Are the symptoms always the same?

[Love101cats]

I'm sure the answer is no. But being diagnosed at a time when you don't have personal contact puts you at a disadvantage. So I know all the big stuff but I dont know how my body is supposed to feel. So my GFR is now 28.5 just in the stage 4. Can anyone similar just tell me how they feel on a bad day and how they feel on a good day? I want to know what to expect but also identify aches and pains that may be related to kidney function or not. Thank you.

[Hidden]

The symptoms of CKD come and go. Do all you can to keep mentally "even" on all your days. Try not to get too high or too low at ant one time. In other words, don't get too high when you have good lab numbers or too low when you have poor numbers. Keep mentally busy with projects you can do every day. Don't look for excuses to get yourself in a bad place. At the very least read something that you would consider a guilty pleasure. Leave the self-help reading for good days you have.

Build a network of folks you can share your good and bad times with.

If you have a hobby, even if it's something you haven't done it in a while, take it out and start again.

Best of luck

[Love100cats in reply to Hidden]

Thank you. Im trying to separate symptoms of heart,pancreas and thyroid function from kidney as I have telephone consultation tomorrow with specialist. I didn't want to end up wasting precious time talking about non relevant symptoms. Ive read quite a bit but haven't had any tests yet other than blood and one urine test.

[medway-lady]

I felt really tired and worn out at 8% in Oct 2018 now at 24% and it affects energy levels and get tired but otherwise not much else. I go to bed early to lie down but normally read for a bit and sleep 10 hours a night can't stay up late anymore and will not run up Snowdon again but other than that its normal. I do exercise and make sure I drink enough. I also have Rheumatoid Arthritis so sometimes the lack of energy might be down to that as well. I take every day as it comes and try not to dwell on what I can't do but enjoy what I can.

[Love100cats in reply to medway-lady]

Tiredness seems to be the shared symptoms of most organ related illnesses. This week im having the best few days I've had for months. Why? Don't know other than ive stopped worrying so much about it. I had my telephone consultation today and blood tests but have been waiting for months for a scan as I don't know what problem I have yet. Its good to hear from others and compare notes. It doesn't feel so bad!

[medway-lady in reply to Love100cats]

My kidneys went from 89 to 8% due to Omeprazole. I've adjusted now but it took time to get used to the new life. i can't do somethings and I'm so glad they didn't do to much to me when it happened and I was in hospital. My function is pretty stable now and I think I'm lucky as now whilst I can't ramble as I used to, I can walk and I just take it a bit slower. It could have been worse and my injury was subject to a serious incident report it was an alert RA registrar who saved my life. And staying as well as you can is vital.

[medway-lady in reply to Love100cats]

I should have said I had a CT scan and biopsy in hospital as no now knew what was wrong. A visit from the ICU don't worry nurses sent shivers down my spine but honestly I've met some lovely doctors and nurses. They told first they though cancer but it wasn't then dehydration and no again and no cysts or disease either. So one they've looked at the likely they look for the unlikely but I went into the "we hav'nt got a bloody clue so sending for the specialist team from another hospital. They came and did a biopsy 25 % dead kidney and only think left was medical injury. I was bitter but not now as not going to worry about something I can't change. So yes I think worry plays a big part I've been offered a small dose of steroid and used it very very rarely as it does impact on the RA. I usually wake up tired like having hangover but it does lift and that is probably worse thing just once I'd like to wake full of energy.

[Love100cats in reply to medway-lady]

It sounds like you have really been through it. I must admit that most of my years of illness post stroke in 2001 have been spent at home. Ive had very brief periods in hospital rarely more than a few days. They check me out, diagnose me and then send me home so now I'm juggling heart, pancreas, thyroid and kidneys. Everyone is really nice but its confusing getting information from 2 different hospitals and a clinic as well as g. p. etc. But like you say I'm grateful for what life ive got.

[medway-lady in reply to Love100cats]

I also have Thyroid failure (Hashimoto's , Cylindrical Brochectasis and Rhumatoid with 2 hospitals involved as have to go to the County Renal Centre of Exallance and our huge local hospital, but it really isn't an issue they do talk to each other.I was told think about it as a pecking order in terms of danger so priority must always be the CKD then thyroid as again you die if its not treated then the lungs as we all need to breathe then the RA which hurts, can deform but won't kill me. I have a relatively normal life I admit not able to ramble as I used too but I can and do lead a normal life and it is all under control. xx