Newly diagnosed with CKD stage 3 - at 33 years old

Sorry to hear the news..

Good good news is that you are young and healthy and you are able to replace a kidney. My mom has stage 5 renal failure, diabetic with some heart failure and is 78 years old. She's too old to have a kidney replacement.

Try not to read the downside to this illness. Focus on you and what you need to do to get better. You will get better.

There are so many things that you can do to rejuvenate your kidneys. Nutrition is the most important thing.

It can be complicated but it can be done. Go to holistic kidney on Facebook there is a lot of information on holistic healing. Nepros tea is really good. My prayers will go out to you.

Breathe!

I'm not young but I understand the fear and anxiety. Your gfr may remain the same for years and has to get much worse before anything needs to be done other than monitoring. There are many options for one as young as you so please fear not. Stress and anxiety will do more harm than you realize. Invest in some kidney healthy cookbooks, get rest and exercise and listen to your doctors. Enjoy your life and your children! I'm sure you'll be around to dance at their weddings. Above all, DON'T WORRY. Good luck with your journey. You are not alone.

I wish I fitted your age spec better, but I am 78!  I had a somewhat similar experience though, with falling eGFR.  I too had been an Ibuprofen user, unaware of the hazards, but seen regularly by Consultants for Cardiac and UT problems.  When  egFr went below 50% I still felt fine and took no special care of my kidneys.  However I had some bowel pain, which was checked by an ultra scan, and the radiologist noticed a lump on my right kidney.  To cut the story short, my kidney had to go, eGFR fell in a chunk to the 20s, but as I got over the op it has risen to the low 30s.  I now refuse meds that are bad for kidneys, take care with what I eat, drink lots, exercise, - and I feel fine!  So try not to think that kidney problems will be a stopper for enjoying life, but take it as a wake up call to look after the function that you have!

The very best of luck, and enjoy your children!

KenR

Hi,

Its all overwhelming I get it I too have two children and was on dialysis by 37 I didn't see it as being stuck on it I saw it as my friend and part of my life after all it was keeping me alive, I had my transplant last year at 39 that a friend kindly gave me.  I was diagnosed with kidney issues at 13 and finally had a diagnosis of Allports.  All through my life until 37 I had been stage 3 I lived a normal life, even on dialysis with 6% GFR and creatinine of over 600 I worked full time, exercised three times a week and ran our family business.  So two things to keep in mind, don't panic unless you have to, you can stage at stage 3 and never progress, secondly if you do have a progressive disease what on earth makes you think your life is over and you are going to die (I kind of get why you say this btw) but I have been through it all and I am still here and intend to be for a long time yet.  Look at all the things you have over come, postnatal depression, a parent to two toddlers come on lovely you can do this too.  You are stronger than you think, see what happens after your next bloods, now you are on the radar you will be investigated.  Good luck xx   

Lvl,

I wasn't diagnosed as a young person. But many who participate in this forum were diagnosed at young ages. I'm sure they will respond to your post.

I just wanted to encourage you to take a deep breath and focus on anything positive. Right now you're doing what you need to do--getting medical care. The first step is to move through the testing so your nephrologist can put together an appropriate treatment plan for you.

In the meantime you have a wonderful family and very likely many good friends. Focus on them. When your test results are back you'll meet with your nephrologist. Then you'll follow his or her treatment plan🐶

My father also had chronic kidney disease. He lived into his mid 60s. He worked as a music teacher and raised three children. He was ultimately placed on hemodialysis. As one of his children I can assure you that I would not have traded him for a father without chronic kidney disease. He was such a major positive influence for my siblings and me. So, whatever you learn from your testing, please don't doubt your ability to positively influence your children.  Life with chronic kidney disease does go on and my father would certainly have said it was a great life. 

Marj

Hi Lvl so sorry to hear of your ckd. It certainly sounds like you're giving yourself a good beating! You can't do that. You sound like a devoted mother and your kids need you to be strong. I faced the exact prospect as you did and now I receive dialysis 3 times a week for 4 hours. Initially I was exhausted but only now after a year do I feel the benefit. The process in preparing for dialysis SOUNDS daunting but I'm fact is done with minimal fuss. It simply becomes a way of life. Having said all this I take it you do know your eGFR can stay static for a long long time and this does not necessarily spell dialysis for everyone.

As for your concerns over cancers etc I understand it is standard practice for these to be screened in a full blood test if a patient presents with nausea or any other ailment which persists. In Scotland anyway.

I'll look out for your results if you post them and wish you the best of luck and health

Stephen

Good news - bloods done today show egfr has jumped to >60 and creatinine down to 93. Relieved doesn't even begin to cover it. Feeling much less apprehensive about the scan tomorrow now. Thanks for all your positive thoughts, they have really helped, and good wishes to you all. Will update about the scan tomorrow. Night night x

Do you do any type of exercise?  Are you a relatively active person?  Do you know how fast your eGFR dropped?  I was in a somewhat similar position as you just a few months ago.  My kidney eGFR went from 75 to 45 in less than a year.  I had no history of diabetes or high blood pressure.  Also no family history of kidney problems.  I was a regular gym goer (nothing over the edge, but I would consistently go to the gym 4-5 times a week).  My nephrologist believed it was rhabdomyolysis even though I had ZERO symptoms.  He told me to stop any strenuous activity for a whole month - meaning no weightlifting, no cardio, no basketball, nothing... I redid my blood test last week and my eGFR went back up to 81.  Also, I did an ultrasound and they found my kidneys to be perfectly fine.  Basically, I was experiencing a very mild rhabdomyolysis which causes the muscle to break down which releases creatinine in the body.  This results in a lower eGFR score.  I am not sure if this is your case, but I hope your blood test results were affected by something like this which is only temporary.  

Hi I know exactly what your going through I am older though at 45, I got diagnosed about two weeks ago having a gfr of 33 although another reading was 36, though the doc said don't read too much into it. Similarly I feel I have done something stupid, two years ago I had high blook pressure and was told I needed to take meds I decided to takle it naturally and thought nothing of it now returned as I had urine issues now find out I have ckd, but what I did not know was my gfr was 60 back then, very angry as the doctor did not mention any of those numbers to me nor what it meant. Anyway I'm here now and am terrified, confused as to the best way forward and feel know one really has any clue what I am going through. I don't want to accept that I can't turn this around and just wait for it to get worse. I think it would be great if we could get some kind of support group together to talk over our issues with those who understand and swap ideas on what we might do. Anyway let me know if you would be interested, it would be a massive help to meet just to talk it through with others who are in the same position right now.