Hi, I’m Bron, I’m 81, was diagnosed in 2024 with stage 3a since when my doctor told me to ‘get on with life but not eat too much meat’. I’m only allowed one blood test a year: the last one showed my egfr was a bit worse. I’ve asked to see a dietitian and/or a nephrologist. All requests have been politely answered with a ‘no’. Apparently I’m not yet ill enough.
I’ve consulted Dr. Google, and am trying to follow a kidney diet. Although I’m eating a lot, I’ve lost 3kg which I’m finding impossible to put back on. Friends comment on how skinny I have become. Has anybody else had this problem?
I’m super active, Keep fit, yoga, walk, cycle, but always have been so that shouldn’t have led to any weight loss.
It’s a nice feeling to be in a community with people who share things going on in one’s life.
Welcome to Kidney Community . Thank you for sharing what sounds like a hugely frustrating CKD journey. Given your family history you would have of course expected clearer communication, and so it’s completely understandable that you feel rather let down by this.
It is great to hear that you have such a wonderful husband (and private chef by the sounds of it ) to support you in all of your dietary requirements. If you ever want to ask any diet related questions, this category would be the best place to pop them: Diet and exercise
I do hope there are some members here who can help out with shampoo recommendations too to help with your scalp itchiness .
Looking forward to getting to know you more @LottyD .
Thank you so much for sharing so much of your journey across your posts!
Your honesty about the fear of starting dialysis, the fistula and the journey towards acceptance will resonate with so many people here in Kidney Community.
Your own reflections about your in‑hospital dialysis are so incredibly thorough and thoughtful. You’ve captured it so well and highlighted that the reality is not just treatment but everything around it. From the lights, the noise, the chairs, the lack of privacy and so much more… those are the parts people often don’t hear about until they’re in it.
If you’re interested is chatting more about your in‑hospital haemodialysis, or to ask people about their experience, please feel free to pop it in this topic: In-hospital haemodialysis
Your story about PKD, PLD and your liver transplant is incredibly moving @Kazrion1234! Everything you coped with from the symptoms, mobility loss, emotional strain and the difficult early experiences with clinicians paints such a picture of strength so please do give yourself kudos for powering through this journey!
Thank for joining Kidney Community. I really do hope that you can find other users here who either have, or have experience with, PKD. It may be worth popping a new post in this topic here to find those stories and connections: Living with kidney disease
Hi Beanbag. Thanks for your kind reply. I think I was having a rare " woe is me " moment in the wee hours of the morning. So far I have lost my womb and my bladder - I just didn’t fancy losing a kidney as well! But it’s a new day and the sun is shining. I can see in the mirror that I look pretty grim but I feel more settled. Your post helped.
Anyway don’t know what I’m moaning about. I’ve got the best husband in the world and a crazy young whippet called Rosie I love to bits.
As you say, it’s a journey and this is just another stage of it. I notice you seem to support a lot of people in the community. Thanks for including me.
Hello, I’m Angela from London-just found out yesterday my mother has less than 15 percent kidney function. So now she is waiting for peritoneal dialysis process to start.
Hi, good to be part of the community. . I’m 52 and have Alport’s, Kidney function is down to 20% but it’s dropping. Feel not too bad, just tired all the time. Presuming this is normal?
Hi Jean! Welcome to Kidney Community, great to have you here with us all. It sounds like you’ve had a really frustrating time over the past few years since being diagnosed with CKD.
It’s positive to read that the doctor you spoke to recently took things seriously and arranged a scan for you, even though I can imagine it was a shock to realise things were further along than you expected. You’ve clearly done an amazing job over the last five weeks making eating habit changes on your own, especially while also managing type 2 diabetes…that’s a lot for anyone to take on!
You’re doing fab at navigating all of this and it’s great that you’re reaching out for support and information now, that’s exactly what this community is here for .
We have lots of different topics and sections for you to explore and create conversations, so please do have a look around for anywhere here that takes your fancy.
I am so sorry to hear about what seems like a rollercoaster of a journey.
It sounds like you’re doing an good job putting on a brave face for others but it’s also absolutely fine to say you’re struggling too. This is a lot for anyone to cope with, both physically and emotionally.
I’m so glad you have joined and will be able to read and learn about how others deal with the ups and downs and how they cope.
I do have my fingers crossed that your upcoming tests give you clearer answers .
Hello, Cannot comment on Alport’s as I do not know what it is? However.. Can comment on a Land Rover.. Our one is a 1983 Series 3 Short wheelbase 88” Cab with canvas on the back Nicely restored with galvanised chassis and a petrol engine .We bought it when we sold the Snail, a 1951 Series One 80”. When everything else is going downhill we have our Landy to go uphill. (Also have a Morris Traveller and a Morris tourer, both mid 60’s). Best wishes B
Hi @Bron! Great to have had you join Kidney Community, thrilled to have you here .
It sounds like you’ve taken a lot on yourself to get through the past 2 years. Please do check out our Diet and exercise area, there may be conversation there that may help or you can indeed start .
Hi @Angelapro! Thank you for joining us here at Kidney Community.
I am so sorry to hear that your mother just found out that she has less than 15% kidney function. I can imagine you are feeling all sorts at the moments. We do have a section here, that already has some very honest conversation about caring for someone with kidney disease. Feel free to check it out or add to the conversation and get the most out of this forum: For carers, friends and family – how are you doing?
We are sending our well wishes to your mum starting peritoneal dialysis and to the rest of your family affected by this .
Hello, Lovely sunny day. Out in the garden. What goes around, comes around. Tomorrow it will be me feeling awful, and I will need help or just cheering up. We have 2 dogs , a 4 year old Nova Scotia Duck Tolling Retriever called Matilda and a 1 year old Finnish Lapphund called Anouska black and white , Certainly worth a google. They make a bad day so much better. Best wishes B
Thank you for yor your advise I will certainly follow that through. I’m just so anoyed that that I was not given help from my Surgery. Thank you for your support. I hope to have better help in the non too distant future.
. Thank you for sharing what sounds like a hugely frustrating CKD journey. Given your family history you would have of course expected clearer communication, and so it’s completely understandable that you feel rather let down by this.
) to support you in all of your dietary requirements. If you ever want to ask any diet related questions, this category would be the best place to pop them: 
.
. I’m 52 and have Alport’s, Kidney function is down to 20% but it’s dropping. Feel not too bad, just tired all the time. Presuming this is normal? 
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