Slight improvement at late stage 4.

[Irelandy]

Hey all, I went for a blood test a couple of days ago and my egfr had gone from 17 to 18. Not much but it's better than going down. I have patient view with the NHS so I can monitor all the tests historically.

I feel lethargic and tired all the time and it does drag my mood down. I used to jog 4-5 miles three times a week and now I couldn't even run for the bus. I played guitar semi professionally for about 30 years and now I can barely pick it up.

Just wondering how anyone else at this stage feels, Thanks, Andy.

[Hidden]

With your knowledge of CKD and your own individual health, I'm sure you looked at your iron levels, sleep patterns, and food intake so let's skip those and go right to, "What can you do?"

There are some days when I feel like doing nothing to very little. When that occurs I switch my routines. I read something light, I turn off the news, I walk less, I call one of my grandkids, I listen to music that puts me in a better frame of mind and I make a special meal for myself (still a part of my meal plan) and I take a few naps, especially in my chair outside. When the day is at an end I turn off all electronics and try to get a good night's rest. The next day if I have my energy level back I go back to my regular routine. If not, I give myself another special day.

Take care of yourself.

[Irelandy in reply to Hidden]

Thank you for your kind advice Mr Kidney. I took another look at my stats and whilst iron, haemoglobin, potassium and sodium are all within normal ranges my urea levels are way too high and have been since July '17 when testing began.

I always read your posts, they are full of positivity and good advice.

I think I'll have a be good to myself day and read some James Lee Burke😀

[rabbit01]

I was not diagnosed till I was at 17% and was totally unaware that I had kidney problems. I have to say that once I was diagnosed then mentally things went down hill pretty quickly. Just the stress of living with late stage kidney disease is in itself enough to make you feel less than enthusiastic about life. I spent five years living blood test to blood test. Have you had your other levels checked. For example haemoglobin and B12? These can really knock you for six if allowed to drop too low.

[Irelandy in reply to rabbit01]

Thanks for taking time to reply Rabbit 01, I agree with you that the changes are almost imperceptible. I did voluntary work for 15 years and found myself sitting down a lot though I didn't know why. My boss thought I was just being lazy, but I knew something was wrong.

I also noticed that when I was cycling I got much tireder than usual.

I did take a look at my other stats and what jumps out is v high levels of Urea?

Any thoughts on that?

[Sammi_n_Munk in reply to Irelandy]

Hi again Andy! With regard to high urea levels (I have similar issues with urea and creatinine as well), I looked it up online and have copied the link below, from the Mayo Clinic. I believe the advice is to drink more water, and to speak to your doctor as it can be caused by a number of different things, (eg, kidney, liver, and / or heart failure). I hope this is somewhat helpful. I found it a little depressing and defeating, but still very informative. Lol. Take care! 😊👍🙏

mayoclinic.org/tests-proced...

[Irelandy in reply to Sammi_n_Munk]

Hi Sammi, thank you so much for your replies to my post. It is very encouraging. I had a look at your ref to Mayo clinic info and I must start drinking more water. It is counter intuitive when you have a problem with the bladder not emptying but I'll just have to get past that, and to force myself to take a 20-30 minute walk every day. I take it you are a jazz fan from your handle.

Good luck and God bless, Andy.

[Sammi_n_Munk in reply to Irelandy]

It is counter-intuitive, absolutely. I have difficulty with that too. Every time I take a sip from my bottle, my thoughts are always, “Am I drinking too much? Am I going to be wearing this fluid for the rest of the week? Am I going to blow up like a water balloon?” Lol!

But actually, try speaking to your doctor. Perhaps she / he could advise you better on how much water would be the right amount for you. I know that this kind of thing can differ with everyone.

I don’t have a very high urine output either, so I understand, believe me. In fact, lately, it’s been very little. But this may be due to my high creatinine. From what I’ve read online about high creatinine, it can cause low urine output and fluid retention.

I’m also having some difficulty getting my creatinine down. As a diabetic, I need to eat some protein, and vegetarian diets are not really encouraged for diabetic people as they tend to be higher in carbohydrates. So, it can be something of a juggling act between my diabetes, gout, and kidney issues. Fun, fun, fun! Lol!

It can certainly be frustrating at times, can’t it? Lol! Take care Andy! Keep me posted on how you come along. Talk to you soon! Bye for now! 😊👍

[Herkidney]

I am 20 months post-transplant and I recall that my level of energy went down gradually where I wouldn’t really noticed week to week changes, but when I couldn’t do something such as go for a long walk I would realize how much my energy level had decreased. Once my GFR fell below 19, it seemed that I was tired all the time. My doctor did give me some medications. Speak with your doctor to see if there is any medication that he can give you. Best wishes!

[Irelandy in reply to Herkidney]

Dear Her kidney, Thank you for your reply. It is encouraging for me to know that dialysis helps with energy levels, and that there is life.

