Hi Hazel!
Big welcome to Kidney Community. We are so thrilled to have you as part of this space. As @Beanbag mentions, you are in the right place to ask questions and have those discussions you can’t with others who don’t have kidney experience. Those are fantastic recommendations too @Beanbag!
Brogan
Thank you for your information it has helped with diet and drinks. I am not sure what bread I am supposed to eat as there seem to be contradictions on whether it should be white or brown. Hazel.
Hello. Hazel. White bread without the seeds. It is a bit more risky to diabetics, but they/us can counter that with medication . Whereas there is no treatment commonly available for excess potassium in the system. Lesser of 2 evils is white. Best Wishes B
Hi Everyone
I thought I would say Hi today as I am feeling a bit overwhelmed. I had physical symptoms of FSGS aged 35 and a biopsy backed this up and for 20 years I was treated with blood pressure tablets. In June 2021 I started to feel unwell and by 2022 I was back in hospital with a severe attack of FSGS. I was put on steroids which messed with my diabetes, I became disabled had to learn to walk again. I have all sorts of muscle and nerve pain, its been a challenge. Several treatments later (known not to really work with FSGS), I am down to 25% kidney function. This week my nephrologist spoke of dialysis and transplants. In the mean time Ive started mychophenlate with heat intolerance during the day and shivers at night. There is a podcast on the use of lipoprotein apheresis in FSGS kidney transplant to stop reoccurrence of FSGS has anyone heard of this? My family do not really understand my condition and how hard hitting a dialysis or transplant news is. Although I am 58 it is still hard to here a parent say ok can we get on with enjoying our holiday now.
Wishing you all a very pleasant weekend!
Pynkie
Im really sorry to hear all that your going through. I hope things will get better and that your family will begin to understand
Hi I’m sharron been type 1 for 58 years I’m currently stage 4 kidney failure on 26% I’m terrified I know I’ve gt th have dialysis I dnt no what dietvtp follow diatitan says not at that stage yet surely its etter ro start self protection now ? I dnt no where I am x
Hello Sharon , Welcome to our forum . I am stage 4 as well. and EGFr 21 , I think that if you stick to the right diet , you can postpone dialysis for a while yet. Drink plenty, at least 1.5 litres a day watch your potassium , do not use concentrated squash or high juice. and Ribena. Avoid high potassium foods such as Bananas, tomatoes, nuts and whole grains. Cut down on dairy products, watch your salt intake and try to use as little sugar as you can. Avoid Marmite, Bovril and cresses, (Water and Mustard). Please get back to us if you need more help. Best wishes B
Hello! I found out about this forum in this month’s Update magazine. I look forward to reading about people’s experiences, and maybe sharing mine can be of some interest too.
About my kidney-related self: I crash-landed into ESRF about 14 years ago - I went from visiting my GP with what I thought was a chest infection to my first haemodialysis session in about a week. After nearly 4 years of dialysis, I was fortunate to be called for a transplant, and am now coming up to 10 years of mostly stable function. I’ve had a few hospital stays from infections etc, but otherwise, life is fairly normal.
Hello and welcome!
What an incredible journey you’ve been on. To go from thinking you had a chest infection to starting haemodialysis within a week must have been such a huge shock. It really shows how suddenly kidney disease can change lives overnight. I was fortunate to have a steady decline but it was still within 3.3 years from diagnosis of IgA Nephropathy to dialysis.
Four years on dialysis must have taken a lot of strength, I’m on three years and some days are so exhausting and I’m peritoneal dialysis. I have heard haemodialysis can be so much more aggressive. It’s wonderful to hear that you have been able to receive a transplant and are now coming up to 10 years of mostly stable function. That gives so much hope to others reading your story. Even with the setbacks of infections and hospital stays, it’s encouraging to hear that life is fairly normal overall. I hope to be in that position one day.
Thank you for sharing your experience, and I’m sure many people here will find it both interesting and reassuring. Wishing you continued stable health and many more good years ahead.
Hi @pcl, welcome to Kidney Community 
Thanks so much for sharing your story and that you found us through Update magazine! Sounds like you entered the kidney disease world rather quickly, which can certainly be super frightening. It’s lovely to hear that after such a rough start, your transplant has given you many years of stability and normality!
Stories like yours can be incredibly reassuring for people (just like Kidney Community members) who are earlier in their journey, whether they’re facing dialysis or waiting for a transplant. We’re really happy you’ve here, and I hope you find the community supportive and useful 
.
Brogan
Hi @Shona! So wonderful to have you join us here at Kidney Community
Thank you for sharing your connection and your lovely comments on our other posts.
You’ve captured so clearly how sudden kidney disease can be and also given real hope through shared experience. Replies like this are exactly what make Kidney Community such a supportive place. Thank you for taking the time to welcome and encourage others 
.
Brogan
I’m Brenda, I live in Basingstoke, Hampshire, 75 year old. Diagnosed stage 4 CKD. No info from GP. Also have Hf,Af, and several other. Waiting to see consultant about PAD. Oh it’s all good fun.
Welcome to Kidney Community @Brenda! So great to have you with us here .
Thanks for sharing a little bit about yourself and your kidney connection. That sounds like a lot to be dealing with, especially given you haven’t received any info from your GP. You’re definitely not alone in that experience, and many people here will relate to what you’re describing.
I hope your upcoming consultant appointment helps give you some clearer answers and support. In the meantime, please do feel free to ask questions, read through other users experiences or just dip in and out in a way that feels right for you.
Brogan
Hello Brenda . Welcome. Snap ! Same stage, Same lack of interest from my GP. Agree good fun ! What else would we be doing, possibly something much worse. Good luck with your appointment, get as much dietary information as you can. I found it great for shifting a few pounds, all the foods I like are either restricted or banned. Whereas, all the foods I hate or generally dislike are recommended. What did I do in a previous life to upset someone? Best wishes and let us know how you get on , B
3 posts were merged into an existing topic: Your top tips for eating well with kidney disease
Good morning kidney community.
I started my dialysis 7 days ago , im on a machine overnight and i keep getting a negative numbers in the end of my treatment, my prescrption is 2000ml , 1,8 fills. , but in the end my fluid outflow can be up to 3000+ mls, which is -1000+ , should i be concerned with the negative numbers? I have arranged to call my PD clinic later today to hear what they say. And im experiencing swelling legs , ankles and feet. Please someone share their experience regarding this. Thanks.
Hi tyke I’m also new to this site. I have chronic kidney disease and tuberous sclerosis I’ve had numerous kidney bleeds over the years and embolisations its a big part of my life but not my whole life. I’m a nurse part time at my local hospital.
Hi @Thando!
Thank you so much for sharing what you are experiencing only 7 days into receiving dialysis .
You might find it helpful to take a look at our Dialysis topic as there may already be some posts and experiences there that are relevant to you.
You’re also very welcome to start a new post in that section. That can really help make sure others on dialysis see it and can share their experiences too!
Look forward to seeing others responses to your query!
Thanks,
Brogan
Hi @Janey! Welcome to Kidney Community .
Thank you for sharing a little bit about yourself! It sounds like kidney disease has been a long and hard part of your life, especially with the bleeds and embolisations you’ve experienced.
It’s also lovely to hear you’re a nurse too. You’ll bring such a valuable perspective, and I’m sure your experiences will really resonate with Kidney Community members.
Thanks,
Brogan
Hello.
I’m Jean and have CKD stage 4 probably originating from my stem cell transplant in 2008.
The SCT has caused a lot of issues throughout my body where the new cells, unfortunately consider me to be a foreign body!
With an eGFR of 18 I’m just starting to have to decide which variety of haemodialysis I want.