My husband hasCKD. I’m so scared - Early CKD Support

Early CKD Support

7,122 members2,550 posts

My husband hasCKD. I’m so scared

Dianamillo profile image

Hello everyone!

I’m really scared for my husbands life. He is 45 years old and his primary has just diagnosed him with CKD. He has GFR of 70. Doctor really scared us by telling us that at his age he would properly require Dialysis and a kidney transplant. We have an appointment to see a specialist on December 14th. I’m so scared because we have three beautiful girls together that still need him for more years to come. I don’t know much about CKD but our primary scared us so much. Any advice would be great. Thanks

32 Replies

What? Surely there is more to this dr's concern than just a GFR of 70.. I'm 52 and I've had a fluctuating GFR of 60-77 for about 11 years.. I was in my 40s at a GFR of 60.. but no other bad kidney labs.. There must be more to his labs than just the GFR which isn't even terrible.. If he does have CKD that's like stage 2... but that doesn't mean he will end up on dialysis...for sure... Go watch dadvicetv on youtube. He was stage 5 and is now stage 3-4. He has nephrologists on his show.. Did the Dr dx him with some type of autoimmune kidney disease?

Dianamillo profile image
Dianamillo in reply to Woven

Hi!No he has not been Diagnosed with any other disease. We don’t even know what’s causing the low GFR. We have an appointment with a kidney specialist on the 14th of December. Hopefully he can shed some light into this. Thank you for your response makes me feel like there is hope.

Milli77 profile image
Milli77 in reply to Dianamillo

70 is not high but not low either.

Jude13 profile image
Jude13 in reply to Dianamillo

My appointment is 14th of December as well, my gfr is 18

Milli77 profile image
Milli77 in reply to Woven

I agree with the above. GFR of 70 does not sound like CKD at all,

Either you misunderstood the doctor or your doctor is ignorant. The eGFR is simply an estimate of the GFR based on the serum creatinine, which can vary widely depending on protein intake, hydration status, and other things. Even if he does have a GFR of 70, he doesn't need to worry about kidney failure; he just needs to make some lifestyle changes which include serious control of blood pressure, weight loss if he is overweight, and eating a healthy diet. He should stop eating processed foods, salty foods, and non-nutritious foods. If he is a heavy meat eater he needs to cut back on that. But the reality is that he likely does not even have any significant kidney disease. Ask the doctor to have a cystatin-C run on his serum. It will tell you if his kidneys are working properly or not.

I am sorry to say this, but if your doctor said these things, that is, in my opinion, criminal. A egfr of 70 is stage 2 CKD, and most drs. would not even mention CKD (not that I consider this the right thing, because I believe that the sooner we can take action to protect our kidneys, the better). Hopefully, the specialist is a nephrologist, but most of the time, depending on the country you live in, nephrologists are not called in until stage 3 or 4. If anything, your husband needs a new primary. Unless there is some other underlying problem, your husband is in a great position to make lifestyle changes to stabilize and even improve kidney function.

Hi!We will be seeing a nephrologist thankfully. The appointment is next month and I really hope he can shed some light into all this. What should he be eating? I’m scared and I’m not sure what to feed him. He has cut back on red meat all together and low sodium nothing processed. We are just doing vegetables and salads with chicken and fish. He is also eating lots of strawberries and berries and apples. I was told this is good for his kidneys. Any advice is appreciated. Thank you

BettysMom profile image
BettysMom in reply to Dianamillo

It sounds like you are making the right changes in his diet.

70 is nothing to worry about at all.

