What is going to happen? : Hi there. I... - Kidney Disease

Kidney Disease

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What is going to happen?

Yup85 profile image
25 Replies

Hi there.

I am 37 years old. I only have one kidney and 3 months ago I was diagnosed with kidney disease. My creatine is 2.18 and my GFR is 34. I understand I'm in stage 3b.

I have quite a few question and don't understand the full impact of this.

I changed my life style roughly 2 months ago and not eating salt, only 41g of protein a day. Eating healthy.

But I do smoke and I aam not going to the gym, but that will change soon!

How long will it take to get to stage 4?

How long will i live?

If I do a transplant, how many years ill live after?

Thanks for any response

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Yup85 profile image
Yup85
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25 Replies
Whitetail66 profile image
Whitetail66

Hello- Sorry to hear about your newly diagnosed situation. There is a man that has a website and YouTube channel called Dadvice TV. He has a great back story, and a lot of videos/information to digest. It’s great that you’re eating healthy now, and are watching your sodium. Do you have high blood pressure? I’m in the same boat, 3b with a gfr of 36. There really isn’t a definitive answer as to how long it will take to get to stage 4. Some people live at stage 3 for 20 years, while others don’t. Quitting smoking will be a huge benefit! I smoked for twenty + years, and quit before I was diagnosed. I NEVER thought that I would be able to quit cold turkey, but I did. That is the most successful way to quit and never smoke again, according to experts. It’s been 12 years, so I have to agree with them. The first 72 hours is the physical withdrawal, but after that, it’s all mental. Your body absolutely needs salt, but maybe you mean that you’re not adding salt to your food? Diet can be very confusing, but my nephrologist told me that I’m not restricted on things like potassium, as my levels are within normal ranges. as far as the transplant question and how long you will live, I have no answer. I’ve never researched transplants.

userotc profile image
userotc

No, your question should be "how long will it take to reach stage 3a then potentially stage 2...". Be positive!. My 67 y/o mum also had a kidney removed >5y ago with a post-nephrectomy eGFR of 36 which her nephro said he was happy with if she could maintain it.

By following a healthier diet and lifestyle, her eGFR now seems stable at ~60 (pre-nephrectoy fig) after peaking at 76 once. No credit to nephro who just states "keep doing what you're doing" in annual consultations! We are focused on improving her increasing proteinuria but never consider stage 4, dialysis, transplant or mortality.

Yup85 profile image
Yup85 in reply to userotc

I thought it was impossible to revert kidney damage once you hit stage 3? I'm glad your Mom, is doing better!

userotc profile image
userotc in reply to Yup85

I prefer the word "manage" to "revert" but, whatever it is, it's certainly an improvement thanks to natural treatment/management 🤞🤞

S_dillow profile image
S_dillow

firstly stay off most internet sites theyll only scare you.i cut out salt from my diet too and you can go for years maybe even decades between 3 ansd 4.i believe the rest is up to a higher power out there..

Yup85 profile image
Yup85 in reply to S_dillow

Yeah. Like info like this got my really panicking.

Information of mortality
rabbit01 profile image
rabbit01

nobody can answer those questions. They were the same ones many of us have had. Do just try and keep yourself as healthy as you can. Certainly giving up smoking will be a great thing to do. I used the e cigarettes to help me stop smoking and that actually worked for me.

Yup85 profile image
Yup85 in reply to rabbit01

So how can you mentally cope with the unknown? I'm afraid it will eat me up alive, because I'm constantly thinking about it. I feel I only have a few years to live.

rabbit01 profile image
rabbit01 in reply to Yup85

to be honest I felt like that every day since being diagnosed. Every blood test showed a fall in my kidney function. In fact things didn't improve mentally till I started dialysis. Now everything is stable at least.

S_dillow profile image
S_dillow

i take it one day at a time.ive learned to enjoy sunrisses,sunsets,rthe beauty around me.i stopped worryiñg and just live.its not up to you a doctor or an internet search on how long you got anyhow.just live.

Turtlepad513 profile image
Turtlepad513

i’m 34, and was diagnosed about 12 years ago around stage 3b. I’m now at stage 4. It took me probably 10 years to get there. It can range from 2 years to decades. But I have found not drinking, not smoking, exercising regularly, and cutting down on sodium intake helped slow my progression.

Your questions are very similar to what we all go through. It changes you and your identity as a person. I’m now on the transplant waitlist. I wish there were answers to your questions.

