daily intake. So, right now you could follow the recipes as normal and will have lower sodium and lower fat recipes. This really helped get me started on all of this cooking from scratch stuff.

Jayhawker.

69YOScared profile image
69YOScared in reply to citruskayaker

Does that mean Ice cream is out too.... OMG.... not much left

citruskayaker profile image
citruskayaker in reply to 69YOScared

Try sorbet or sherbet instead. There is nothing healthy about ice cream and I love it too. But instead, I'm eating unsweetened applesauce or popcorn with no butter. Instead I spray on a trace of avocado, olive or coconut oil and season with no salt seasonings. Just decide you enjoy living and it is worth it to make whatever sacrifices you can. That allows you to enjoy the love of your family and friends and do the things you enjoy. Ciao!

69YOScared profile image
69YOScared in reply to citruskayaker

I am ok with that..how about frozen yogert

citruskayaker profile image
citruskayaker in reply to 69YOScared

That is a dairy product high in protein, so no. Sorry.

69YOScared profile image
69YOScared in reply to citruskayaker

Shucks.... O wll, Happy Thanksgiving.... How about the non dairy creamers for coffee..shelf stable

citruskayaker profile image
citruskayaker in reply to 69YOScared

5 Healthy Coffee Creamers to Buy according to a 2021 internet article. I don't use the product so cannot personally assess them. You need to look at ingredients as well as nutrition to make your own assessment.

Califia Dairy-Free Better Half Original.

Elmhurst Unsweetened Oat Creamer.

Chobani Sweet Cream Coffee Creamer.

Nut Pods Original Unsweetened Creamer.

So Delicious Organic Coconut Milk Creamer.

Starbucks Caramel Macchiato Creamer.

CoffeeMate Funfetti Creamer.

69YOScared profile image
69YOScared in reply to citruskayaker

CoffeeMate Hazlenut says non dairy creamer.... is that still bad?

Tuolumne profile image
Tuolumne in reply to 69YOScared

There are many yummy plant-based "ice cream" desserts. Baskin Robbins has one now, with lots of chocolate. Not something you'd probably want to eat every day, but more and more, plant-based alternatives are becoming mainstream. There are a lot of alternatives available.

I make this weird "chocolate milk" that is plant-based milk, carob, and some molasses and maple syrup (and maybe some stevia) as a sweetener. The molasses gives the carob a little "bite" that makes it seem more "chocolately." It's absolutely DIVINE. Of course my palate has changed over the years, but seriously, I don't feel like I'm missing out on ANYTHING when I drink my fabulous "chocolate milk." I'm sure you'll find alternatives out there too. Just give it time.

69YOScared profile image
69YOScared in reply to Tuolumne

I can probaby switch on the icecream.. I just like a treat now and then. I have popcorn with the butter... but I can buy at Costco popcorn plain.. will be just as good... just something to naush on

Jayhawker profile image
Jayhawker in reply to 69YOScared

I eat popcorn when watching football (Go Chiefs!) or basketball (Rock Chalk Jayhawks! Go KU!!) (Although KU experienced a MAJOR upset defeat yesterday afternoon… That seemed to decrease my interest in popcorn…)

Jayhawker

69YOScared profile image
69YOScared in reply to Jayhawker

I can do popcorn with no butter... that I can do. It use to be go Pats, but I follow Brady because I feel the players make the team. So where Brady goes, so goes the winners. Even though I am from MA, originally

Jayhawker profile image
Jayhawker in reply to 69YOScared

Ice cream—don’t get me started. This and cheese are the things I miss most. For an ice cream substitute I now have a high protein fruit smoothie. Fortunately I really like fruit smoothies too. And, this gives me another source of plant based protein.

For cheese, there are vegan substitutes but I haven’t found any I really like. However, I have found that using nutritional yeast seems to eliminate the cheese craving for me.

