Early CKD Support

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pigeonman profile image




14 Replies

As I understand it, dialysis and transplant happen further down the eGFR scale .. at 15 or less.

At 32 you've a fair bit of function left so the option of diet to preserve what you have is something to consider if you haven't already.

Your doc talk about this with you?

What's a 'direct kidney'?

pigeonman profile image
pigeonman in reply to Skeptix


pigeonman profile image
pigeonman in reply to pigeonman

no one has told me about what you have told me. i do not know about the levels. i am on my second kidney dr. i need a list of things i need to ask. i asked for farxiga & i got it all my knowledge comes from the internet. i have never seen a ckd diet. all i know is no salt. no red meat ,no sugar ,no soft drinks ect. it appears to me their is no set rules on diet one person says 1 thing & another says something else. i'm confused. 1 says egfr is what you look at another say creatinine. i need facts not instead of bs. tell where to look please.pigeonman

jajaja profile image
jajaja in reply to pigeonman

I suggest you look for an online group who will have more time to answer your questions that our doctors do. I find the Facebook ones easiest to use. If you are on Facebook, you might try "Kidney Support: Dialysis,Transplants, Donors and Recipients".

Incidentally our GPs can be very experienced and helpful with kidney things -- we don't have to wait on an appointment with a kidney doctor.

EGFR and creatinine are different ways of looking at the same thing. If your doctor gives you both numbers then eGFR is likely to be the more useful. Transplant teams use eGFR to set their limits.

Nobody can survive on literally no salt -- we all need a little. Your GP should be able to arrange for you to see a dietitian, but it is best to remind them that you need one with kidney expertise. (A little red meat and sugary stuff can be helpful. \You need expert help to find what is right for you.)

eGFR and Creatinine are both key factors used to determine your kidney function. Renal diets depend on your individual health, medical conditions and your stage of CKD. For example, if you have diabetes and CKD, your diet should be significantly different. Read some books on kidney disease. Then look at the NKF (national kidney foundation) KDOQI Clinical Practice Guideline for Nutrition in CKD: 2020 update.If you don't understand it, ask your doctor how is applies to you. Good luck!

It is up to most renal consultant when the time is right to talk about transplant, a EGFR of under 15 is classified as end stage renal failure at some hospitals and others higher or lower but the highest level would be an EGFR of 20. You still have a lot of function left and diet and watching other blood levels such as potassium and phosphorus and sodium are really the only thing you can do right now.

We have similarities. I am in my early 70's, I am stage 4 renal cell carcinoma. I have CKD. My egfr is about 42, 43,. You are stage 3b CKD, as am I. Why in the world are you even thinking about transplant???? You, at this time are not even near needing a transplant. I would bet (but i'm not a doctor) you likely will never reach this need given you are at age 76 only at MODERATE kidney disease. Possible yes, probable no. Also at our ages we have to be a bit realistic. In the United States for example there are between 90,000 to 100,000 people on the current kidney transplant waiting list. The average time to find an eligible kidney is 3 to 5 years. In the United States there are about 20,000 transplants each year. So think of this. 100,000 waiting, 3 to 5 year wait, only 20,000 done each year (and not all of those are from the transplant list, a lot are from what you call direct donation kidneys). So you are not even eligible to get on the list yet. But even if you were, your are currently 76. If you are lucky one in 3 years you would be 79-80. A kidney transplant is not some simple operation that easily recovered from without of a lot initial medical care and moderating. It is natural to think of wanting or getting a transplant. I myself about a year ago had questions about a transplant and discussed it with my kidney doctor. That is why I know the statistics. I wanted her to be sure to NOT add me to the list (at the time I did not know about eligibility, etc.). My personal choice is while I am not THAT old, I would be mid 70's by the time I could be eligible, if not even older. And I have stage 4 cancer (which means I won't make that goal anyway). But even if I did I did not think it appropriate to be an elderly man, with cancer, and trying to take a kidney away, when on that list of 100000 people waiting the majority are far younger, healthier, have many, many years of life ahead of them, and they should take priority.

