Hello Peter, Welcome. Lost my left kidney in 2018, large tumour found. Nothing much happened for the first few years and then my EGFR began to fall. You do not say how old you are as I think that the elderly, like me, do not cope as well. It is unfortunate that your tumour was malignant, did they get it all or is there suspicion some is left. Try not to worry, and try to utilise the diet suggestions that they may give you. If not please request them, This is much better than the alternative ! Best wishes B
Hello George, welcome to the kidney community forum. I hope someone sees this who has had similar experiences soon and can give you some advice, it may be worth keeping an eye on the topics discussed in our categories section too. The only advice I can personally give is to speak to your dementia charity and see if your volunteering shifts can be moved around a little to accommodate for dialysis so you can still do both. Thatās wonderful that you volunteer, long may it continue. Have a lovely day George, Beccy
Good morning Brian. Hopefully someone spots this message who has been through a a similar situation and can give some top tips. This may be something you have already sorted but weād really recommend speaking to your doctor about pain management. If what youāre doing isnāt working then get the experts to support you and your bodyās needs. I hope you find something that helps soon, Beccy
Good morning everyone. My name is Julia and Iāve had kidney issues since the age of 11. I had infections one after another for years that progressed to kidney disease. I was stage 3a and then 3b for years. Then I had to have a liver transplant (another long story) and the immune suppressant medication has really hit my kidneys bad. Iāve now been at stage 4 for 5 years. The reason for just joining this forum is because this past winter Iāve been suffering from joint pains in my knees and ankles and my ankles have been swelling up and getting a lot of stiffness when walking and I just wondered if anyone else suffers from this and whether itās a common symptom with kidney disease.
Thank you
Hello Julia. Welcome to uur forum . I can understand your joint pains, I have them too. I admit to putting it down partially to old age , but they are evident regardless. I do not have swollen ankles, could this be water retention ? Let us hope that the arrival of warmer weather brings some respite. You might find that some moderate exercise might free things up a it. I have been stage 4 for many years and am frustrated to see my results indicating an arrival at stage 5 in the not too distant future unless a miracle happens. Best Wishes B
Hi Iām Anne have been diagnosed with stage 3b chronic kidney disease caused by naproxen I was given for my osteoarthritis of the hip waiting for a hip replacement Iām 57 this has all been a big shock any advice would be great x
Hello Anne and welcome . I think the best advice that I can give you is to keep a close watch on your potassium level. With your kidneys functioning at below par, there is a tendency for potassium to build up in your system This can result in muscle weakness, numbness, and nausea, and even heart attacks. Try to avoid high potassium foods like Bananas and tomatoes, beetroot , wholegrain breads and nuts. Limit dairy foods and use alternatives if possible. There are lists of What to eat and what not to eat or limit online. I tend to take notice of thhe NHS hospital posted lists as others can be contradictory, You , like me(stage4), are not on dialysis , so having treats or breaking the rules is a matter of balance , an excess of one needs a cutback of another, It is a regime that develops over time and with regular readings you get to know what suits you and what you can and cannot do. Good luck and let us know how you get on. there are many people on here with different types and stages of kidney disease. You have come to the right place. Best wishes B
is there any other meds i could use to help with the pain and help me sleep better, and is there a diet sheet i could get to help me with my intake of the correct foods.
Hi Brian, we cant give you any specific medical advice unfortunatelly but weād really recommend you speak to your doctor about this. What works for someone else might not work or be right for you, best to check with a health professional that knows you. I hope you get some help soon. Beccy
Hi, My name is Christine. I had a transplant in August 21 after being on the list for over 4 years. I had glomerulonephritis when I was about 61 which consequently damaged my kidneys. I am 71 now and feel very fit and my lovely kidney is working well. I had a fistula created ready for haemo but it was never used as I got the call just before it was needed. I do have some minor problems with my fistula arm as there is a narrowing through the clavicle area which squashes the blood flow and causes the veins in my arm to get bigger as the blood is forced back down towards my wrist. However it is something that I can live with. Very thankful to my deceased donor.
