Hi my name is Ann and I was told I had CKD 4 years ago by a GP and I would be passed to the kidney clinic within the practice but that never happened! I was sent for a blood test for cholesterol about 18 months ago when I began to ask questions. Apparently I am Stage 3a and I have requested help from Kidney Care UK and received loads of information from this amazing organisation but nothing from my GP practice unless I request an appointment.
My problem is a UTI which does not clear up after 3 courses of antibiotics and I donāt know what to do next as it is very uncomfortable. Is this a regular problem with Stage 3a or does it mean my conditioning is progressing? I am also getting almost constant back ache and loss of energy.
Welcome to the community @annabella. Good to have you with us. Can anyone else relate to Annās experiences or have any useful advice for someone in her situation?
Hello, Iām 67 and was diagnosed with IgA Nephropathy in 1998 after having a renal biopsy. Been quite well for most of that time but more recently my eGFR has started going down more quickly wavering around from one blood test to the next but currently at 38.
Hi, my name is Kim. Iām 45 and self diagnosed myself in 2022 after 3 admissions to hospital in a short space of time. The doctors eventually listened to me and a kidney doctor came to speak to me. After 2 weeks on the renal ward, and a biopsy I was diagnosed with stage 4 ckd which was stable upto recently. Bloods 2 weeks ago shows Iām now stage 5 with an egfr of 14. I suffered with nephrotic syndrome as a child. Ive also just had recent surgery for a brain aneurysm so feel very drained and overwhelmed at this time. Luckily I have a very supportive family, especially my partner who helps me so much
Hi @Kim. Thanks for sharing your story and welcome to Kidney Community. Sorry that you feel overwhelmed at moment, but good to hear that you have some supportive people around you. Hopefully this online community will also be able to play a role to help you feel others are on your side too.
My name is Johanna, i am 38 from Scotland. I am currently back on Heamodialysis which i do at home. I have had CKD since 1990, having first started PD aged 3 and subsequently Heamodialysis at Yorkhill. I have had 3 transplants over the last 36 years all of which lasted around 10years.
I have been found to have a genetic condition called NPHS2 (i believe!)however, was told for decades i have FSGS.
I struggle with Dialysis and itās limitations as well as the physical aspect however I keep trying for my Husband and child. I also work as a nurse.
It would be nice to hear stories of others around my age with a similar history.
I should see the GP again and explain the above, antibiotics not helping and backache, and mentioning the CKD. They are the way forward to getting anywhere and explaining these symptoms. And donāt be fobbed off.
Hi. Iām Paul and was recently diagnosed with a tumour on one of my kidneys, with the likelihood that it is malignant. Currently waiting for a partial or full removal of that kidney, hopefully next month. Nervous times.
Good afternoon, I am 65 years old. I had my left kidney removed at the age of 12 years (in 1973) after having the left ureter re-implanted into the bladder twice. I have had many bouts of pyelonephritis, kidney stones and utiās over the years. I have now had my right ureter re-implanted into the bladder FOUR times on the remaining kidney. I seemed to turn a corner when I was prescribed Thyroxine for an under active thyroid 15 years ago. A happy coincidence maybe? Who knows?
Hi Thanks for your advice. I will definitely request an appointment with my GP even that is not an easy procedure these days.
I forgot to say in my email, I am 82 years of age and I get the feeling we are discriminated against!
Welcome to Kidney Community @JohannaB87. Thanks for sharing your story. Dialysis canāt be easy. You may find that connecting with others in the ādialysisā area on the forum is a good way to find others going through similar experiences. If you wanted to, you could start a new topic in this area for mothers with young children needing dialysis.
Welcome to Kidney Community @Paul. I hope that the kidney removal happens soon and that itās good news following that. If you wanted to look to connect with others who have experienced kidney cancer, one option would be to start a new topic, perhaps under 'ārecently diagnosedā and invite others to contribute who have also had a kidney cancer diagnosis.
Hi . My name is Sidney. I am a woman in my early 60s. I have had chronic kidney disease for 10 years. I am currently stage 3. I joined this forum because the doctors have put my blood checks down to once a year and they keep telling me I am fine with nothing to worry about. I donāt feel fine, blood in urine was found at last test but later tests proved negative. I currently have pain in my pelvic area and lower back pain. I just wondered if I am being a hypochondriac and should trust the doctors more. Anybody else feel a bit scared and unsure of how there treatment t us going. Hope this is the correct way to introduce my myself this is my first ever experience of this kind of thing. Thank you in advance for your time.
Hi @Sidney. Welcome to Kidney Community. Yes, this is absolutely the right way to introduce yourself. Thanks for sharing your story. Iām sure many people already on this forum also feel a bit scared and unsure with their treatment at times too. I hope you find listening to otherās experiences supportive and useful.
Hi Iām Chris, my husband Gary has just been diagnosed with large tumour (growing outside but not spread) to his left kidney. Weāve been in a bit of shock for the last week, but learned today heāll be treated with a op to remove tumour and kidney. Theyāre hoping it will be curative. It will either be keyhole or if necessary convert to open surgery. Now just a waiting game for op date.
My Mum died of kidney cancer nearly 20 years ago, it had spread before it was caught.
Welcome to Kidney Community @Chalmers72. Sounds like things have been really tough for you, but glad that youāre feeling positive today. You might find it useful to start a topic on āRecently diagnosedā to look to connect with others, or you might also consider posting in the carers, friends and family category. I hope you find our new forum a great place for supportive community.
Hi, Im Michelle. Im being prepped for dialysis and transplant. My sister has started the ball rolling to give me a kidney hopefully before I need to start dialysis. My gfr is 17. Im 56 years old. I had my youngest child at the age of 44. I had a heart attack and triple bypass 2 years ago. Iāve got all of my cardiac tests in a couple of days to do. My husband is on palliative care and our child has asd, so I opted for pd, itās so full on at home. Im constantly shattered as Im going through meno too . I hope everyone is feeling as good as they can do
. My name is Sidney. I am a woman in my early 60s. I have had chronic kidney disease for 10 years. I am currently stage 3. I joined this forum because the doctors have put my blood checks down to once a year and they keep telling me I am fine with nothing to worry about. I donāt feel fine, blood in urine was found at last test but later tests proved negative. I currently have pain in my pelvic area and lower back pain. I just wondered if I am being a hypochondriac and should trust the doctors more. Anybody else feel a bit scared and unsure of how there treatment t us going. Hope this is the correct way to introduce my myself 
this is my first ever experience of this kind of thing. Thank you in advance for your time.
. I hope everyone is feeling as good as they can do