How long will I live.

I already have several health issues. Now Ive been diagnosed with CKD and blood tests show I am stage G3b. I want to know what my life expectancy is. I am 66 year old female. I just want the cold hard facts! I can handle it. Don't want to be fobbed off. Thats worse!!

[Bassetmommer]

Let see, you could get hit by a bus tomorrow. There is no crystal ball here. Being diagnosed with CKD is not a death sentence. Of all the diseases out there, this is one you have some control in changing the outcome. It is frightening at first. Become educated either by going on line and finding out information about stage 3b or...and much better, is talk to your doctor. We do not know your medical history.

Once you understand that diet and a healthy, worry less lifestyle will help you, you will be in control. Many of us here are stage 4 and some 5 and we live normal lives. We change our diet and get rid of bad habits and are doing ok. So ask your doctor for a renal dietician referral. Learn what foods are good for kidney health and particularly, what is good for your situation.

The cold hard facts are this: You can slow the progression of CKD by learning about healthy foods, knowing if all the medications you are on are good for the kidneys, and learning about what other diseases impact the kidneys and what to about it. Then, enjoy your life.

[Hidden in reply to Bassetmommer]

Well thats told me!! But I wanted a straight answer. Thanks for taking the trouble to reply. Im trying to research as much as I can online, but you get some very different answers. Maybe I phrased my question wrongly. I guess what I would like to know is the general statistics, my life is quite restricted with lung disease and I am quite justifiably concerned about my heart, so it's all happening at once. I appreciate there are many people worse off than me. I wish you all the best.

[Bassetmommer in reply to Hidden]

The concern is natural. But, and not bein snarky, you really need to talk to your health care team. You have other conditions that impact your health and without being a medical provider, there is no way we can tell you your outcome for your life.

Things like fluids and food may be impacted by your other issues. So that is why you need to speak to a dietician. What works for me may not work or be best for you.

But the bottom line is that CKD is not curable, but you certainly can live with it.

[Dovaston in reply to Bassetmommer]

Great advice 😊

[orangecity41]

Our forum can help you with support and information. None of us are able to give medical advice. With support and information one can be proactive for CKD.

[BarronS]

Whats your rate of GFR decline? What is your current GFR? What was it 2 years ago? What was it 5 years ago? What other issues are you having?

Rate of decline in GFR is going to be a very important indicator.

[Impregilo in reply to BarronS]

Hi BarronS,

I was intrigued by your query as I was also interested in the rate of decline of eGFR.

Hence I kept some records since 2013.

I had Nephrectomy in 2005 for Renal cell cancer and henceforth my eGFR had been compromised.

I was monitored by a Nephrologist for the next 5 years for my other kidney.

Previously I had not kept records but since 2013 I had kept my records as follows:

2013 eGFR : 45

2015 eGFR: 47

2017 eGFR: 45

2018 eGFR: 41

2020 eGFR 37

My Nephrologist is rather sanguine about results and had not suggested anything else apart from monitoring K levels and to follow Renal diet.

I have been eating plant based diet now about 5 years as suggested by a Renal dietitian.

I hope this helps.

Regards

[BarronS in reply to Impregilo]

Looks like your average rate of eGFR decline is around 1.0-1.3 point per year. Which would put you in the "mild-moderate" stage of decline, based on the studies I have seen. This is good news since based on the readings of the last 7 years, you won't be on dialysis for another 17-20 years. Tons of research is being put into CKD, so I wouldn't be too worried about not being around for at least another 15+ years. The only way that I would be worried is if your eGFR rate of decline was >3 points per year.

[rabbit01]

There is no way that any of us can predict that. We would have to know every aspect of your medical conditions and on top of that be medical experts which as far as I know none of us are. What I will say is you will certainly live longer if you follow a kidney friendly diet, stop smoking if you smoke, lose weight if a bit on the large side and exercise more. I was diagnosed at stage 4 six years ago and I am still here ! All the best.

