That is nice to hear. Support is very important both physically and mentally. Best wishes B
Hi I’m Sarah I was diagnosed with CKD in June 2024 which went down hill fast to kidney failure in 6 months I had my graft done in march 2025 & started dialysis straight away firstly by a neck line for 2 weeks then using my graft. I sometimes have problems when being put on due to clots that have formed or heavy bleeds when coming off. This sometimes makes me anxious light headed or have severe headaches. I am also anaemic so need iron injections every Friday, I have gone from being diabetic to producing too much insulin in which my body dumps it into itself this is called dumping syndrome. I have had to learn to try to eat 6 small meals/snacks aper day in which I struggle as I am never hungry. I have lost 44 kilo in the time I’ve been on dialysis and no longer take blood pressure tablets or diabetic medication.
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Hi Everyone - I joined this forum as I need some advice on where I go next with my problem. I was diagnosed with CKD2 from a routine blood test (which also showed that I had diabetes type 2). This was more than 25 years ago. (74 years old now) I am now classed as CKD 3b. My latest ‘numbers’ are Egfr 34 and creatinine level is 131. My blood pressure is 122/68. I also have Atrial Fibrillation and take blood thinners. I also had a lobectomy last June because of lung cancer.
My problem is blood in my urine. My GPs note is as follows (30th March 26). “Problem: Blood in urine - haematuria (XE0rU)
History: STILL HAVING BLOOD IN URINE SAME SINCE MID FEB
Examination: 2nd cystocopy 10th dec and then had CT renal tract on18th dec
Plan: expedite letter to urology”
I have had no response despite several voice mails to urology and am so frustrated with whole thing. Blood in my urine started last July and has only given me 5-7 days of respite. When I rang my GP the receptionist said that the Urology dept would be very busy and that it would take time for a response. The blood in my urine is very obvious and has had a grading of +++. Where do I go next? Does anybody know? Thank you for reading.
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Hello, Welcome to our forum. I am sorry to read of your problems. I have no knowledge of your condition and do not feel that I can honestly comment. My initial thoughts were UTI which will need antibiotics, but only tests will verify.There will probably others on here that may be familiar and can advise. Being a Bank Holiday it might be later on. In the meantime I wish you well and hope you can enjoy this day off. Best wishes B
Thank you Beanbag. My urine samples have mainly shown no infection. It was good of you to reply x
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Hi Mary here, I was diagnosed 18 months 2 years ago? I’m still not sure what bloods I was being checked for as I also have a thyroid issue and my GP/hospital do t tie up withe results… anyway move. So I get a text telling me I have CKD and tgat was it? I’d never heard of this ? Kidney/dialilses but that was my knowledge. So I called for an appointment and got a phone call back, to be told dont worry its an age thing? … OK who was I to ask a question , other than accept it. Yes I’ve started reading up slowly and trying to cross referance things. Along with finding out about diet! It’s early days of my reading up as I’ve spent the last 5 years reading up on thyriod stuff after being hospitalised with that. …
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Hello Mary, Wow that is some story of incompetence. It never ceases to amaze me how some of these people manage to hang on to their jobs. CKD is not an age thing or we would all get it at some time. Continue with your reading , so I will not go into it here. If you want advice please let us know. Chin up. Best wishes B
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Hi nick hear I’ve been suffering with ckd for nearly 39 years and I was diagnosed with ckd when I was 4 year’s old. I’ve been on daylays for the last 3 years is there any one out there that wants to talk about life with ckd
Hello Nick. Welcome. That is an awfully long time, I cannot imagine it. You mention ‘daylays’ , could you tell me what that is? as I haven’t a clue.You have come to the right place as CKD is what we mainly talk about, and there are quite a lot of us 1000+ if memory serves, which it seldom does. Fire away! Best wishes B
Dialysis is used to clean your blood and get rid of the excess fluid in your blood. This 8s only used when you kidney function is blow 10%
I hope that this helps you
If you want any websites to look at just msg me hear
Hi All,
Thank you for letting me join this group. I am an end stage kidney patient in my 40s who lives in Dorset, had a fistula formed but not yet on dialysis, joined this group to connect with people in similar situation to me and I would be interested from hearing from others who live in or around the Dorset area, of any meet up groups that exists.
Have a good evening all
Mike
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Hello Mike, Welcome to our forum. I cannot comment situation as I have no experience of it, but, I am sure others will respond. Best wishes B
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Hi Mike!
Welcome to Kidney Community 
.
Thank you for sharing your kidney connection - I hope you are able to make those connections to help share lived experiences!
As you are based in the Dorset area, you can join this group (of which there are a couple of members): Kidney Community - South_West_Regional_Group
Brogan
Hi there Mike my name is nick and I’m 43 year’s old and been on dialysis for just over 3 year’s
If you want to talk about dialysis you know where I am
Hopefully this finds you well
Nick
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Hello kidney community, has anyone experienced sweet taste in their mouth due to dialysis, how do you get rid of the taste? Please share.
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Good morning @Thando!
Around 1 in 3 people to experience a change in taste, particularly those on dialysis or later stages of kidney disease.
I am sure another member of kidney community will relate to your experience
Sometimes posts get lost in this intro section, so please feel free to create another post over in either the Dialysis or Diet categories.
Take care,
Brogan
Hello, my name is Sandra, I am new to this page, back in March my doctor told me my kidneys not working properly he put me on tablets, when I had check up with the nurse for my diabetes check up, which came back really good. I asked about it all she looked at my notes to explain I have ckd stage 3, I was bit shocked I guessed there was problem as I had kidney stone back in October last year. I am trying to get use to this but sometime I am in pain on my right side feeling tired feeling low and joints in my hands feel stiff not sure if it all related plus trying to change the way I eat but unsure what to have as I am a fussy eater x
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Hi @Sandy1, welcome to Kidney Community!
Thank you so much for sharing your story. It’s completely understandable to feel a bit shocked after finding out you have CKD, but you are in the right place to connect with others who have experienced similar.
When it comes to food, it can feel really overwhelming at the start! If it helps, we do have a Diet section where people share simple ideas and what works for them.
Take care,
Brogan
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