Yes it can be a whirlwind getting this news - if you feel you need more information ask for another appointment with your GP so you can ask the questions you may have. I had to read up on stage 3 before having time with the doctor. It is like GPs do not see the significance until things worsen.
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My name is Hubert West. I had stage 2 kidney cancer 14 years ago,and nodules on my lungs.
My left kidney was removed at Addenbrook,Cambridge, and I have been very well since.
I still have check ups,and the lung nodules have decreased.
I never had to have chemotherapy, just pain killers for 6 months.
I have a large scar on my stomach, in the shape of the Mercedes emblem.
I thank the hospital staff every day for my health, since the operation.
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Hello, Iām Sara and I was diagnosed with CKD stage 3a about 2 or so years ago in a routine blood test. My e-GFR is sinking slightly so Iām now on Jardiance to try to rectify that. No idea why my kidneys are not functioning as well as they should be (Iām only 54). Tests havenāt picked up any particular reason. I often wonder whether it was started by an e-coli and salmonella combo that I contracted in Africa a few years ago or even long covid that I had for six months, but of course this is only me speculating.
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Hello Hubert. Welcome to our forum. Pleased to hear that you are well and things are looking good.How old are you if you do not mind the question? Best wishes B
So pleased to hear your treatment has been so successful! Hubby survived quite happily with only one kidney for almost 20 years. Keep it up! 
Hello everyone and thanks for accepting me onto the forum. I had my right kidney, ureter and small piece of bladder removed as part of a much larger abdominal surgery for stage 4 colon cancer back in 2017. There was no cancer present in it but was removed as had only 4% function as sadly, ureter not stented when it should have been. Beginning of Feb I was in hospital and treated for pyelonephritis. Iāve since had invisible blood in urine. Iāve seen a urologist who was largely reassuring but because of my history, Iām to have a cystoscopy in a couple of weeks. I guess Iām just looking to connect with anyone in a similar position? I felt quite anxious because I only have the one kidney but realise we only really need one. Thank you to anyone reading this.
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Hello Baxter, fellow member of the One Kidney Club.,but, I am afraid that it where our similarities end. I am sure someone will be on here with experience like yours and will be more use than me. Welcome to the forum, I hope it eases your concerns. Best wishes B
Thank you for the welcome beanbag!
The one kidney club! 
Hi @Baxter2. My hubby always said that his one kidney was better looked after than when he had two! Iām glad your consultant is checking it out for you and hope that the results of the scan are reassuring. 
Haha! Thank you for your lovely reply @Purpledaze.
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Hi Iām Lisa, im 46, I have PKD and have been on dialysis (HD Home HD and now PD), for a total of 4 and a half years. My son also has PKD and is at Egfr 35. I have loads of allergies, one of them to the chemicals used in HD which is why im now on PD.
I work 26.5 hours a week, term time only so its nice to use the holidays as a bit of rest time.
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Boil green veg and potatoes to remove some of the potassium. I avoid potato (unless boiled first), bananas and chocolate. Cherry tomatoes are better. Jacket potatoes a definate no. I find eating out the hardest.
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Hello Lorraine,
My name is Paula 61 years husband 64
Sending you hugs, can relate to you so much I also hoping to be living donor matched husband weirdly we were over the moon. Going though work up to be living donor match each stage became a tickbox exercise passing each one got to be honest had never questioned my own health so much.
6 months into work up next on list
kidney biopsy Again looking at this as tickbox due to always being mindful stuff happens.
Oh boy didnāt it just kidney biopsy come back flat no.
At some point in my life had infection which didnāt dissolve evidence is in my kidney !!
Well I have EgFR of 89 which must say is very good no symptoms however invisible blood in urine which doesnāt cause any issues no need to be monitored .
Overwhelming to say the least, my lovely husband is currently pre dialysis EGFR of 9
We have know about husbandās condition since 1994 the dreaded PKD
We followed healthy diet from 1994 which has paid dividends for a longer life without dialysis so we are thankful for that.
Back in late 1990 would dialysis husbandās mum due to PKD.
About to go though this all again with husband
So Lorraine youāre allowed to feel the way you do, my advice speak out involve yourself with like minded people.
Best wishes P
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Hi P
Thank you for your message. Hope you are both keeping well.
My husband has been on dialysis 15 months now and we have been doing home dialysis since October. Very stressful and isolating but positives is more freedom. Pray everyday for the call that an organ is available.