And, I cook some recipes with very small amounts of lower sodium cheeses for both flavor and texture. I just limit these to 1-2 meals a week. (I decrease the cheese in these recipes by at least 50% if not 60%.) Of course, I recalculate the nutritional information for a serving of the recipe after I’ve modified it.

I use a free app called HealthWatch360. I can enter my own recipes into the app and it gives me the nutritional information for a single serving of these hand-entered recipes. Another thing I like about HealthWatch360 is that I can scan item bar codes while in the grocery store. The app then tells me the full nutritional information for the item. That helps me choose which grand of almond milk is best for me with my lab results etc. The app also gives full nutritional information for many entrees from various chain food places, e.g., Golden Corral, which allows me to see full nutritional information for various menu items when I eat out. Lots of time the item labels or restaurant information about an entree do NOT contain phosphorous or potassium amounts. So, this app gives me this information. It’s connected directly to the USA database for those who live in the United States.

HealthWatch360 is available for both android snd Apple devices.

Jayhawker

69YOScared profile image
69YOScared in reply to Jayhawker

Thank you for the Application. From what everyone is saying here... and what I am going to have to cut out... I can only see two options.....I will end up losing 50 pound from my 168, or end up dying. I am going to have to get a new kidney to enjoy life again. Just very depressed since getting the news and I know its coming out in my writings. Life as I loved it, is going to change.

Benos123 profile image
Benos123

Just like you I was diagnosed with CKD and an EFGR of 60 in August and when I asked the Nephrologist "how long do I have", she replied that if I looked after the ones I have, stop taking the NSAIDs like (Vimova & Ibobrufen etc etc) and which I'd been regularly prescribed for the last 20-30 years, that they'd see me out.

So I've given up the NSAIDs, I'm putting up with the extra pain/discomfort and getting on with life until the my next review & blood tests in2022!

69YOScared profile image
69YOScared in reply to Benos123

I did take celebrex for over a year, a couple years back for siatica.. however since, I have not taken any NSAIDS in over a year. A tylenol now and then.

Benos123 profile image
Benos123 in reply to 69YOScared

Obviously patients differ and where as in my case it was NSAIDS over a long period, your Nephrologist will identify what has caused your problem and from there you can establish exactly what you need to be doing going forward.

You will for certain get loads of advice about this , that and the other, but if you haven't already or do not intend seeing a Nephrologist, then you might as well be sticking your finger in the air and whistling dixie!

69YOScared profile image
69YOScared in reply to Benos123

I am not whisteling anything... not in the mood..... I will get on the stick to find the best specialist I can.

Benos123 profile image
Benos123 in reply to 69YOScared

Well said and Good Luck!!

69YOScared profile image
69YOScared

I do volenteer, and I love it... I am a Guardian Ad-Litem for 11 children for a county in Florida. I love going to court and representing the children. And if the parents do not get their stuff together and keep on the drugs or abusive, I love getting them into a family with love.

Jayhawker profile image
Jayhawker in reply to 69YOScared

What a great way to give back!

69YOScared profile image
69YOScared

Thank you, will try

LaraBet profile image
LaraBet

Your email sounds much like my inner voice. And I'm grateful for it. I scanned through these answers and realized that I'm (GFR-49 4 days ago) not sentenced to die. I've read about everything from Chinese Herbal Medicine to visiting these sites and scanning info:

American Association of Kidney Patients 800-749-2257 aakp.org

American Kidney Fund 866-300-2900 akfinc.org

National Kidney Foundation 800-622-9010 kidney.org

National Institute of Diabetes and Digestive and Kidney Diseases, National Kidney Disease Education Program 800-860-8747 nkdep.nih.gov

I'm sending these to you just in case.

The welcoming news is we can increase GFR through diet and BP management. Also, herbs such as red sage, astragalus and rhubarb help, as proved through Medscape studies. Yet, the message is confusing elsewhere in the media. I'd talk to your doctor about this, and I think Chinese medicine can be remarkable as an accompaniment.

