New to all this: I've been diagnosed with... - Early CKD Support

Early CKD Support

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Anythingavailable profile image

I've been diagnosed with Stage 4 CKD for almost a year now. My attitude is like a roller coaster. One day I'm determined to manage my condition, then the next I am too angry to care, then I'm too sad. I can't help but wonder and worry about how much time I have left to live, and it robs me of any joy or sense of purpose. Any good vibes you can spare would be greatly appreciated.

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Anythingavailable profile image
Anythingavailable
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10 Replies
Julesboz profile image
Julesboz

Hi there Anythingavailable, I too was diagnosed about a year ago, but at stage 3. I don't know the cause of your CKD and how you're managing it, but I wanted to reassure you that the vast majority of CKD sufferers never get to end stage and dialysis or transplant. Although I was officially diagnosed 1 year ago, I had a look back at my blood tests and I've been hovering at stage 3 for over 6 years and nobody had told me. In all that time my EGFR has changed very little, in fact, since my diagnosis and now I know how to manage my condition, it's gone up. I would say eat a kidney friendly diet, exercise, relax and overall, don't worry! Stress and worry are no good for any condition, so live your life :-)

Bunkin profile image
Bunkin

Hi! I think we all feel that way sometimes so you’re not alone in that if it helps. I even think that’s one of the symptoms of this kidney disease. The way it makes me feel mentally is way worse than how I feel physically. When you get on the transplant list they actually send in a psychologist to check your mental status!! I have been trying a new herb. Have lab next week and will let you know if it helps. I’m nearing dialysis but I’m gonna fight it all the way. There are new advances being made in the field of kidney disease that we can look forward to in the future. When I’m feeling down I think, we’ve got it better now than kidney patients ever have. Improvements in dialysis. Bionic kidney coming in 2020., ways to slow progression of the disease. That’s a lot more than some diseases have. My relationship with God keeps me strong as I know he’s there with me all the time.

Prayers for you. God can do anything!!

Bet117 profile image
Bet117

Anythingavailable,

Happy that you reached out.

I know that you wish that life was perfect, but unfortunately it is not.

Your feelings are perfectly normal as is fear; as this is frustrating. Feel them.

Take one day at a time. Lean on your strength to get you through the tough moments, love the ones you cherish and let them help see you through.

Rely on the the things that you like to do most to keep your spirits up; be it painting, photography, reading, seeing friends, a good movie.

Remember that you can't control your plight, but you can control how well you take care of yourself; diet, exercise, how well you follow medical plans; keeping in mind that not every person with CKD or any other chronic problem gets to treatments such as dialysis.

Enjoy each moment that you can breathe,feel the sunshine and the differences that you can make in the lives of others just by murmuring a quick word or answering a post here. Know that you are doing the best you can.

Sending you healing and warm thoughts of support.

Please keep in touch- I as well as the members care.

Bet

jillab profile image
jillab

Helloanythingavailable, I too am at stage 4, with an eGFR of 29%, the first thing I will say to you is stop take a deep breath, stop worrying yourself , do you know your eGFR, that is the best way of knowing your kidney function and just how bad you are, I had my left kidney removed approx. 4 years ago ( I won't bother with a very long story leading up to it,) once recovered from the Op. I was sent to see a kidney specialist who simply told me to just eat sensibly and keep myself as fit as possible, I see him every 6 months, and as long as I am staying stable the just being sensible with food stands. I have joined a ladies only renal group (closed group)which has helped me so much with advice about certain foods that it is wise to avoid, but as I don't know if you are male or female I won't give it to you unless you ask for it. One of the main things to avoid is grapefruit juice, as it is very damaging to kidneys apparently, and it is surprising how many other things it is in, like a lot of orange juices, and other fruit flavoured items . So don't worry too much, things don't change overnight. Good luck

Sdtagoo profile image
Sdtagoo in reply to jillab

I would like the link to the ladies rental group. I am a 65 year old female in stage 3b.

jillab profile image
jillab in reply to Sdtagoo

Hi Sdtagoo the site is 'Women's renal Failure Support Group' it is a closed group so you will be asked a few questions before you are signed in, it is just to safeguard all the ladies privacy.

Sdtagoo profile image
Sdtagoo in reply to jillab

Thank you!

curleytop1 profile image
curleytop1 in reply to Sdtagoo

Hello Sdtagoo and Jillab, As a female age 77 and stage 3 CKD, I am also a member of the 'WRF Support Group", but am not too impressed with it, much preferring the sensible information given on this site by both sexes. The women's site is more concerned with emotional feelings than offering practical advice and most of the ladies seem to be at a more serious stage of kidney disease, either approaching dialysis or transplant. I also joined the cooking part of the same site but have noticed recipies that do not seem entirely 'kidney-friendly'. I am trying not to seem negative about it, just relating my own reactions to the posts. Also, as it is a Group on Facebook many people I have never heard of wish to become my 'friend' which I find distracting! Best wishes, maybe I am being too critical - Curleytop1.

athenat profile image
athenat

Hi,

After the after shock of CKD, the most you think about is Dialysis and oh Lord what can I eat now....the what can I eat got me depressed more than the actual CKD stage 3 diagnosis...lol. I am not even a big eater, I just love chips, soda and that danm Pepperidge Farm Kielbasa sausage. It doesn't help that CKD and HTN are all silent diseases that creep on you until the last minute. There is no pain when you eat that pile of sausage, not like someone who has Crohn's disease. So it makes it harder for us to control our diet. So an attitude adjustment made a big difference to me. Life is not just about food. I'm eating to live, not the other way around. This has helped me soo much. But every day is a struggle. I have upped my water intake and started following a renal diet on my own. Hopefully this will help you see things differently. Depression and stress won't help but sometimes they are unavoidable. When I feel like that I start to look at different recipes on Davita and start to look at the kidney friendly diets online. Hope this helps. Do not fall into stress or depression. It will make matters worse. The best thing for you is that you have good and bad days which means you have the ability to shift it. (Some people can't). Shift your mind as much as you can. And remember we are all here for each other.

Sheshechu profile image
Sheshechu

im ckd3 at age 67. I found it on my lab and went to see my MD. He said it was nothing to worry about. I went to a nephrologist and she said #1 thing is exercise. Everything in moderation and eat plenty of fish. I changed my diet and exercise (not daily). I enjoy a beer or glass of wine occasionally. I was very upset like you but I have calmed down. We could get any number of conditions in our lifetime. We really just have to manage it. There are good apps: Calm, Happify, Insight Timer that can help with your anxiety. I am a MH therapist and use these in my practice frequently.

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