Hi, I am Jo. I am not sure if I should be here or not as I haven’t been diagnosed (to my knowledge) with anything. I am hoping for some clarity here.
I have had kidney troubles all my life, hospitalised several times as a child but I don’t know exactly why and there is no one to ask about this. I have had 2/3 potential kidney stones (all the symptoms but nothing to show on the ultrasound and MRI which I had some weeks after 2 of them).
I do have regular blood tests and my eGFR and CCR indicate CKD 3a and level 2, but nothing has ever been said at the GP surgery. I did send them a message after my last set of results as I had one set marked as ‘abnormal needs to repeat’ the repeated (last set) where slightly worse but marked ‘acceptable - no further action’. Their response was because I was already on the appropriate medications so nothing further was needed to be done.
However, I just feel left in limbo. I have never been told anything about CKD, it is just my googling (dangerous I know) and investigation of my test results for the last couple of years that have led me to presume I have it.
I do have other health conditions so have quite enough on my plate so should I just forget about it and trust my GP’s will inform me if I need to know anything? Or is there something I should be doing myself?
It’s so lovely to have you here. Thank you for sharing your kidney connection. Finding out you have stage 3 kidney disease can feel really overwhelming and scary at first, so please know you’re not alone in feeling that way .
We’re really glad you’ve joined us all the way from the US too ! Feel free to ask any questions, create topics or share anything on your mind.
It sounds like you’ve been carrying a lot of uncertainty for quite some time, which can feel really frustrating and confusing.
While we’re not able to provide medical advice here, we hope this community can be a helpful space for you to connect with others who may have had similar experiences and can share what it’s been like for them.
Hello everyone. I have just been told have ckd last week havnt been for scan yet but iam having a lot of problems that I havnt discussed with doctor yet I was virtually in and out in 10 mins didnt sink in at all. Iam really overwhelmed now and scared of whats to come .no one to speak to . Hopefully this group will help me cope and I can get some support .
Thank you for sharing! You’re definitely not alone here. Being told you have CKD is certainly overwhelming, especially when you’ve had little time to process it all.
Take things one step at a time and be kind to yourself
I have been told I have CKD stage 3a, I have been told to reduce salt and sugar. Is there anything else I need to do?I was put on Omeprazole and have been on it for about three now. I asked the Gp should I be on this after a year. Reading the instructions it’s said you can be on it for two weeks and a max of 6 weeks. He said a lot of people are on it for a long time. I have read on Omeprazole it does say it can cause kidney damage if taken for long periods. I had a blood test in July 23 which said I had CKD stage 3a so I have found out, but was never told about it.
Thank you for replying. Although I am used to the formats of WhatsApp, Facebook, and Instagram etc I have not used the format of a chat line. I hope I have introduced myself properly. Where is my Profile? How do I make a new post of my own? How do I make it go to the relevant place?
Hi, my name is Tim. I’m 71 years old and am the full-time carer for my partner Tony. He will be 80 in July and was diagnosed with chronic kidney disease about two years ago. It’s quite hard work remaining positive sometimes, so I’m glad to have found a space where I can share thoughts and feelings with others in similar situations.
Welcome Tim. Tony is the same age as me and I understand the lack of positives, but the main one is that we are still here. The alternatives will arrive too soon at our age. How does Tony feel about things these days. I am sure that he values your support as do I about the support of my wife. This is still a great life that we are having and there were always going to be hiccups along the way and this is just one of them. I am stage 4 and the upside is I am not stage 5 yet. The positives far outweigh the negatives when you really think about it. Best wishes B
To make a post of your own, you will see a “New Topic” button in the Topics or Categories section. Just click this to draft your own post or question for others to view.
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Hi grannycat welcome to the community I’m also a fellow ckd patient for 16 years it is quite common not to be picked up early but only as a result of some other illness so your not alone .if you have any symptoms or just need a chat always happy to hel0 if I can 8f not theirs many others on here who can welcome again
Hi all. I’m Polly and I’ll be 65 in June. I was born with a renal condition which wasn’t picked up until I was 11, by which point one kidney was atrophied and the other damaged. But I made it to 60 with CKD before my eGFR dropped to the point of requiring dialysis. I went on PD and was on it for 9 mths when I was fortunate to receive a kidney from a deceased donor. And it’s been doing good so far. Look forward to hearing your experiences and learning from you.
Alright mateys, I have just found out that I have ckd and Dr sent me for a ultrasound for bladder and kidneys to see what’s going on. Just waiting on results.
So glad you’ve found this space so early on in your kidney journey. Waiting for results can feel like a long time, so you’re not alone in that and many others here can completely relate.
Yea not bad, still doing the things I used to before. I go the gym 4 times a week and gardening the other days. I’ve never ate processed foods. I am a pescatarian who only eats plant based food and drinks plenty of water. Until the doc says otherwise I’ll just keep on.
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! Feel free to ask any questions, create topics or share anything on your mind.
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