[Bet117]

Hi Hidden,

Welcome! To begin, you are not alone as you are among friends here.

Each has our own and diverse health issues and we come together to support each other. Our purpose.

Your feelings of fright are absolutely normal as when some one hears kidney issues, it is shocking.

First of all, until your doctor tells you that you are critical, dying etc. don't go there as it is not valid and non productive.

Some of the wonderful folks in the community have given you great thoughts and perspectives, but the bottom line it to set up a medical team headed by a good PCP and specialists who will listen, diagnose, answer questions/ explain in basic terms , offer suggestions, as well as communicate with both you and each other to provide care for each condition that you have.

Although there is no cure for kidney issues; they can be managed by diet, medication and exercise. Each person is different and labs vary, so watching labs and putting together a diet and plan that right and best for you is important. Remember that this is a process and takes some time to get your plan in order.

Your doctor is your first line of communication and knows you best. I would make an appointment with him/ her; print out your labs and check off labs which flag high or low and ask him/ her to explain them to you. If you have a family member who can accompany you to the visit, buy a notebook and let them scribe what is said; even your vitals on that day. This will allow you to better focus on the discussion. Your notes will be right there as a reference when you leave the office, serve as a baseline and also as a place to review before your next appointment.

I always write prior lab results on the new ones to see patterns etc.

So ask direct questions.

You may want to ask for a referral to a dietician who will look at your labs and make food suggestions and brands to buy which are both nutritious and appetizing. I saw a dietician as well as brought a brief list of foods and water consumption to both my nephrologist and PCP; both of which always share any new ideas that they come up with.

None of us can give you a life timeline, although you feel like you are in the pits, but you are not.

Only your doctor knows you best. Call!

Reach out to us and let us know how you are doing; I promise one of us will always reach back.

Take a breath, let loved ones support you and think positively; we will find a solution that I can live with.

Bet

[Hidden]

I am 84 with ADPKD gfr 20, emphysema, bovine aortic heart valve, 4 stents, some minor stuff and I may not wake up tomorrow or outlive the devil himself. Meanwhile there is yard work and dishes to be done. Remember yesterday, live for today and plan for tomorrow (just in case). Check with me on the other side ( if there is one).🤔

[BarronS in reply to Hidden]

I wish you pain free days and happiness.

[purple-1974]

Hi Hidden

I am 46 yrs old, I was shocked like you are experiencing when I was told in 2008 that I was at stage 3 b. With massive changes to my diet through a dietician, I’ve been able to sustain a reasonable level of gfr. I am now at stage 4. As lots of lovely people on here have already said it isn’t a life sentence, but at the same time not curable. I also have asthma which since my CKD diagnoses has improved. I live my life to the absolute best, but with some small adaptations.

[HealthBuddyMelissa]

I don't think anyone can give you a specific answer. What has your doctor told you? I would say you will live the longest, unless there is an unforeseen disaster, when you learn ways to control your chronic illnesses. There are tons of options available to help you understand and manage your chronic illnesses, such as a Health Coach. They don't replace your doctor but work with you to set goals and manage an illness according to what your doctor has told you.

[medway-lady]

Well I'm 68 stage 4 for last 2'ish years and because of a pending court case have a professional opinion on life expectancy best guess is there may be a 2% chance of dying in next 2 years as opposed to 14% without CKD. I crashed landed to 8% and have no disease this was down to a medical accident. To be honest have missed a holiday this year so booked for China next year. I hope you understand I'm optimistic and not afraid of the truth but this guys opinion is really important so I believe him. Its taken that time to go from 8 to 24% and I have other medical issues too but do believe being positive helps.

[Julesboz]

Hi, I’ve been at stage 3 for over ten years and, through minor changes in my diet, I’ve been able to improve my GFR, so rather than this being a death sentence, I’ve made improvements to my life as a result. Everyone is different and, as many people have said, no-one can give you an easy answer. It very much depends on the cause of your CKD, your lifestyle, other health factors and whether you choose to be pro-active. I certainly don’t intend to die of kidney failure any time soon!