I hope that this helps you; I'm scared to death. Remember that the famous commanders state that only cowards don't acknowledge fear and faith in the battle.

In fear of the Lord, Laura

69YOScared profile image
69YOScared in reply to LaraBet

Thank you for the other sites I can get information from. I really think its the holidays and getting this news that has put me in the dumps. Thank you again.

Darlenia profile image
Darlenia

I understand your anxiety. I wanted to die in place of my hubby after he received his CKD diagnosis, I thought the end of the world was here. I couldn't eat, sleep, or think straight. Eventually I realized that, even if the worst happened, there are treatments to keep a person functioning even with complete kidney failure - namely, dialysis and transplant. Unlike the brain, the stomach, the heart - one can actually live without any kidney function at all. Indeed, there are some are on this site who have done so for many years - you may well hear from them. So a death sentence is not, repeat not, around the corner at all. Since you don't have diabetes, that also works mightily in your favor. So, drink lots of water, eat a good diet, and live a fulfilling life. You have many wonderful years ahead of you.

69YOScared profile image
69YOScared in reply to Darlenia

Its the diet part thats going to be hard..... I have already started the loads of water that I did not drink at all during the day.. My wife is working with me, trying to keep me from losing it.

Maddisson profile image
Maddisson

Hi there,From Mayo Clinic:

“Serum creatinine level

Creatinine usually enters your bloodstream and is filtered from the bloodstream at a generally constant rate. The amount of creatinine in your blood should be relatively stable. An increased level of creatinine may be a sign of poor kidney function.

Serum creatinine is reported as milligrams of creatinine to a deciliter of blood (mg/dL) or micromoles of creatinine to a liter of blood (micromoles/L). The typical range for serum creatinine is:

For adult men, 0.74 to 1.35 mg/dL (65.4 to 119.3 micromoles/L)

For adult women, 0.59 to 1.04 mg/dL (52.2 to 91.9 micromoles/L)”

To answer your question, YES being hydrated WILL lower your eGfR. I usually drink during the night & drink another 1-2 cups on the hour long drive up there.

I was told to drink 1 oz of water for every kg of weight.

I weigh ~ 160 or 72kg

72 oz divided by 8 oz per cup is 9 cups a day.

I was also told to add a cup of water for each cup of coffee I drank.

Hope this helps!

By the way, congratulations on normal weight, low blood pressure, no diabetes, and having a loving marriage!

Also I just read an article on the medical community re-assessing the below 60 eGfR for folks over 65. Very unlikely that your kidneys will be your cause of death.

I will look to find the link to the article.

Best to you & your wife!

69YOScared profile image
69YOScared in reply to Maddisson

Thank you so much for your reply.... I am not sure what Mayo your at, but I do go for the Siatica and other reasons to the one in Jacksonville, FL. It is a long ride for me... we do bring water, but we do not drink enough on the ride up. Maybe one or 2 of those little bottles. I am hoping its a bad test.... but, I have to accept something will get me. You say that at my age this should not kill me, but is that even if I do not change my eating habits. For example, when my wife and I have a filet, we split it and have baked potato with it and greens. Or for spagetti and meatballs, only one meatball each. Very rarely, maybe 3 times a year we buy Roast Beef cut at Publix for a quick sandwich. For some reason, I have stuck in my head, I would like to at least make 85, Thats when I lost my father and I have way past my mother at 52. She got a bad needle back in the 70's and caught hepatitus and went down hill. So I have seen too much death.. Family and in the world... its so sad. I am not sure if you can message me a nuphrologist in Mayo, I would take the trip. We were thinking of going to Boston to Mass General or Brigham and Womens, I use to live in MA. I am going to beat this thing so I can live that life you said i can above. I am going to have good numbers. I do suffer from anxiety as you have read. But I have not mentioned other meds I take for siatica, depression from anxiety, and sleep.