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Hello Christine. Great news that most things are working well. There is always some things that can always be better ar our age. Nice to hear it is liveable . Best Wishes B
Hi everyone,
Iām new here, my name is David.
About three years ago, I was diagnosed with high blood pressure and stage 3 chronic kidney disease (CKD). My GP didnāt seem overly concerned at the time and started me on blood pressure medication, which has helped keep it under control. I should also mention that I lost my right kidney following a road traffic accident back in 1970.
Since then, a number of other health issues have come to light. I have a large aneurysm in my chest (aorta), which isnāt quite big enough for surgery yet, so itās being monitored. It does feel a bit like living with a time bomb. However I am a bit apprehensive about another surgery as I had a massive blood loss after a simple hernia repair last year. I had to be readmitted two days later for another op to remove the blood clot. I was told this is due to my abnormal clotting system and nothing can be done about it. I also have severe scoliosis, along with chronic lower back pain and sciatica.
Another ongoing issue is liver fibrosis caused by chronic hepatitis C. I was told there isnāt much that can be done and to just live with it.
At the moment, my main challenge is managing my sodium levels. If I drink enough fluids to protect my kidneys, my sodium drops too low. On one occasion it fell to 124, and my GP sent me to A&E. After waiting eight hours, I was told to go home and restrict fluidsābut I didnāt receive clear guidance on how to do that, either from A&E or my GP.
So thatās a bit of my story. I know we all carry different burdens, and it helps to share them. Just knowing that someone out there might read this and understand makes me feel less aloneāand gives me strength to keep going. I am 72 now.
Thank you for reading.
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Hello David, Welcome to the forum. I can remember being 72, that was when I lost my left kidney due to a tumour . It does sound bit strange, we are all told to drink and keep hydrated to keep our systems flushed out. I have heard that the optimum fluid intake is about 1-1 1/2 litres a day. A intake of more than this can cause āfluid overloadā , which can cause swelling of the ankles, raised blood pressure, headaches and other problems. Is your fluid intake more than the recommended amount ? You are certainly not alone on here. We all learn from each other and I find the support and/or just the interaction both refreshing and educational. Best wishes B
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Hi Beanbag,
Thanks for reading my story and make me feel welcomed.
I do keep the water consumption to a max 1.5 l a day. Moreover my gp said you need to go on low salt diet for your blood pressure.
It just confused me, more salt to stop sodium going too low but not good for your bp and aneurysm time bomb in my chest, or eat more salt to avoid it go low with serious consequences. I am still struggling with it.
Kind regards,
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Hello David, I am as confused as you. The advice appears to be contradictory. I suggest you ask this question at your next appointment and point out the dichotomy. You cannot win on the advice given. Can both the blood pressure and sodium questions be answered independently, such as taking a blood pressure tablet to counteract the salt intake problems? I hope you get this sorted out soon and your GP addresses the question. Best wishes B
Thanks Brogan. I appreciate everything you say. Having a serum gel brown monovette blood test next week with follow up appointment the following week. Never had one of those before so not exactly sure what that is about but hoping it will clarify whether I am just having an unfortunate dip or beginning to deteriorate. Either way will be good to know. Iām a better the devil you know sort of person.
Thanks again to you and all the community. It helps a lot.
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Welcome to the forum, @David8! You sure have been through the mill over the years but you sound quite philosophical about it, which is the best way. It does help to be able to share your experiences and concerns with other people who are coping with similar problems! 
Maureen
Hi Beanbag,
Thanks for the advice. I donāt have the solution to this issue now. It seems as though the sodium is loosing through the kidney, however my potassium level has never been a problem. I am due to have blood test check next week and will see the gp the week after for a review. Hopefully I will have some answers to this.
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I never received any help from my GP until i got to stage 3. My nephrologist at the hospital has been amazing. My advice would be donāt worry, youāve got plenty of time to do that later on.
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Thanks for your reply but my concern is slowing down the progression from stage 2 upto stage 3
Also the not knowing of how things are going to get
I can see myself being told at stage 3 that if i had had better advice from mu GP things might have been better
Stephen Mulligan
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