Ignored CKD diet and then had best test ... - Early CKD Support

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Ignored CKD diet and then had best test results so far

I am not making recommendations that what I did should be done by you. Each must follow their own doctors advice. I am just relating my experience.

In mid 2017 I had kidney removed. I immediately became classified stage 3b, with creatinine levels of 1.8 or 1.9. I followed all the advice. Diet. Drank 100oz of water daily. Briskly walked daily for 30 minutes or more. etc., etc. Over time I got occasional lower creatinine level of 1.7, if I was very hydrated before the test. In April I was diagnosed that the kidney cancer returned to my bones. I'm stage 4. No treatments available. Because of this I decided to forego all the normal efforts I was following for helping the remaining kidney. I had to have spinal surgery to repair cancer damage. Before the surgery tests showed my Creatinine had dropped to about 1.5. Big improvement. So for 4 to 6 weeks there has been no exercise. I only drink about 40 to 50 oz of water a day. I don't follow the CKD diet. I have not gone overboard and eat only bad things (beef, etc.,etc.). But I am eating a more normal diet without restrictions. I just had my blood and urine tests completed. When I went for the test I was not hydrated. It was an early morning appointment. MY CREATININE DROPPED DRAMATICALLY to 1.22!! MY BUN WAS 20!. Everything tested normal in urine except Potassium was 5.3 (the limit should be 1.2). Now either all my efforts from mid 2017 started to pay off, OR it makes me wonder about just following a "normal" diet for some reason is paying big dividends. I'm anxious to hear my kidney doctors opinion at the next appointment.

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Hi Rick,

I guess with all that is going on for you, it is amazing. Question for you...Did any of your medications change?

The other thing to remember is diet is cumulative. If you keep eating "normal" as you say and not following a kidney diet, I wonder what it will be down the road. When I first started on my CKD diet, I did not see much improvement for over 6 months. Now, a year later, I have stabilized my labs.

But I got to say, wouldn't life be sweet if we could all eat what ever we wanted. Good luck with everything and let us know how you labs turn out down the road.

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Yes you bring up excellent points. That Is what I wonder also. If it took all this time for the diet/process to pay dividends. IF the cancer had not returned I would stay on the diet. But at this point the cancer will "take me" long before even a bad diet (normal) would hurt me. And as I say I have not gone crazy. On the diet you do become accustomed to those foods. But I am not treating myself to larger portions (protein). To treats more often such as ice cream, sweets (again not all the time). Beef a bit more often, but not a lot. Medication changes have been reductions. My amlodipine went from 5mg 2 times a day original to 2.5mg once per day. My lisinopril went from 20mg twice a day to 10 mg once a day. I eliminated baby aspirin a day, fish oil, and daily vitamin (was told to stop taking them in preparation for the spinal surgery. Have not gone back on them as they must be eliminated before the hip replacement on the 4th. Another contributing factor may be weight loss. Clearly this has lowered my bp and thus the medication reductions. But it seems to have affected the creatinine, etc. When I had kidney removed I was about 202 fully dressed. Now I am 157. The diet and exercise helped. Also the cancer and surgery also contributed to about 12 of that weight loss. I will keep you posted. My unfortunate health allows me to be a good experiment to show what works (ckd, diet, etc., vs weight loss vs coincidence vs normal diet). And that is the goal of this site, to share with others what has or has not worked.

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Hi Rick,

Just to let you know that you are in my warmest thoughts.

Your tenacity and courage during this fight is inspiring. Cancer is not an easy thing to face. I know as I saw my mom through 2 years of a strong fight.

It amazes me what reactions our bodies will have to various diseades and the medications which are prescribed for them as well as reactions to specific foods. Despite the cancer, the weight loss has compensated and allowed you to forage a medication change and dose; forget the improved kidney function.

It is a tough choice as I know that cancer patients are recommended to consume a high calorie diet; cheating on the CKD in moderation helps the soul.

Have you checked in with the Oncology Dietician and spoken to her/ him regarding which foods would be beneficial to your overall well being?

I know that they are attentive to keeping your weight as high as possible and eat eat healthy foods with a kick like butter to them.

During her battle, Mom never gave up; to her it was about living and enjoying family and what you are able. She knew the score, especially toward the end of her life, yet she believed that you don't take the attitude that "it's over"- only God knows when the circle is complete. I know as I took care of her.

I know that this can't be easy!

You are a fighter!

Please feel free to reach out at any time and let me know how you are doing.

Please consider speaking to the Oncology Dietician as she gave us great suggestions, recipes and even free samples.

Stay Strong and remember, it is about the living!