I take the xanax, 5mg lexapro, 500mg of gabapention, and sonata to go to sleep. O yes and 15mg of amitriptiline, and flomax, and take .03 on the needle of testosterone every week... very little... but, my last test, my testosterone was the hightest its been in years 783, its usually in the 5-600 range... so i am thinking the PSA was thrown because of that and this week I am cutting the testosterone to .02 until I see the urologist. I do not need it for lebedo. That is not as important at this stage of life.. just holding my wife is good enough for me. Its not like i am in my early years :>) Thank you again from the Mayo, and I have to have some water now. have a great holiday

Sophiebun11 profile image
Sophiebun11 in reply to 69YOScared

Read all the diet and nutrition stuff and the DaVita site I posted. Baked potatoes are full of potassium which is bad for kidneys. Tomato sauce, unless it's low sodium and not with added meat can be bad as well. It depends on the size of one meatball. Some are the size of baseballs, others like a walnut.

You need to learn what you can about food, then revamp instead of making excuses to continue eating what you've been eating.

Sliced lunch meats like roast beef and ham are loaded with sodium and potassium and other additives. You are worrying about dying from your CKD, but you should be more worried about what you are putting into your mouth : )

69YOScared profile image
69YOScared in reply to Sophiebun11

Will review. I have so much to read... and it is good stuff...

Maddisson profile image
Maddisson

I put a red dot where you fall on the graph below. You would NOT be considered to have CKD.

I couldn’t find the news article, but I did find this research paper.

Basically, there is kidney disease & there is age-related decline. The new definition for CKD that they are proposing cited that folks over 65 with no other disease symptoms & eGrR between 60 & 45 are going through a lot of STRESS & treatment when their Mortality is not increased.

Note:,This is NOT true for people younger than 65!

CKD: A Call for an Age-Adapted Definition

jasn.asnjournals.org/conten...

2019

“A Limited Set of Age-Specific Thresholds

One can consider the CKD staging based on three pivotal age categories (Figure 3): <40 years, 40–65 years, and >65 years. We suggest GFR cut-offs of 75 ml/min per 1.73 m2 for the youngest group, 60 ml/min per 1.73 m2 for individuals aged 40–65 years, and 45 ml/min per 1.73 m2 for those older than 65 years. In other words, in individuals older than 65 years, the current CKD category G3a/A1 (GFR 45–60 ml/min per 1.73 m2) would not be considered to have CKD. Moreover, younger adults with a GFR <75 ml/min per 1.73 m2 would be considered to have CKD, as their kidney function is below what would be expected for their age.31,34,97,120,123,128,129 The choice of the different GFR thresholds can be justified by associations of these thresholds with prognosis (Figure 1).”

Graph
69YOScared profile image
69YOScared in reply to Maddisson

This is very interesting.... I have to read it a few times.... so if i do not have high BP, or Diabeties, or any other problems except anxiety..... my egfr of 50 at 69 years old is just aged egfr and is normal for me? I do have an enlarged prostate and low testosterone. I have to read this again..

Maddisson profile image
Maddisson in reply to 69YOScared

I had to read it a few times, too!I’m guessing if you ask for a retest after drinking 9 cups of water every 24 hours, all will be fine.

The data says at your age if your eGfR is 45 to 60, you have “age-related” decline not Chronic Kidney Disease.

This is new thinking. They are trying to change guides so eGfR should be over 75 for adults under 45, over 60 for adults 45-65, and eGfr over 45 for adults over 65.

As for what you are eating. Yes, half a filet is fine. Yes, one meatball is fine.

Folks get in trouble when they eat a 16 oz prime rib. Keep splitting portions with your wife!

So one question: what are your cholesterol & triglyceride numbers. The reason I only rarely eat 2 oz of very lean beef is my cholesterol numbers can rise, which increases risk of a “Cardiac Event” & since that is most folks greatest risk of death, I decided to limit my daily saturated fat.

