Hi Ceinwen
I think a scan is required in my case also so I am trying to get one organised with my GP.
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Great to have you here @Rae. Would love to hear more about what being a CKD peer supporter for CKD warriors entails. Good to have you as part of the new community.
Hi
New on here, Diagnosed last year with reduced kidney function due to high BP.
I am Gill age 66, i was working full time up to being unwell due to the kidney issue , In a very stressful role, after 8 weeks on sick , i decided to take partial retirement . So now only work 2.5 days. Stress levels are less and im in a better place. It was a wake up call i never expected or thought i needed.
One year on , all the lifestyle changes made , following kidney friendly foods , meds for High BP, Partial retirement . there has been no further reduction, but im not taking any chances and continue with Kidney friendly foods . Even though i miss Chocolate 
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Welcome to Kidney Community @Gill25. Thanks for sharing your story. Sounds like partial retirement was a good move for you. Along with chocolate, we already have a fast-growing list of others food that users are saying they miss here!
Iām Alan, aged 90. I received a living donor transplant in 2018, donated by my wife (for which I am very grateful). Our kidney is still doing well, though because of my age I have a number of other co-morbidities. But I keep active and engaged by involving myself in a number of kidney research projects, as a patient representative. I can recommend it!
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Welcome to the community @Alan. Great to hear that you get involved as a patient representative. Keep an eye on the āGet involved in researchā area, where, as this community develops, weāll be letting you know about research opportunities that you might be interested in getting involved in.
Hi. I am Gina. I have polycystic kidney disease (ADPKD) and now have an eGFR of around 20, so having early conversations about transplant and dialysis. I have known that I have PKD since my 20s. Fortunately, my renal function decline has been relatively slow.
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Hi, Iām Amanda. I have Alports Syndrome. I went into end stage aged 14 and got a transplant aged 16 - amazingly that is now on its 38th year.
Anyone else with Alports on here?
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Hi, Iām Linda. Iāve been thinking about getting some support for a while because I donāt know anyone else who is going through this.
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Hi iam new nice to meet all of you iam stage 2
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I was diagnosed with stage 2 my doctor doesnāt seemed to concerned about it I just want to learn more about it in case it advances
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Hello nice to meet you
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Hi all, my name is Paul and have been married to my wife for 53 years We have a small family with two grown up sons and a few grandchildren. I am 73 years of age and my CKD trip started 73 years ago, as I was born with it.
I did not find out about my kidney problem really until I reached 21, my parents did not tell me, didnāt want to worry me I suppose. I was sometimes ill as a child but thought nothing of it. Then at 21 just after I married I descided that I wanted to buy a house and tried to get an endowment mortgage. Obviously I needed a medical to get an offer on this, and the necessary arrangements for the medical were made.
Luckily the medical was arranged and took place at a doctors near to me and seemed to go well. Until the wee sample I think near the end, it was then that the doctor informed me that I had a severe kidney disease called chronic nephritis, and that I would be very lucky to reach 30 years of age. What a shock to myself and new wife that was, I thought all my plans for a future had gone down the pan. From there on it was,regular visits to hospital for blood tests, a skin biopsy to see if there is any link to the disease and blood test from my mother. But I eventually did buy a house with an endowment mortgage but the policy was loaded, enough said on that.
That was a long story but here I am at 73 with my own house and family that I thought would not happen. Worst part now is that 1 year ago I took a fall downstairs, full flight backwards which damaged my kidneys more so have ended up with stage five renal failure and now go to the hospital three mornings a week for dialysis. But with positive thoughts and technology advancements and not forgetting the NHS Doctors and Nurses I have outlived what I was originally told. Good Luck to you all.
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Its good you are feeling better
Hi alan you have my sons name nice to meet you
Hi My name is Ann, I live in Livingston, Scotland (nr Edinburgh), I am 73 nearly. I have had CKD for a long time but didnāt know because no one told me 
I have something called Medullary Sponge Kidneys which means I get loads of kidney stones and have had many infections, surgeries and lost count of lithotripsy sessions so I guess that all has damaged my kidneys causing CKD now stage 4. For me the itch and the horrible spots are the worst part. Every day is a battle against itching and my skin is so thin and easily damaged. If anyone has any suggestions to help please feel free to say. I use moisturisers, itch relief creams, but nothing lasts long. My head face neck and whole body itch constantly. I have always been active physically and find it frustrating that I am having to cut back on activities I love because of fatigue but still managing to do my workouts and walk my dog just not as often and for as long as I used to. I have had no advice apart from drink plenty and stay active, and no dietary advice at all. I wish I had known before getting to stage 4 as I would have made necessary dietary changes earlier. I have coeliac disease so was already gluten free and already keeping active and well hydrated but could have done more if I had known. Dietary advice would also be welcomed. Thanks
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Great to have you as part of the community Gina. As there are likely to be other new users to the forum who also have PKD, you might want to set up a new topic under 'Living with kidney diseaseā for those with PKD. Hope you find this a good place to connect with others.
Hi Amanda. Welcome to our new online community. I would suggest that the best thing to do to connect with other people with Alports would be to set up a new topic under āLiving with kidney diseaseā focused on connecting those with Alports. Just give me a shout if you need a hand doing that.
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Welcome to Kidney Community @linda. I hope you find others within our new community who are going through similar things to you, and find support from them.
Welcome to Kidney Community @Denise60.