[Mgt8]

Hi,

I can relate to what you are saying as we all wonder at some time or other, how long we are going to live. I too, often like to know all the facts so I can assess where I am and can consider what I will do in the future.

However, over the past few years as my kidney disease has progressed, I find that discussing the subject with other kidney patients has been of equal if not greater importance to me.

I do hope you will feel welcome on this forum and will stay and gain much from sharing experiences with the group.

As for how long we will live; I look at it this way:

I have had some great experiences so far in my life. My kidneys finally failed when I was 52. Since then, by taking the best medical advice and treatment, talking with fellow CKDers and changing a few of my day to day health routines, I have lived so far, for another great 8 years.....

And I fully intend to continue doing so for many years to come.....

There is a wealth of knowledge on this forum. I do hope you stay to join the conversations....

[RickHow]

You have received a lot of replies. But I think I can add something. Hopefully you will see it. Without a lot of bs about how I arrived at my current condition I'll just state where I am at. I have stage 3b CKD. I have only one kidney. I have kidney cancer that has spread to my bones (from the removed kidney) and am at stage 4 cancer. There are no chemotherapy treatments for this type of cancer. I am 70. I will die from either the CKD or the Cancer. When presented with this condition I of course thought the same thing as you. When will I die. The thought consumed me. I asked my kidney doctor, when? She just basically gave me a lot of the usual words that so many have given you. In other words, she had no clue. I asked my cancer doctor. At least she was frank. She said there is no magic clock. It simply varies widely in each person. But it will be sooner rather than later. This started in 2017 for CKD and 2019 for the kidney cancer. I am still here. Now, because I have been tested (blood and urine) over this time period, at my last appointment my new kidney doctor gave me a more practical approach. She measured my decline. She looked at my 3gfr level over the time period since mid 2017. She calculated my decline was about 2% a year. She estimated that at a decline rate of 2.5% I would enter stage 4 in about 2.5, but more likely 3 years. I will stay in that stage until I reach mid stage 4 about 2 more years. At that time I would get dialysis training and be put on a kidney transplant list (which I will decline. It makes no sense to me for a then mid 70 year old man with cancer to "rob" another person of their ability to get a kidney. This all assumes the kidney cancer does not take my life even sooner.

To your question. The answer is easy to give. Honest. Factual. The answer is who knows.

But after you have been in this situation for some time, can measure your decline, you can get a better estimate. But keep in mind only a low percentage of people at stage 3 ultimately die from it. But so much depends on age, sex, lifestyle, reason you have CKD.

For example if your CKD was caused by high blood pressure. You can then learn to control the pressure. The decline in your kidney will be not be aggressive.

I too spend day after day wondering and worrying when it will take me. How will it take me. Will it be quick? Slow? Painful? Will I be self sufficient until the end. And over time I realized what a waste. If I'm going to die from my illnesses (which in my case I will) should I spend every moment of every day wasting it on worry. Or should I try to just live normally as possible (considering all the doctors appointments, blood test, scans, etc.). I do latter. Of course some days are taken by my worry. But in general the thoughts become fleeting.

[Bee28]

Hi, I am 70 years, I have been stage 3b for 20 years , I follow a plant based diet and drink plenty of water, sometimes I go off track. I have several other health issues but enjoy life and take a day at a time. I hope this helps. I get my bloods done 6 monthly and my last GFR was 41.

Worrying does not help and I think I am currently in a good place.

[citronc3]

My cousin just died 3 weeks ago . She was 85 and had end stage kidney disease for over 10 years . Had only 1 kidney. Despite having Dialysis and had other health issues she lived life to the full. Life expectancy language is only used for the terminally I'll people. I too intend to give the remainder of my life a good go as I have Stage 3 CKD and hope not not be run over by a bus. As my friend always used to say ' live for ze moment '