I also walk 10,000 steps a day per my transplant surgeon’s STRONG advice.. 65 year old woman. 4 year post-kidney transplant. EGfR between 60 & 69.

Per my transplant team, I do limit my protein to 1-1.2 grams per kg of body weight. I drink water all the time. I eat 1,500-1,800 mg sodium per day on avg. I don’t eat processed foods due to Crohn’s Disease. I consider my walking & these other limits to be “Doctor’s Orders!” I also lost 70 lbs & have kept them off 3-1/4 years. Normal BMI.

Enjoy your life! Give your wife a hug!

I don’t go to Mayo but find them a great source of info on the Internet!

69YOScared profile image
69YOScared in reply to Maddisson

Thank you, I like your report better than one other that had me basically eating the grass in my back yard. I do pee regulary, do not eat 16 oz of meat, maybe 6 oz at the resteraunt. Once a year my wife and I split a t-bone that takes us two days to eat. I like the age related formuler better. But I do have some slight back pain, but it could be the Siatica. That is being addressed next week. I wonder if thats why my PCP was not so excited about it and said, go drink some water and come in hydrated and we will retest in two weeks. As far as teh PSA at 3.1 its probably due to the high testosterone. If it is early prostate C, well we will have that ripped out. I want to live and enjoy life... not eat grass.

HisLittleOne profile image
HisLittleOne in reply to Maddisson

This is very good and much needed information that will relieve many people of kidney disease anxiety! 🥺

HisLittleOne profile image
HisLittleOne

Here is an excellent professional resource with tons of information that has been extremely helpful to me since I was discovered to have stage 3 CKD three years ago at age 69. I was TERRIFIED at first…I saw two kidney specialists, had many tests and practically starved myself for fear of making my kidney function worse. Then I found this very helpful YouTube channel of someone who was stage 5 and ready for dialysis when he learned how to regain significant kidney function by his diet and lifestyle. And the doctor speaking in his video is a retired nephrologist with an immense amount of information on kidney disease. In fact, I have learned from him that at my age (72) I probably do NOT have kidney disease but that the decline is just age-related and he teaches how to keep my kidneys healthy. I am so thankful to have found this very encouraging and informative channel from solid reliable sources. (One of the important facts the doctor talks about is how the presence of protein in the urine is much more important as it relates to kidney function than the eGFR number.)

Please check it out (and I would recommend that you watch all the videos there from Dr. Rosansky)

CALM DOWN…that’s the first and most important piece of advice. Stress is a killer! You can live well with decreased kidney function if you just maintain some healthy eating and lifestyle habits. Have faith in the LORD our creator…and watch the videos. :)

youtu.be/8_Bn74YqPsI

RoxanneKidney profile image
RoxanneKidney

youtube.com/watch?v=8_Bn74Y...

RoxanneKidney profile image
RoxanneKidney in reply to RoxanneKidney

This video really helped me get over some fear. But do keep some of that fear to motivate yourself to eat more kidney friendly foods. Fear isn't all that bad. It will help you make healthier choices.

69YOScared profile image
69YOScared in reply to RoxanneKidney

I am drinking water like crazy and he popo's it

RoxanneKidney profile image
RoxanneKidney

While you don't want to be dehydrated, drinking water is not a cure. Too much water is like too much of anything else, no good. Like the Greeks say: Everything in moderation. Just drink water instead of alcholol and soda and energy drinks and all that other crap. Reach for water. Some people retain water and cannot drink much. So again, the Dr. is right; stay hydrated, but don't drowned your cells in it. Not a cure.

69YOScared profile image
69YOScared in reply to RoxanneKidney

Thank you.... I was under drinking water.. as mentioned in others, I just did coffee in the morning and a glass of orange juice. Then wine at 4, and water with dinner at 7 and a couple of glasses of water until bedtime. I just keep water with me all day now... not to excess, but boy am i Peeing much more.