Skeptix profile image
Skeptix in reply to RickHow

That there's addressing the elephant in the room issue!

Should people in their 70's be getting kidney transplants given the lack of supply? There's this whole extending of life to the nth degree going on .. when there's a groaning planet with finite resources on the other side of the equation.

Darlenia profile image
Darlenia in reply to Skeptix

There's careful decision making regarding who gets a deceased donor kidney. A transplant team looks at the expected life span of the recipient and the condition of the donor kidney. Younger patients are generally matched to kidneys with longer viability, are in better condition, etc. On the other hand, older patients generally agree to receive kidneys with more years on them or have had exposure to Hep C, HIV, and so on. Until recently, these kidneys were passed over for everyone. For example, my hubby (at age 71) was offered a kidney from a deceased donor in his 60s who had passed away from a stroke. That offer was retracted due to a health issue in my husband. Later, we received another offer of a kidney from a middle aged donor with candida exposure, CMV, and the kidney was "old" in that it had considerable time in procurement and transit, etc. We were more than willing to work with either situation - knowing younger patients have more decades of life ahead of them than we do. I simply hope to reassure everyone that older folks generally aren't taking away kidneys, they're largely accepting kidneys that formerly didn't measure up but are now getting a second look.

First of all, many on this site have been able to stabilize their eGFR and creatinine by following a kidney friendly diet. If you have questions about a diet? you can go to NKF website and look at the diet suggestions also has a kidney class you can join and have diet plans.

That being said, your kidney function does decrease as you age.

I was put on the transplant list back in 1998. I do not know my eGFR because they weren't measuring kidney function with that yet, just strictly by creatinine. I had not started dialysis. I only had to wait 14 months and I received a kidney from a deceased donor. Today, the wait is 3-5 years. Some transplant centers also have an age cut-off....some even age of 72 or 74.

If your eGFR dropped down into the teens, should you even consider a transplant and then it would probably have to be from a living donor.

Talk with your doctor/nephrologist and see if he can't refer you to a renal dietician. Stabilize your CKD. Did he tell you that you would need a transplant?

You really don't want a transplant if you can maintain your current status. It's a big surgery and after you are on steroids and immunosuppressant meds for the rest of your life. The first year is hard as you recover from surgery and your body is adjusting to your dose of meds. Most need these meds adjusted several times that first year . I am doing well 22 years later.

I would think that following a kidney diet is the way to go. Go talk with your doctor.

Skeptix profile image
Skeptix in reply to WYOAnne

There's good sense right there. Heading into an op like that is to be avoided at any age if possible.

I suggest you look for an online group who will have more time to answer your questions that our doctors do.

I am under the understanding that they attempt to give 70 year olds a kidney from a 70 year old Donor...just as they try to give 40 year olds a 40 year old Donor Kidney..I am 64 on Dialysis and I asked my Neph why should I take a Kidney that would save a much younger Kidney Patient and he said if a 30 year old needed a Kidney, a Donor Kidney of a 70 year old would most likely be rejected by the Transplant Team...and unless they have a 70 year old Patient waiting, the kidney would most likely go to waste...

You are never too old...It has more to do with yours and the Donors general overall Health

I agree with you. I was on Peritoneal Dialysis and the transplant list for 2 years, then Covid came along and all transplants stopped. They were gradually re-introduced for those under 60, which I accepted as I felt younger patients would benefit more. A week later transplants were open to all on list, and 5 days later I had mine (I was then 67) I had previously mentioned to my Nephrologist that if any available kidney was better suited to a younger patient then that patient should get it. However my Nephrologist explained that it has to go to the person who it is best suited for, and in addition, many waiting for Kidney transplants are also in need of double transplants like Kidney and Liver. There are also other factors like the general health of the potential recipient, and possible other health concerns. I was lucky that although my EGFR was 9, I was otherwise in good health, so was considered suitable for the operation. My generous donor was a lady in her mid-fifties, but the age may have been irrelevant, as the match was so good. For all those on the transplant list, don't give up hope; whilst I have had a few problems since transplant, my life has improved so much - despite Covid. Good Luck to you all

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