Welcome @Graza123!
Huge welcome and thanks for joining. I am sure our wonderful members will be able to help you find answers to, or chat about, both CKD and anti-GBM.
Thanks,
Brogan
Hi,
I am Maureen and I have stage 4 kidney disease. I am hoping for a transplant this year. It was all very sudden, but I am keeping positive. I also have thromHbosis and blood cancer and now have got bad hip trouble. I just day each day as it comes and I have very supportive family.
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Hi Maureen!
Big warm welcome to Kidney Community. I hope this space can help to grow your already supportive network 
Brogan
Hello Maureen, Nice that you are on here. Sounds like you are having a rough time. It is all that we can do, one step at a time, and keep our chin up. Best wishes B
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Hi I am Annie aged 69
I have lived with ckd for quite sometime but lately i seem to have more issues. Fatigue is a big problem. My gfr was 35 few months back - advised this was due to urine infection. At last check it was at 48.
When i finished work i thought i would start to feel better but thats not the way oot has been.
I also have a lot of stress - family issues.
This is how i feel has anyone any suggestions please?
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Hello Annie. Welcome to our forum. Fatigue is an issue with a lot of us and it is difficult to overcome. I try to keep myself busy in garden and when I have had enough I settle down with a book.Tht often ends me to sleep, which again poses problems when I go to bed. It is not unusual for me to be up at 2am again reading. Over the years it is just a routine I and my wife have t used to. She is early shift, up at 5am and I am late shift up at 9.30. It suits us and has just developed over time. I think that at 80 nothing is going to change much now. My last EGFr was 212 in January, next test is in a week or so. So my advice is āGo with the the Flowā try to adapt and get back to enjoying yourself. Family pressures are secondary to your health and wellbeing. Best Wishes B
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Hi @Anniemay!
Welcome to Kidney Community, so please you have joined this group.
Iām really sorry to hear that things have been building up for you - it sounds like youāve got a lot going on!
When Iām feeling overwhelmed, I find small distractions really helpful. Iām a big reader, and getting lost in a book/kindle (even just a few pages) can give my mind a bit of a break from everything. Iāve also recently got into audiobooks, as when I would go for walks my mind would still race, so this gives me something to focus on.
Just know youāre not alone and itās really okay to take things one step at a time
Brogan
Hi
Thank you for your e mail.
Delighted to receive a reply.
It is wierdly enough good to hear that i am not getting my symptoms all in my head and this strangely enough helps me to accept same. I have been beating myself up a bit and sometimes feel it is all in my head and that i need to catch myself on.
Your e mail mentions go with the flow and that sums up entirely how i will now hopefully accept my way forward. In truth that is a bit like what i have been doing but when the tiredness sets in i have been struggling and trying to push on - without much success.
Your sleep pattern is much same as mind but thankfully now i dont have to stress about getting up early for work. My husband gets up at 4.45 - he can get to sleep as soon as his head hits the pillow. I do know i toss and turn a lot and sometimes get up and go to spareroom with magazine in hand and at some point get to sleep.
Once again thank you - i know what you have said will help me immensely.
Annie M
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Sorry , just reread my post. My EGFr is 21 and not 212, only in my dreams ! Best wishes B
Hi B
I thought you meant 21 - does your level fluctuate much?
Anniemay
Hi Iām Gill & have an ultra rare illness that killed both my kidneys back in 2013. I was put on the transplant waiting list in 2014 & was very lucky & grateful to receive a deceased donor organ in 2015. Sadly that kidney has now come to the end, after just over 10 years and I will shortly return to dialysis.
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Hello Gilly. Sorry to hear your news. Is 10 years the norm for a transplanted kidneys life or does it depend upon the age of the donor? Also, what sort f time do you expect to be on the waiting list before getting a replacement ? I am aware of people on here awaiting their 3rd transplant. Best wishes B
Hi @Gilly!
Iām so sorry to hear that your transplant has come to an end and that youāre having to go back on dialysis
If you feel comfortable sharing, do you know which type of dialysis youāll be starting? Weāre all here to support you!