Like you we were devastated to get so far with such positive results to then have the rug pulled but we have to focus on the positives. My husband is well on dialysis and I am coping with doing the home dialysis for him.
Total life change but you do what you have to for those you love.
Thanks again
Lorraine
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Hi everyone, my name is Vicki.
This path is all new to me, having never experienced kidney problems in the past, now 45, I developed very acute pylonethritis and after a rocky few months it transpires that my right kidney is only contributing 18% to my overall function so Iām now awaiting a nephrectomy.
I havenāt had any answers yet as to why this has happened. My consultant is convinced that I may have had this since birth after finding an old CT scan from 2021 that showed my kidney was clearly not ānormalā back then, however, it wasnāt picked up 
After reading more about kidneys and their complexities I am starting to wonder if my bone density issues are related?? It will certainly be nice to find out more. I am such an active person and this has completely knocked me for six.
I guess all I can do is move forward and learn more, safely navigating this new path I find myself on.
Vicki
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Hi Vicky, welcome to the forum. Itās always a shock to the system to find out that parts of our body are not functioning the way they should and you have my sympathy on that. However, if Iāve learnt anything over the years, itās that we humans are much more resilient than we think we are. We accept and adapt. Iām sure youāll cope just fine and youāve found the ideal space to share your concerns and find support.
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Good morning to you both
Great to hear from you
Do hope you both enjoyed the long weekend
Totally understandable the isolation,
We are based in Kent donāt know if you guys have access to a support group
like minded people meet up every 3 months, some people canāt always join in person so Zoom is the next best thing.
We have met some lovely people along the way
All different kidney disease and stages. Carers too
Can I ask what type of dialysis you guys are doing ?
Lighter and longer days will help.
Oh yes the transplant list
Do hope that happens for you both very soon
Always here
Best wishes P x
Sent : PFT
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Hi P
We are doing haemodialysis using nxstage machine, with bags of fluid, gives greater flexibility than having it plumbed in. Although a little heavy (20-25kg), the machine is transportable if you want to go away and are able to take it.
We spend as much time as we can up in the Lake District and get deliveries of all necessary supplies delivered to us up there, just the machine to transport, amazing service, gives us freedom which keeps us sane 
Lorraine
That sounds like a good support group, @p.tong. Our home dialysis nurses used to get as many of their patients together one afternoon a month. We met in the hospital and they had guest speakers or mini craft sessions followed by tea and buns. That stopped due to cutbacks and staff changes, which is a shame. We use haemodialysis too, but we have the static machine in our spare room. Hubby has, in the past, booked holiday dialysis for a week near Hamble, where our daughter and son-in-law live and we spent quality time there. Heās not so keen to leave our home for so long these days (for whatever reason)! Sometimes I can persuade him to go for a short break - we can stretch it to 3 nights away so long as he dialyses immediately before and afterwards. I get to feeling sorry for myself occasionally and go away on my own just for the break. Fingers crossed for a transplant and a more normal retirement!!!
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Hello
Thank you for messaging
The group is a very good way to reach out.
Our group holds two sessions one In Maidstone Kent
The other Canterbury Kent
Amazing group everyone has a say even carers.
Kidney research team also attend along with people that can help with home life money work life all the ingredients which affect us the most.
Currently for us pre dialysis!!
I am rather dot my eyes cross my ts
Husband prefers head in sand approach!
Genuinely believe each journey is different
Large or small
But the one thing we all have in common lifestyle changes.
Husband has PKD
Knowledge is a blessing and a curse
However since 1994 aged just 32
Took the bull by the horns healthy diet little steps but thatās helped us to reach 64 without dialysis.
Due to PKD inherited, diet from the start can help
Monitor blood pressure
Question all medication
Your kidneys will thank you for it
We knew nothing in 1994 and dialysis was a shock with husbands mum
We did home dialysis in the late 1990.
I look at kidneys the same as doing a load of washing.
If you been naughty your going to need a 90 degree wash
Which will make you feel groggy
If youāre been so so a nice 40 degree
Super good 15 degrees.
Kidneys and body will thank you for looking out for them.
In other words take care of kidneys to the best of your ability.
Try not to stress which is easier said then done
Your kidneys will thank you for it only needing a wash at 15 degrees 
Wishing you loads of luck for a transplant soon
Best wishes P.
Sent : PFT
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