There must be some kind of mistake or a lot more to this situation that was not shared with you. A GFR of 70 is considered NORMAL (anything above 60). Now it is NOT an ideal GFR for a person at age 70, but for any doctor to say he now needs dialysis and perhaps transplant is OUTRAGEOUS. Which is why there has to be more to this situation that you either misunderstood or the doctor did not share with you. I am even VERY surprised that the doctor even referred you to a kidney specialist. At your husbands GFR level, it is NOT usual to be referred.Most doctors who see a patient with a GFR of 70 would not even talk about it. They would look at the blood test result, see everything was in the normal range (which 70 is) and just send you home. A very thorough doctor would PERHAPS consider sending your husband for an ultrasound of kidney and urinary tract, or CT scan. There are SO MANY things that can cause a GFR at his age, that has nothing to do with kidney disease. I think it was just yesterday that someone posted here (a woman in her mid 40s) that saw here gfr drop from her usual of 99, down to 72 (or a bit lower). They found a little blood in her urine. Further testing she was back to her usual range of GFR. It was thought to be caused by a UTI or urinary tract infection.

Based upon the limited information you provided it is impossible to understand why he was referred, why the doctor mentioned transplant, etc. There must be something more to this than just a GFR of 70. My gfr has been in the upper 30's, low 40's, for years. I see a kidney doctor annually who basically does nothing except blood test and urine tests. I mentioned one time, solely out of curiosity, about transplant lists, etc. She smiled and said that my GFR has to drop SIGNIFICANTLY before I could even be added to such a list. Generally speaking your GFR must be 20 or below, a hell of a long way away from his current 70! ? Dialysis is not started, generally speaking, until gfr is about 15 or less. But again lets say it is 20, a hell of a long way from 70.

Something is missing here. For a doctor to even refer you to a kidney doctor at egfr of 70 is unusual. Very. To talk about dialysis, transplant (which even if your husband does have CKD (which I doubt based upon what you reported) which is years away, is irresponsible.

silverfox81 profile image
silverfox81 in reply to RickHow

only way a dr would mention stage 2 ckd is if there is protein in urine. 2+ or more protein in urine could warrant a trip to nephrologist

RickHow profile image
RickHow in reply to silverfox81

Yes this could be the missing bit of information that was not in the original post (perhaps protein in urine). A normal amount of albumin in your urine is less than 30 mg/g. Anything above 30 mg/g may mean you have kidney disease, even if your GFR number is above 60. There is so much missing information in the original post (was there protein? Were other causes of the protein ruled out, since it can be caused by many things not only kidney problems? Was there a urine test? , etc.). It still seems unreasonable for the primary doctor to tell the patient they are doomed for dialysis and transplant. This man is mid stage 2 CKD, at 45 years old. The AVERAGE life expectancy for stage 2 (if it is with protein in urine, a big IF we do not know) is at least 30 years. He would be 75. And there are advances daily in CKD and medicines and certainly over 30 years there will be more. The primary doctor, in my opinion, should have helped the patient seek expert help (kidney doctor) as he did, but left it to that expert to talk about end stage, etc., which at stage 2 does not need to be part of the conversation. BUT it is all speculation as we don't know if there was even a urine test.

Dianamillo profile image
Dianamillo in reply to RickHow

Hi Rickhow!Our doctors appointment is almost here and hopefully we can have more answers soon. All his lab work was fine but I think he had a small amount of protein in the urine. It showed normal range though. He also had a 24 hour creatinine Clearance test done And that showed his GFR at 80. Still a bit low for his age but better. I’m confused about protein in the urine in his lab worked it showed for a normal range was from 0 to 20. Are we supposed to have some amount of protein in the urine is this normal.

This was his total protien in urine

Blood work

The rest of his urine test seem fine but I’m not a doctor so who knows. Can you please help Interpret these for me.