Fondly,

Bet

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Thank you so much for the lovely, lovely note. My next oncology appointment is next Friday. At that time they have included time to meet a dietician, a social worker (to develop a plan when I can no longer care for myself, where to go, what to do, as I have no one to be a caregiver). I agree with your mother's approach. I know it is hard to understand, but I really don't think too often of my coming passing. I just live the day as usual as possible. There have been surgeries (spinal done, hip replacement coming up), radiation for 2 weeks (not a terrible experience but not pleasant), and lots of laziness and fatigue (where I'm content to just sit and watch TV or movies or enjoy the sun). These things have been time consuming. And not great to experience. BUT in a way they have kept me so busy, my mind so busy, that I just don't think too often of what will be, or when it will be (months, a year, 2 years?). And when I do think of it, I try to remember the lovely posts and letters from people on this website, and it warms my heart.

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Hi Rick,

Just to let you know that I am thinking of you and hoping that your oncology appointment went well today.

I am glad that your oncologist is adding in a dietician, social worker and other personnel to your team to help make your life healthier and easier. Hopefully the social worker will match you with a person who is not only competent but also becomes a warm companion with whom you can talk and enjoy the time that you will spend together.

Remember, the doctors can look at your case from the clinical standpoint as far as the progression of the disease, but only God knows. Every day is

another day of "living" and even if it is one call, one note, one post or PM from one of us, let it make that day special.

I am glad that you are filling your time productively with movies, television and other things to enhance life.

Have you considered writing about some of your experiences?

If your courage, strength and tenacity can help another than all that you go through becomes lesser in pain.

I know that radiation is not easy as my mom went through it; but braving it out and rocking with whatever comes via a treatment is the key. It will end and hopefully with positive results.

It's okay to feel lazy and relax around the house. Hopefully the medical team will assign someone to you even to do light cleaning right now and they can take you for a ride, and get you out of the house.

. I am very positive about your hip replacement. If the doctors weren't confident that you could handle it, they wouldn't do it.

Please stay strong and continue to fight hard. Know that I am interested and happy to support at any time. Reach out here or through a PM at any time.

In my prayers.

Bet

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Words I can not find to tell you how much your note meant to me. And its recommendations also. My appointment it next Friday, not yesterday. One of the things the radiation department told me about was a discussion group. Once a month those that are interested (patients like me) meet, share stories and experiences. It is chaired by the nurses in the radiation department. As soon as my "hip" allows me to be mobile, I want to join this group. As for getting "out and about", I still drive. BUT I limit it to short trips during the day. There is a grocery store about a mile from here. A plaza with some stores to just browse. I limit it to week days when there is no traffic, and drive like the stereotypical "old man" about 2 miles and hour (to be safe). Now that it is summer like, myself and my neighbors are all outside more. Doing chores, sitting in the sun, walking around. So there is a lot of socialization that way. I do, as you say, enjoy my days. Oh yes, it constantly weighs on my mind and makes you want to shout "can't I have just one hour without worry", but it is not to be. Thanks again.

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Rick,

Glad that my words are helpful; I wish that I could be of more support to you.

Glad that you are getting out a bit; it is not the distance but changing the scenery. Keep all of the good things that you can do in the frontline.

Things here are blooming as well. The weather is getting warmer and we also see more of our neighbors out in their yards planting, etc. It seems

like all of the birds have come north- hibernation is over! Great place to put your energy as lawn chairs and a glass of iced tea or water adds to the ambiance and motivates conversation!

Bear in mind, like the words

kidney issue, etc. everything

is still raw and stinging right now- between one set of news with open ends and an up coming surgery.

Your feelings are absolutely normal; allow yourself to feel them , but also try to bear in mind what you can control, what you need and don't hesitate to reach out if you don't feel all that great.

If one day is not so perfect, hopefully the next will.

It's not easy, I know.

The discussion group sounds great! Your Medical Center sounds wonderful and progressive - the people incredible and caring.

Your surgery IS going to go very well and rehab will get you to the group and other great places faster than you think! Keep that thought.

Please let me know how your appointment goes. Be positive and know that you have a friend from a distance at your side.

Again, please feel free to reach out at any time ..I will always reach back. You have friends here who are all in your corner! All of us!

Sending you smiles and good thoughts..

Bet

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Hi Rick, I fully understand you coming off your diet and enjoying foods you otherwise wouldn't be able to have, Please try to keep it in moderation and look after yourself! Keep me posted on how things are going Rick. Kind regards Janet.

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Thanks so much Janet. I do try for moderation while at the same time "enjoyment" of "forbidden" foods. It's a difficult balance. Do I keep the kidney as healthy as possible even though in the end it will make no difference? Or do I just forget the kidney because of the inevitable (cancer)? But yet do I want to complicate the inevitable and have kidney problems at the same time.? So I go for enjoyment with moderation and leave both conditions up to what fates will allow.