Yup85 profile image
Yup85 in reply to Turtlepad513

Thanks for sharing. So I guess we all have these same questions and we don't have really any answer for them. Yeah, this totally changes everything.

lilliput profile image
lilliput in reply to Yup85

I'm so sorry. Chances are that, if push comes to shove OP you both, being young would be a priority on a transplant list.

Really admire you Turtlepad for your positivity.

Hang on in there OP, and take inspiration from the turtle. Stay as well as you can.

From what I've read you can slow down but not reverse kidney disease.

I'm 62 with rubbish kidneys but if I could I'd donate to either of you.

We need to raise awareness of organ donation. Especiallywhen it comes to young healthy people. Who fortunately think they are invincible and never think about early death saving another's life.

You both need to stay well as possible in order to be well enough for surgery and a transplant if needed.

OP dialysis will give you time to wait if needed.

Sparker88 profile image
Sparker88

I’m sorry you’re going through this. I was diagnosed last year at 33. It also depends on the type of kidney disease. Do you know what type you have?

Yup85 profile image
Yup85 in reply to Sparker88

There are different types? What are the types exactly?

Sparker88 profile image
Sparker88 in reply to Yup85

there’s many. Here’s some kidneyfund.org/all-about-ki...

Diabetic cause kidney disease is the most common but I have IgA Nephropathy- an autoimmune kidney disease

Yup85 profile image
Yup85 in reply to Sparker88

Ah ok. Thanks for the link.

I have a chronic kidney disease. So the first one in the list.

Sparker88 profile image
Sparker88 in reply to Yup85

They’re actually all chronic kidney disease. CKD is the category they all fall into. But there are different types of CKD. If your nephrologist has told you your type you should definitely ask. Good luck!

wheezoids21 profile image
wheezoids21

good morning. It took me 10 years to get from stage 3 to stage 4. Never been a huge drinker and work outside so always exercising. I have however smoked the whole time. It seems to dip 10 percent every decade. Now at about gfr 20 ish. My doctor has no answers with regard to how long this will last, but im hoping it will follow its usual trend. The best advice i think is to stay off google search and live your best life, armed with the knowledge that life is short regardless of whether you have a chronic disease or not.

RhenDutchess123 profile image
RhenDutchess123

it took me 23 years to go from 3a to Stage 5 on Dialysis...and I spent 15 years of the 23 denying that I even had Kidney Disease. Just do your best ...,try to follow a basic Kidney Friendly diet... and enjoy your life

Tolmezzo profile image
Tolmezzo

First of all stop smoking now! You need to understand which is cause of your kidney problem. You did not mention it. CKD is not always irreversible. Most depend from underlying cause. Don't panic and don't desperate. If not yet done find a good nephrologist. There's lot you can do before start guessing how long you will leave.👍

KidneyCoach profile image
KidneyCoachNKF Ambassador

please check out kidneyschool.org for some great information. I was diagnosed with CKD (polycystic kidney disease) in 1980 at age 21. I went to university, married, had children, traveled etc. I went on dialysis in 2002. So 22 years before dialysis. I am in my 21st year of dialysis. I've seen children grow up, marry, serve in military, welcomed 10 grandchildren into the world and my life. Ive traveled and been a staunch advocate for kidney patients, serving as Ambassador and more on many committees, organizations etc.

is it easy? Heck no. Is it doable? Of course. The point is I've lived and continue to enjoy my interests, hobbies and more. You can grab the world like a lover and live it with passion. It's all a matter of attitude and choice.

You can do this.

Blessings

Yup85 profile image
Yup85 in reply to KidneyCoach

Thank you so much for this post.

Gerrysan profile image
Gerrysan

Hello, it is a hard one to get info like that. I am 61 CKDstage 4 eGFR 25 now down to 22 with Hi blood pressure and Hyperthroidism diagnosed Aug 29th. Since then my Thyroid is back to normal and I am off BP tablets since a couple of days. I am using a Macrobiotic protocall.

Unfourtunatley my potassium is going thru the roof I have done an overnight in hospital.

I though it was all going well as the other 2 conditions were improving......We will see.

You have caught your CKD earlier so you get a good chance to manage. All the best.

G

RoxanneKidney profile image
RoxanneKidney

if you stop smoking you can probably save yourself, but you already know that. Chose life.

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