Brogan
Iāve just been diagnosed with stage 3A CKD. I would not have known Iād got it as the blood test was for other reasons. My paperwork said 'normal no action ā but my readings were 52 in Jan 55 in Feb and 50 in April which meant I was diagnosed last week. I have been left to it till I have an ultrasound. Needless to say to say Iāve given Mr Google some hammer and all the stuff online is a minefield field field on inconsistent information. I am due to see the dr this morning with a blood pressure diary however Iām supposed to be going abroad to Greece in a weeks time . Itās left me confused about what I can eat while Iām there as Iāve been going there for a long time and thereās a lot of salt in their eg grilling of meats . Iāve just eaten a banana honey and walnut roll on a brown bap which given the info Iām not to eat any of ? Itās so confusing and my husband and I have been arguing and getting very anxious about this āintruderā into our lives. Any help or support I can (give or ) receive will be greatly appreciated
Hello Annie. Sorry to hear your news. I would avoid anything that has a high potassium content such as Bananas, tomatoes , nuts , dairy and dried fruit such as Sultanas, raisin and currents. Also try to reduce your salt intake. It will probably be a good idea to let your travel insurers know of your diagnosis just in case anything should happen while you are away. I suspect that with the premium paid and a diagnosis after payment that it will not be a problem as it is an event that was not a condition evident at the time you arranged your insurance. Please tell your husband that you need his support as that is very important as the changes to your diet may also impact him, unless you want to cook 2 meals every time. The support of my wife is an integral part of my coping with CKD. I suspect he is just a bit shocked , as we were upon diagnosis. It soon settles down and becomes a joint effort to tackle the problems arising as it can happen to anyone at any time. Best wishes B
Thankyou so much for the kind response. I have also been reassured by my dr this morning that we can go on holiday and Iāll see him again after my scan. He said at this time there is no need to avoid potassium as itās only stage 3 A . I made it clear however that I donāt want to decline from this point . I did however have a banana roll with honey and walnuts for breakfast but at least Iām now aware of what I am taking risks with. My husband does all the cooking from fresh and we already eat a healthy diet . One thing I will say is I stopped taking esomeprazole after 24 years and that has definitely lowered my blood pressure back to normal levels ! Iām Quite angry that I was left to repeat prescriptions all these years without review. Anyway I told the doctor this morning and heās taking it off my records. Thanks again for your reply
Hi CRG, I had a telephone appointment with my GP today. Iām stage 3a and have had ckd since 2022 apparently! I asked whether he could refer me to a kidney specialist and a dietitian but he said that I didnāt need to, have you seen a specialist and/or dietitian out of interest? Take care Jo
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Hi ā¦ I hope you are ok. I had the same response. But they sent me to have further scans as I may have a crossed fused kidney or only one kidney based a ultrasound I had. Stage 3 is managed with GP im told.. you dont see specialist until stage 5 I think. I was just sent information about CKD.
Hi , my name is Hazel, age 82 from Norfolk. I was born with one kidney, but was not diagnosed until age 29 when I had my daughter. When I was 50 years old I was diagnosed with high blood pressure, but is now well controlled with drugs. Gradually over the years my eFGR went down and is now at 40.. I also,have osteoarthritis of hip, knee and feet and ankles and am pre diabetic. I try and walk every day to keep myself going. I am concerned about my kidney as never been told about diet or how much I should drink.
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Hello Hazel, I am also from Norfolk, so a special welcome. I am 80 with am EGFr of 21. My nephrologist told me to avoid Bananas, Tomatoes ,Nuts and Dried fruit which are high in potassium, so generally cut down or cut out high potassium foods eg. Bovril and Marmite are āno goesā as well. Reduce your intake of dairy products and keep yourself well hydrated by drinking 1 1/2 litres of fluid each day,Squash/cordial ,(not Ribena), is ok but avoid concentrated or high juice types. Good luck , you are in the right place here.Best wishes B
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