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God bless you, Rick. Your fighting spirit is an inspiration for all of us and I pray that you are able to live a full, joy-filled life for whatever remains. You don't mention your age, but I hope you have lived a long life already.

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Thanks Susie. I appreciate your good will. I am 69. Will be 70 in November. I always anticipated a longer than "average" live span. My mother's mother lived until the age of 91. My own mother was 86. My father was 92. But this is not to be. However I look at it differently. I was caregiver for my mother who suffered breast cancer and Alzheimers, for 6 years. So she attained a long age (86), but really not a good few years. Then I had to care for my father for some years after my mother passed. He was not ill (other than usual things) but it again showed me that just obtaining a long age (92) is not what matters. His last years, even with me caring for him, were long lonely days. His mobility (due to age) was not great. So each day was much the same, over and over. There are obviously exceptions where people live to the late 80's early 90's and are spry, sharp, active. But they are exceptions. I noticed friends of my parents, and their siblings, MOST (not all) life started to deteriorate after 80 (slowly), and at 85+ (just passing time each day). So I will not be reaching that plateau. But for now I try to make each day active, enjoyable, sensible, helpful to others, and what will be, will be.

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You are an amazing person!

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I was blessed that my 92 year old mother stayed healthy and strong until the last couple of months when she became very frail. She had walked every day for 45 minutes in recent years and an hour or more always before that. I too am 69, turning 70 in July and have always been healthy, so it was a shock to find out I have CKD. I am on a renal diet plus nutrients and herbs that are supposed to help. I walk most days, but I don't manage every single day. I am trusting in the Lord for my well-being and hope that I can live a long and useful life with quality of life being paramount.

Take care and God bless you on this journey of yours. I hope it continues to be active, enjoyable, sensible and helpful to others. Do keep us posted as you go forward.

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Hi. I am sure you will be fine with your "CKD". Stay walking, stay with diet, all will likely be fine. I remember what one doctor told me early in my "ckd". I was shocked as you. She said that she could stop 100 people randomly on the street. Take their blood. And the majority would be called "CKD". But they don't know it. That there is far too much emphasis and credibility given to this classification system than it deserves. She did not believe in it. She was a kidney doctor. She does not even look at my egfr. She looks at my creatinine and bun/creatinine ratio. If they show consistency (or hopefully improvement) over time, there should be no worries.

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Thanks for the encouragement, Rick. My creatinine is high and too much protein. I have been on a low carb diet for many years and apparently that was all wrong for my system, I need more carbs and less protein! Maybe now I will lose the weight I have gained. My doctor asked if I had any pain and was amazed when I said no. I have no "symptoms" as such, just what the labs showed. Thanks again.

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When I was labelled CKD I too was too high in protein. I eliminated beef from my diet. I had pork only about 2 times a week (lean cuts) and the rest was chicken or turkey. I had Italian dishes weekly. I watched my protein. But not to the extreme. I just limited my intake to what they put on the packages as your daily recommended intake. I then also start to be sure to consume at least 64 ounces of fluid per day. I walked for 30 minutes, briskly, almost daily. Well the weight just started to fall off. Initially I rapidly lost almost 30 pounds. I too never experienced any pain from my kidney or due to CKD. Like you it was all based upon just lab work.

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Whatever the reason that’s awesome! So glad for you😀

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Thanks for sharing what you are experiencing. You are in my thoughts and prayers.

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I just turned 70. I'm a Registered nurse and still working. I feel great physically, mind and spirit praise the Lord. My current Gfr is 54. I don't follow any diet. I drink coffee, occasional alcohol and don't exercise. Thanks for the inputs. I guess I need to do drastic changes in my lifestyle. It's good to know there are ways to improve Gfrs. I read somewhere it is irreversible and I was disappointed.

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Hi. What you can do is perhaps try some minor lifestyle changes. See if you get any improvements. As my doctors always told me, you do not have to be always restricted on your "diet". In other words if something is forbidden (lets use alcohol as an example) it does not mean that an occasional consumption is going to do you harm. They say avoid beef. But that does not mean that once a week you can't have a small amount, or a burger, etc. They told me there are some basics that should be avoided all the time. Soda for example. Too much salt. I would suggest to you, you like your coffee. HAve it, but no more than 3 a day. For exercise, even a 10 minute daily walk would be good. You will soon find you enjoy it and are walking 30 minutes. The overall advice is do not go beyond the daily recommended requirements for anything. Every food package shows you for example how much salt or sugar is contained. And what the daily limit is. Keep track of your consumption and stick to the recommended values. The one simple thing that I found to be the most beneficial? Drinking at least 64ounces of water per day. You will lose weight. Your egfr will increase.

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I just think you’re awesome! And if that’s working for you I say go for it! Continued prayers 😀

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