I have only realized that my urea levels are way too high. So I must bring this up with my doctor and see if he has any recommendations for medicine.

Good luck to you too.

[Is331]

I’m new to this forum and this is exactly what I wanted to ask. My egfr is 20 and I also feel really lethargic and achy. I know that my vitamin d and iron levels are low so I’m taking supplements for those. Maybe check those levels if you haven’t already. I will take some tips from Mr_Kidney below for the bad days.

[rabbit01 in reply to Is331]

That is one of the problems with slowly progressing CKD. The changes in how you feel are so gradual that you hardly notice them and our bodies compensate as best they can. I was still working full time in a very demanding job when I was down to 17% without even knowing it. I was starting to feel awful but I just put it down to the stress of work and a long commute. I gave up work when I got to 12% as by that time I was really getting rough. Finally started peritoneal dialysis at 7%. Feel loads better now.

I am assuming you're checking all vitamins and supplements with your doctor as some can have a harmful effect on our kidneys.

[Irelandy in reply to rabbit01]

Thank you for your reply and support rabbit01, It is encouraging to know how much better you feel since beginning dialysis, you must have felt dreadful with an egfr of 7, I can't even imagine. My situation is complicated by the fact that my bladder has stopped working and I need to self catheterize, maybe that's why my urea levels are too high. I will check with my doctor to see if my suppliments are harmful to my condition.

Glad you are feeling better, stay safe and good luck 😀

[rabbit01 in reply to Irelandy]

And you

[Is331 in reply to rabbit01]

Oh wow! I can’t even imagine working full time now. I’m lucky because I only work three days a week at the moment with a very understanding employer. I’m glad to hear that you are feeling a lot better after dialysis. It gives me a little bit of hope.

Yes they were prescribed by my renal Doctor, so should be fine

[rabbit01 in reply to Is331]

Yes, I wish there was more focus on how much better you can feel on dialysis. I spent 5 years living from blood test to blood test and the whole thing was depressing. Within a week of starting dialysis the metallic taste I had went away. Well all the best. Take care.

[Is331 in reply to rabbit01]

Thank you for your insight. Stay safe.

[Irelandy in reply to Is331]

Thank you Is331 for your reply, I know how you feel. Mr Kidney is a brilliant member, he always gives great advice.

My Iron and haemoglobin levels are okay, but Urea is way above normal so I will follow that up. Good luck and stay safe.

[Is331 in reply to Irelandy]

Thank you, you too!

[Sammi_n_Munk]

Hi Andy! Wow! You play guitar! That’s awesome! With regard to your feeling fatigued and lethargic, my advice is usually to try some light exercise (such as walking, outdoors if possible, as the fresh air is far better for you in oxygenating your blood, than anything you can do indoors on a treadmill).

I know it’s difficult. I’m stage 3 / 4 myself, and I get exhausted pretty easily as well. I try my best to always keep myself well hydrated (that’s important for those of us with CKD), and I try to walk for about 30 - 40 minutes, once or twice a day. I find this helps a little. Also, I try to follow a proper CKD diet (low potassium, phosphorus and sodium). Not always 100% successful, but I try! Lol!

I also notice, that I feel more exhausted and without energy when I’ve eaten foods that are somewhat higher in potassium. And I often wonder if this is because excess potassium may be slowing my heart rate down. Not really sure. I suppose that would be a good question to ask my PCP, huh? Lol!

I hope I’ve been able to help you a little. I would also suggest speaking to your doctor about this. You may just be deficient in some minerals like iron, B vitamins, vitamin D and such. I wish you all my best, Andy! Do take good care of yourself, and please keep us posted on how things come along. God bless. 🙏😊👍

[Dixidude39]

Good advice (fresh air break). Also, on the bright side, I'm 80, CKD4. Cancerous kidney removed in 2016. 50 years ago I no doubt would not be on earth at age 80. Let's hope a mechanical kidney with all the capabilities of a human transplant will someday be reality.

[Irelandy in reply to Dixidude39]

Hi Dixidude, Thanks for your reply to my post. I am 66 and would like just to see the 3 score and 10. But like you I am hoping that artificial kidneys will be available soon, that way we could get over the rejection problem and associated meds for life situation. I read some promising progress reports recently, take care and thanks again,

Good luck, Andy

[Smiles4u]

So I'm not the only one tired all of the time??!! I'm stage 4 , on the tightrope to 5.😬 There is days when all I do is sleep. Do you ever feel like you are sleeping life away?? I do. I eat & go into food comas. Which I hate. Have u found anything that helps? Fruit picks me up but then I crash. Protein is limited. A good book helps to keep me occupied & not missing my once super active life. I try to walk everyday.

[horsie63]

I used to do ultramarathons of 50k but now just walking 10 min wears me out. I have an eGFR of 22 but I have anemia not iron related.