Thankyou: I'm not sure how this works. All... - Early CKD Support

Early CKD Support
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Thankyou

I'm not sure how this works. All I know is I was very.dissapointed to learn that I have had kidney Disease since 2011.i only found out a mth ago.

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I’m so sorry to hear that! That’s totally unfair but who said life was fair! Do you know what stage your in? I hope your Doctor is on top of things at this point or I would surely replace him. I hope you get the answers you need to understand Kidney disease.

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I've had ckd since 1996. Only found out 2.5 years ago. At stage 3A. Just turned 61.

I'm convinced I'm gonna die some day, unlike all the others on this forum. ;)

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Hi Marvin8,

What was u r eGFr at 1996 when it was diagnosed?

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Probably in the 80's. Creatinine was 1.1 and all I remember was that my GFR was within the reference range. Today, it wouldn't be. Mine is now 1.36, but my Cystatin-C puts me at 85, which is a good prognosis. My earlier comment was made to be tongue-in-cheek. Point being, we're all gonna die some day.

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We are all going to die some day. Everyone here knows that, but we are also doing what we can to improve our health!

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You are correct.

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I now know I am going to die. From Cancer. Within a year. I also have been stage 3b for past 18 months or so. Just in my opinion as a person who faces certain death, relatively soon. When illness or its equivalent strikes your life, you have to make choices. Do I want to wallow in my sorrow, react to every kidney pain as if "this is it", wake up each day and wonder. Think of nothing but what it will be like in the end, with dialysis, etc. OR do I want to fact the reality. Those with CKD MAY or MAY NOT die from CKD. (Actually most people who die from failed kidney's die from cardio vascular events caused by the kidney). It all depends on what "kind" of CKD do I have. Am I just another of the thousands upon thousands who are labelled with CKD, because of the advent of the egfr calculation, when really the likelihood of complete failure is very low. Or am I one who has a diseased kidney. Was it removed. Did it have cancer. Did the cancer spread. Do I have other additional diseases such as diabetes, etc. Conditions which naturally may lead to stage 4 or 5. My outlook is this. I can spend my remaining months, years, depressed, worried, living at doctors offices with unending tests, monitoring my every move and consumption of food and drink. Or I can live as normal as possible. Quality is much more important to me than quantity. We are NOT NOT NOT all going to die from "CKD". You can help yourself. I reduced my creatinine from 1.8 or 1.9, to my latest 1.22. Just using common sense. Life is not meant to be lived to worry about death. If you asked me 10 months ago if I thought I would live a normal life, I would have yelled yes. Then the cancer returned. There is no written contract on what our death day will be. It comes out of no where. I am proof of that. Don't assume the worst or the best.

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As usual, your attitude is great! You are in my prayers everyday😀

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You definitely have the right attitude. My comment was intended to be tongue-in-cheek. Best wishes to you on your journey.

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Thanks bro. This was helpful for me. I have diminished capacity-not diagnosed with CKD becuase my numbers are good. So, in that egfr land between 60-94. Definitely a wake up call at 53 that I’m just declining and have made adjustments (increased fluid, low sodium, no caffeine, moderate protein) to start being healthy as possible. Some days, I have been putting myself on dialysis already...:lol.

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Yes many times I too thought of dialysis, and bad things. It is natural. Just don't let it be become how you think all the time. I did all the things to improve that you are doing (adjustments) and they too did not seem to work for a while, but as I said I got back to creatinine of 1.2. It takes time. You will be fine.

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I don't u derstand the numbers. What is my stage. Stage 3.what happens now. I live with Osteoarthritis it's pain every day 24.7.if they say Rimmition. What does that mean. Kidney Disease gone could come back. My memory isn't what it use to b. Imm on mst and gabbapentine.

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When they say remission, they mean the disease (not sure what they told you what is in remission) is not progressing and in fact is likely decreasing. I have never heard that term used for CKD. Perhaps they were talking of your other ailments. Now I am only guessing. But perhaps your CKD was caused by something they found wrong in your kidney, fixed it, and it is well now? It is not unusual to not understand what "they" mean. So go to your doctor and tell them. Ask them do you, or do you not, have CKD. What is in remission.

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I saw stage 3 kidney disease I phoned to book an app and reception ist asked why. So I told her after finding out about kidney failing I need to speak to a Dr. She was the one that said. It's in rimmition.i said. What. What do u mean. I then put phone down. Crying. Fuming. Asking. Myself. Wtf. I will just phone in 2 days. So I will call tomorrow.

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Many on this forum have had a similar experience to yours. My doctor didn't tell me. I found out that I had CKD by going to the LabCorp portal and viewing my labs. When I brought the subject up, she said not to be overly concerned about it, and downplayed its importance. So I began my own investigation and, like you, wound up here. There are many knowledgeable members on this forum that have been dealing with this problem a long time. Don't get discouraged. You are at an early stage, and much can be done to slow the progress of CKD via diet and exercise. I was at GFR 53 on March 28th when I found out. I modified my diet, and on May 28th, my lab results showed a GFR of 63. I'm 78, and expect to be around for another twenty years. Personally, I recommend the book "Stopping Kidney Disease" by Lee Hull. Numerous sites will give you the CKD stages. Here is one

freseniuskidneycare.com/abo...

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Pjams, I'm new to this site. I notice you are taking Gabapentin. I've been on it for four years. No statistics on it for people of my age and I know it affects the kidneys. I wondered if the drug was part of my kidney problem. Have you taken it for long? All the very best to you.

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I have been on Gabbapentine for 10 years. Iv also learned that I'm very forgetful. I can forget with in split second what iv been told. I can't remember or spell words. I don't enjoy face to face conversations any more.

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Yes sadly it can affect memory a little bit, and I do get lost for words mid sentence. I hadn’t realised it until I was at art group and joined a conversation.

I need it though So I can tolerate the pain from nerve endings etc.

all the best. Thank you for replying.

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