RoxanneKidney profile image
RoxanneKidney in reply to 69YOScared

In those "green zones" where people live over 100 yrs. ..the one in Greece, people drink wine all day there, but it is wine they make: cloudy with no additives. The wines we drink have up to 100 additives. I just found that interesting.

whats profile image
whats

Boy, I feel better after reading all these replies. Hope you do too. My experience sure confirms the hydration and eGFR comments- my eGFR was 23 when I was dehydrated (I panicked- that was the first I heard about CKD) and 55 recently when I was over-hydrated. Actual value is probably in the forties. Just to throw a little cold water on the subject, scientists say that if your kidneys are damaged (mine are shrunken) they are one organ that doesn't recover, though obviously the lab tests we all take vary. So now that you know how scary kidney disease can be, do be more aware of your diet (excess red meat and salt in particular-never healthy) and take care of your kidneys.

69YOScared profile image
69YOScared in reply to whats

Yes, it is scary. I am going to await my second blood test next week. Then I will put together a medical team with the help, I hope of my PCP

Darlenia profile image
Darlenia

Basically yes, it's very likely age related, with your lack of water consumption a contributing factor. In developed nations, particularly the very entrepreneurial U.S., there's been a big emphasis on keeping people "young" and labeling age related decline as CKD. Humans, in the best of circumstances, aren't made to last beyond a 100 years. Your egfr is essentially a type of percentage, dwindling down as one puts on years. As you can can see, yours isn't at all unusual at this point. Simply live life - being mindful of diet, hydration, etc. This is an excellent article regarding the labelling/mislabeling controversy re seniors. I've been following this for a some time. May you have a wonderful Thanksgiving! nytimes.com/2015/09/15/heal...

Jayhawker profile image
Jayhawker in reply to Darlenia

Great article! Thanks for sharing…

Jayhawker

69YOScared profile image
69YOScared in reply to Jayhawker

Won't let me read unless I subscribeWhat did it say basically

Darlenia profile image
Darlenia in reply to 69YOScared

Hmm....the NYTimes presents the situation nicely in layman's terms but the NYTimes apparently limits the number of articles the public can see. There are numerous other articles and research papers discussing the misclassification of seniors as having CKD because the classification doesn't take into account aging. Here's another one: https//jasn.asnjournals.org/content/19/5/844

69YOScared profile image
69YOScared in reply to 69YOScared

Figures, my luck..! Happy Thanksgiving

Sophiebun11 profile image
Sophiebun11

Hi,

No need to be scared about that eGFR. Many here have eGFR 1/2 that and aren't saying goodbye to anyone unless we're heading out the door to run errands and will be back in an hour.

Please work on managing your anxiety. It is a much bigger problem than your CKD numbers.

I have a friend on this forum that is 82y/o and has a lower CKD than yours and isn't worrying about it and plans on living much longer.

Unless you get some other health issues like cardiac problems you will most likely live a normal life span.

My eGFR went down to 28 a few months back, I have cancer, a very serious autoimmune disease and I'm not saying goodbye to anyone. I was told 10 years ago that I had at the most 36 months to live due to my blood cancer. I still never said "goodbye" to anyone. Yet, here I am today telling you not to say goodbye to anyone. Attitude is over half the battle, no matter what the battle is.

In fact, having a positive attitude is most likely what has kept me going. That and my precious kitty. You have a wife, you are not alone. Don't even think about this dramatic goodbye stuff. It isn't anywhere near time for that. You could have another 30+ years in you.

Even if your eGFR dropped another 40 pts. you could still have dialysis or a kidney transplant. There is no need to be pessimistic about CKD.

If your Nephrologist or primary care Dr. told you to start saying "goodbye" then fire them, they are idiots. But I doubt anyone told you that. I think you are just scared and overwhelmed.

The more you educate yourself about CKD the more you will realize that there is a lot you can do like a plant based diet, positive attitude, exercise, and stress management to help keep your eGFR where it is or even improve it.

