Malachi: Same question, stage 4 how long do... - Kidney Disease

Kidney Disease

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Malachi

Avenger profile image
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Same question, stage 4 how long do you live.

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Avenger profile image
Avenger
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21 Replies
Bassetmommer profile image
BassetmommerNKF Ambassador

Hi Avenger,

Since I am stage 4, I hope forever...... not really, scary thought to live forever. People can retain their kidney function in many cases for a very, very long time. I maintained stage 3 for almost 10 years, and have been steady at stage four for over a year. I don't do labs until next month. I eat a renal diet and take care of myself as best as I can.

Stage four is not the end and actually, stage five is not either. Depending on how well you can function with a low GFR, many people keep off dialysis for some time. It is all dependent on the individual.

Dialysis is not the end either. It is just a different lifestyle. Many people have been on dialysis for twenty or more years. There are so many options now for dialysis. And then there is transplant.

So, the short answer to question.... is all depends on the person. Just like every other thing in life. You could get hit by a bus.......

in reply to Bassetmommer

To further the previous post, it seems to me that you may have a fatalistic view of CKD and eventually ESRD. For the reasons already mentioned don't look at it as the end of your life. It is actually the birth of your new life if you take it seriously. Meet with a renal dietitian, and show your lab results and help develop a kidney-friendly meal plan. Work with all of the physicians on your Care Team and develop an exercise regimen that will work for you day in and day out, rain or shine, snow or freezing temps. Watch your medications, including dosages.

It's been 22 months since I've known I had CKD. When I went back and collected copies of all of my lab results and find out that I had CKD for a full two years before I was ever told I had it. Keep that in mind and become proactive and learn everything you can and be your own advocate for your health.

I hope to never need dialysis but that hasn't stopped me from looking at all of the modalities for that now, while I can work to slow down the progression and delay the need for dailysis, hopefully forever. I enjoy traveling around the country in my RV and I have found that I can do HHD while traveling. So, should that day ever come, I can still maintain my current lifestyle and still dialyze when I travel. I may have CKD but it doesn't have me. I control my life and my health choices.

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to

I hope you mean Avenger has a fatalistic view.

in reply to Bassetmommer

Sorry, Bassetmommer, apparently I clicked on the wrong reply area. It was indeed meant for Avenger.

Avenger profile image
Avenger in reply to Bassetmommer

Superhero, fighter meaning.

KidneyCoach profile image
KidneyCoachNKF Ambassador in reply to Bassetmommer

Adhering to a renal diet at CKD 3 may not be the best. Renal diets typically are for stage 5 and generally are higher protein. A lower protein renal type diet is good to reduce the burden on kidneys. Once in stage 5 and on dialysis, a true renal diet with higher protein is recommended. Dialysis procedures remove protein. Its important to replace.

As for how long do you survive, it varies as much as survival rates for cancer or any other chronic disease. The mortality rate for those on dialysis has a fairly high rate with 50+% within 1 to 5 years. I have been on dialysis for 17 years with CKD 40 years. None of us have expiration date. Live your life. Do the things that bring you joy or passion. Pursue your hobbies, travel, learn to play an instrument etc. There is no point in sitting around waiting for the end. Live, laugh, love. Blessings

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to KidneyCoach

Hi Kidney Coach,

I disagree about your statement that renal diets. A renal diet is one that is tailored to the patient with CKD. There are dietary guidelines for all stages of CKD now. The use of renal used to be for only late stage or dialysis, but now renal diets are being prescribed for stage 3 and 4. And yes, a renal diet for dialysis is VERY different than one for stage 3 or 4.

my.clevelandclinic.org/heal...

nephcure.org/livingwithkidn...

in reply to Bassetmommer

Bassetmommer, this is directed to you. I completely agree with you on this. Slowing the progression of CKD by a kidney-friendly meal plan based on your individual lab values is a cornerstone of saving yourself from dialysis for as long as possible.

Even folks at Stage 3 with similar GFR numbers could have different meal plans based on their labs.

orangecity41 profile image
orangecity41NKF Ambassador in reply to

Agree. My renal diet is based on my lab values. It was also modified when potassium got out of range.

