Help and advice

[Calm2]

Hi everyone, need some advice and reassurance if possible after being told I have CKD. A new GP took over at my surgery and as he was about to prescribe me some tablets he happened to say “Oh you can’t have them because of your CKD”. ????? First I had heard of it. Anyway I met with him last week and he started off happy that I was no longer pre diabetic and my cholesterol had gone down…. But my kidney blood test wasn’t good. He drew a straight line to explain my results and after a blood test several months ago the line started to go down and after my most recent test the line went right down? Then he said he was sending me for an ultrasound scan to see what the problem could be. He mentioned the urethra and a possibility of the tubes being damaged? I know I’m not offering any concrete results here but suffering from anxiety all I think is A death sentence! I should add I had a mild HA 5 years ago and keep reading how the two are connected? Anything you could say would be greatly appreciated although I know you have little to go on in my post. Thanks all 😀 He also said my meds were not to blame but I have read to the contrary?

[Bingo88]

Good morning Calm2. Please try not to worry too much at this stage. I know it comes as a shock to be told. But did the doctor mention an Egfr number to you. The lower your Egfr the worse your kidney disease is. Then depending on your health you will have the option hopefully of kidney transplant or Dialysis. The main thing to help yourself is a plant based diet. Keep your weight down and Exercise if at all possible. If you are on Facebook there's a very helpful friendly group run by Andrea called. Chronic kidney disease uk. You will get plenty of information and support there. Good luck. Brian

[Blackcat122]

Hi Calm2We're both the same age, living in the UK

I was diagnosed stage 3a/3b nearly 2 years ago

I follow a low salt diet but no referrals to consultants yet

You need to either access your test results yourself, or ring the surgery to speak to your gp to find out which stage of ckd you are.

This will make a big difference to how to approach it.

Ask also what is your egfr.

Hope this helps

Susan

[barbara55109]

Welcome. I think most of us weren't told when our lab tests first showed CKD. The current crop of Dr.s were trained that since there is no "treatment" until you reach the stage for dialysis or transplant, that it's better not to worry people. This is a really bad practice. There are so many things we can do to delay the progression of CKD, depending on the cause. Mine is primarily caused by 30 years of dehydration due to losing my colon and having a high output ileostomy. Getting on max dose anti-diarrheal medication, cutting down on caffeine and drinking non stop were key for me. I'm also T2 diabetic, in control. I need to keep it in control and take Mounjaro, one of the newer, more effective T2 medications. More recent medical research supports going to a plant based diet. I personally can't because of my ileostomy. But I do avoid red meat and stick with chicken and turkey. There is a long list of other things to avoid, like contrast dyes when you get an MRI or CT scan; anti-inflammatory and other drugs that are harmful to kidneys. Generic advice tells us to limit phosphorus and potassium, but what we really need to do is "eat to your labs." My phosphorus got a little high so I'm on binders I take at meals. Because of my ileostomy and dehydration I NEED potassium. Many also emphasize low salt, but I need salt for the dehydration. We are all different, hence the need to look at your personal labs.

You don't mention what stage you are at. It's never too early or too late to try to slow down the CKD. I got down to an eGFR of 7 at one point. At my last test I was 30! Highest I've been in 5 years. Probably attributable to losing weight. I had to lose weight to get on the kidney transplant list. Luckly, my T2 medication better controls my insulin and I was able to get off insulin all together. As a result of my dietary changes, and going to the YMCA 5 nights a week, my efforts were able to actually impact my weight. It is near impossible for a postmenopausal, life long fat person on insulin to lose weight. Insulin makes people gain weight.

Lots of people here will offer you what works for them. The biggest thing is to try to discover the cause and get that under control. Make changes based on your specific needs. Get your labs checked as often as you can, mine are every 3 months. Eat to your labs. You can slow it down. Although at 66 you are also hitting the age where age-related CKD is common. It's so common that many medical reports and studies want to come up with a different eGFR score based on age. Declining kidney functioning is normal as we age and many older folks don't really have CKD, but age related issues.

[Calm2 in reply to barbara55109]

Thank you for your reply. Wow you have a lot going on. Thank you for sharing .

[whats]

Hi Calm2. I was diagnosed with CKD about 3 years ago, and it was the last straw in my endeavor to keep on the same unhealthy diet. So I gave up sugar first, which made a huge difference. Great job, no longer being pre-diabetic and lowering your cholesterol. Anyway, the point is I'm a lot healthier now, and my kidney function is consistently better. So, it all depends on what is causing your kidney function to go down. Don't take ibuprofen, go plant based if possible, drink plenty of water, let the docs figure it out. Let us know! With any luck you won't have to worry about it in future, just get some healthy kidney habits going. Of course there are people on this forum who do have more serious kidney disease, and they are doing well also, and don't seem to feel under a death sentence.