Read the chapters on this website. I bet you'll feel much better after you learn all you can about CKD.

kidneyschool.org/mods/

Best wishes, and please enjoy the many decades you have left.

69YOScared profile image
69YOScared in reply to Sophiebun11

Actually, the blood work had just my PSA up to 3.1 and they were not even addressing teh egfr. I saw it and saw it was below the line and above the creation line so I knew what it did to my cats, so i figured, being uneducated, I was going to follow the same route... I love your above reply.

Sophiebun11 profile image
Sophiebun11 in reply to 69YOScared

Luckily you're not a kitty LOL

I've had kitties diagnosed with kidney failure. My vet had me give the SubQ fluids and feed them a special reduced phosphorous diet and they lived another 5 years. That is 35 kitty years in human years. So you have a long way to go.

My granny lived with kidney disease, she died when she was 96 y/o of cancer.

🐱🐈🐱🐈🐱🐈

69YOScared profile image
69YOScared in reply to Sophiebun11

After a while ours dreaded teh subQ and we were tourching the pool little familyl member. So we went to K/D and more water in more areas one lived two lived to 12 and one to 17. I am starting to think the solid food for cats cause their problem free feeding

Sophiebun11 profile image
Sophiebun11 in reply to 69YOScared

Oh yes, dry food is terrible for cats. My friend is a vet and he told me never feed dry food except as a treat and only a Tbl. at a time in a little toy. Only wet food regardless of the age since it's got water and cats don't drink enough. Every cat I've had has lived to be 20 y/o. I swear by wet food. Plus dry kibble is full of carbs and can make them chubby ; )

See how diet affects animals kidneys the same as it affects human's bodies. Eating a mostly plant based diet will help kidneys, cholesterol, triglycerides and everything else : ).

Grammy80 profile image
Grammy80

EXHALE~! You have gotten some tremendous input from the forum....now please, try not to panic and take in this knowledge from people who have been through this and then some.

I am an 81-year-old gal with GCA/Temporal Arteritis and a laundry list of comorbidities. I lost sight in my left eye in 2019 as a result. My GFR was always in the 60s, not bad for my age, and BOOM in 2019 it dropped to 38. It has, with no treatment, gone back up into the 50s and presently sits at 40.

Please KNOW that your life is not over, far from it. Take it step by step, day by day....I do not say that lightly but panic and anxiety aren't good for any facet of your life. Not easy I know, but myself and many others really work at this....and have to....every day.

You are alive....don't cancel living. This is written with compassion and a little tough love.

Do take care 💖

69YOScared profile image
69YOScared in reply to Grammy80

Thank you.... yes, when I was told and not knowing, I was ready to pack my clothing for goodwill. I think I will hold off on that.

Grammy80 profile image
Grammy80 in reply to 69YOScared

I'm glad you are unpacking....you've got a lot of time and you will feel better putting that energy into positive things. You can see....you are not in the rowboat alone and have a lot of support. So far, you are on the right side of the daisies and will be for a LONG time.💖

69YOScared profile image
69YOScared in reply to Grammy80

Thank you for your reply. Yes today I do feel better... I think it was the holiday not being with any family that also hurt. It was like just life is slipping away and having no family around hurt too.

Grammy80 profile image
Grammy80 in reply to 69YOScared

Yes, it does hurt! I moved to Indiana from Maine in September 2020. Thanks to Zoom I still maintain healthy and positive relationships with those friends since I get out only for appointments. It is a fact that these joyous holidays can be a stressor, big time. The thing that works the best for me is to try to find something to do for someone else. I'm 81 and believe me....the slipping speed picks up. I'm so happy you are doing better....it sounds like you are over the ton of bricks that fell on you and you are moving forward. (It is a 24/7 job, it is for me) 💖 When you are on here....you are never alone. None of us have to look far to find someone who has it tougher...you are doing great!!

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