KidneyCoach profile image
KidneyCoachNKF Ambassador in reply to Bassetmommer

Oh dear I didn't clarify my meaning for "renal diet". I am incorrect. My apologies. Thank you for catching this. In my defense Having an abscessed tooth removed and insomnia had me up until wee hours then responding just 2 hours later as I was getting ready to drive an hour for an hour for clinic. I will not respond in the future after being awake. Blessings

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to KidneyCoach

Oh Kidney Coach, what a time you have had. No worries. I just want to make sure people did not think that a renal diet was not for early stages. This is all new territory. And you are actually correct that in the past, renal diet was for dialysis. I truly hope your tooth is better and you got some sleep. Keep posting you sound and good advice.

orangecity41 profile image
orangecity41NKF Ambassador in reply to Bassetmommer

THanks for the encouragement.

Julesboz profile image
Julesboz

Hi Avenger, I agree with the others. You can lead a completely full life with CKD, depending on the cause and how you manage it. I’ve been at stage 3 for at least 10 years now and have managed to improve my kidney function through diet changes. I certainly don’t intend to die from it! Bear in mind that the vast majority of CKD sufferers never get the end stages. I found an NHS (UK health authority) webpage some time ago that gave stats, but I can’t find it now sorry. Anyway from memory it showed that only about 5% of people get to end stages requiring dialysis/transplant. So that means that a huge 95% don’t get there! Keep positive, eat a kidney friendly diet and follow your nephrologist’/doctors’ advice and hopefully you should live a normal life.

WYOAnne profile image
WYOAnneNKF Ambassador

As I am one that has been diagnosed with CKD, ESRD, I was on dialysis and have had a kidney transplant....I plan to live a very long time. I will be 20 years post transplant this October..and it is still not the end by any means. I have lots of traveling yet to do!

Stage 4 is not a death sentence as long as you take care of yourself - keep your blood pressure under control, drink plenty of water, take all prescribed medications, do moderate exercise and eat a healthy renal diet.

Be proactive as Mr Kidney posted and learn all you can about your kidney disease. The more you learn the less scary all of this becomes. The National Kidney Foundation has lots of info for you on their website. You need to also be your own advocate and stand up for yourself. Get your doctors to also tell you what is going on with your kidneys and ask questions. All of this helps you get a better understanding of this kidney journey you are on.

RhenDutchess123 profile image
RhenDutchess123

I was Stage 3 for 18 years and have just recently went to Stage 4...not yet on Dialysis and other than feeling tired at times and not having the energy to do things I once could...life is actually pretty normal...I know that everyone will eventually die , even those without Kidney Disease...it may sound strange, but I think knowing I have Kidney Disease adds definition to my Life...to know that each day I am here is a Gift...to be kinder and more appreciative of those who I love and who love me....We can all get busy living...or get busy dying......not today....

orangecity41 profile image
orangecity41NKF Ambassador in reply to RhenDutchess123

Agree with what you say completely. I am age 78 and CKD does add definition to my life also.

RhenDutchess123 profile image
RhenDutchess123 in reply to orangecity41

that is wonderful...just keep clicking on...getting a dx of Kidney Disease is devastating...but in reality there are so many worse things or diseases we can get...

orangecity41 profile image
orangecity41NKF Ambassador in reply to RhenDutchess123

That is for sure RhwnSutchess123. Be thankful for the health we have

Philipjm profile image
Philipjm

Hi,

Ckd and ESRF is an awful disease but can be managed and still have a great quality of life. I am 72 and Amon nocturnal home heamo dialysis, every other evening for 7.5 hrs while I sleep. I get almost as much filtration as I would with a transplant. So I do-now have choices, enjoy my life on dialysis, still work full time, have a large garden to manage, out on my cycle and lots of walking. Recently travelling a little, my dialysis machine is transportable, planning a trip to Oz this year to see my new granddaughter . If I eventually set a transplant I will have to take very strong drugs for the rest of my life with possible side effects, a transplant is not a cure.

I have taken control of my illness and it fits my lifestyle.

Try to be positive and you will overcome these early problems with your family’s support. My wife has been wonderful throughout this nasty illness, friends also hel if ever needed

Avenger profile image
Avenger in reply to Philipjm

Nice to meet you, very encouraging! Thank you. Sounds not to bad. My husband is aa nurse so that helps a lot. My strokes made me very disfunctional.

Have a nice day!!😊

Avenger profile image
Avenger

Anyone have good diet advice or things that you enjoy eating a lot.