Blood work
RickHow profile image
RickHow in reply to Dianamillo

Yes we all have some protein in our urine. You will also hear it called albumin. Now don't get confused by the numbers some of us use here to define what is normal, what is bad, etc. You see it is measured in different terms in different countries. For example here in the U.S. a common measurement is mg/g. So anything less than 30 mg/g is considered normal. Some places measure it in grams/dl in which case 3.4 to 5.4 is normal range, or some measure grams/liter in which case 34 to 54 g/l is normal./L). Then it gets a bit more confusing because each lab also can have different "normal" ranges. GO BY WHAT IS ON YOUR OWN REPORT. You said your lab considers 0 to 20 as normal. BUT on the report you attached, it does NOT say normal is 0 to 20, it says normal range is 5 to 25 mg/dl. And your husbands result was 4 (the L indicates lower than normal, which is not a bad thing). He has no evidence of abnormal protein in urine. So to be honest I am still confused why you were referred to a kidney doctor if there was NO ABNORMAL protein in the urine, his egfr was 80, and yet your doctor talked of transplant.

Dianamillo profile image
Dianamillo in reply to RickHow

Thank you so much for all your input RickHow. I can tell you have lots of knowledge in this matter. We have an appointment on the 14th and I can’t wait to see the specialist. I will let you all know what the doctor has to say about all this. I’m so confused myself of why our primary doctor takes about transplant and Dialysis makes no sense to me.

RickHow profile image
RickHow in reply to Dianamillo

The 14th will be here soon. But I would not worry much. I just saw the rest of the urine test you sent (i only saw the protein part before). ALL categories were NORMAL. His urine was 100% normal. Normal Urine, no protein in urine, egfr at 80, so all seems great and can't imagine what the heck the doctor was talking about. yes let us know what kidney doctor says. So NOT hesitate to ask all you questions. Be your own advocate. Write down what you want to ask so you don't forget in your nervousness. Such things as--with no protein in urine, egfr about 60 (actually 80), why are we here?

--why did the primary care doctor say he needs Dialysis and transplant?

--do we need any special diet or just stay within the limits of normal recommended amounts of daily intake of protein, salt, potassium?

Dianamillo profile image
Dianamillo in reply to RickHow

Hi! RickHow So today was our appointment and the doctor told us that his kidney function was a little low for his age but nothing alarming. He thinks it’s his norm. He explained that not everyone is the same and that he will not label him as CKD. He doesn’t understand why his primary talked about kidney transplant or Dialysis. He said all his urine was 100% normal and that he wants to see him in a year for a follow-up. As far as Diet goes he wants him to maintain a low sodium diet but his labs were fine he doesn’t need to have a lot of restrictions. Just eat healthy that’s all. I’m a little less stressed now and hopefully we can enjoy the holidays . Thank you so much for all your advice. Happy holidays 🙂

RickHow profile image
RickHow in reply to Dianamillo

GREAT news but not at all surprising. There was no need for the kidney doctor. Of course he will see you in a year because once a doctor gets his hands on you he will never let go :). As far as low sodium my doctors tell me to watch the salt and try to keep it around the daily recommended amounts. Don't go crazy and totally eliminate it. Body needs some sodium, and his blood test were perfect with the sodium. And don't be afraid to once in a while go a little excessive. A day here or there with something salty, given he doesn't have CKD and his tests were normal, is NOT going to do permanent harm. Great news. Have a great holiday, ALL IS WELL!

ps. His appointment with kidney doctor is VERY near. I would not make such huge changes to my diet as you described so quickly. It certainly can not hurt him to do so. But his kidney is not going to deteriorate so rapidly in 2 weeks. And you don't even know yet if there really is a kidney problem that diet matters. And you might be eliminating some nutrients that he really needs. SOME protein in the diet is needed, SOME salt is needed, etc. For 2 weeks just don't over indulge in high protein, salty, processed meats, soda. IF the kidney doctor feels there is a problem (which I doubt) they will instruct you about diet. But all this is guesswork until you better understand why the doctor even referred you in the first place. As everyone has written, what you have reported just doesn't add up. There must be something else that the doctor knows the was not explained to you.

Dianamillo profile image
Dianamillo in reply to RickHow

Thank you so much for your response. Looking through past lab work his GFR has been in the 70’s for almost 5 years now. It has never been mentioned till now. I really hope this turns out to be nothing and I will take your advice with the diet.

Are primary doctor has always been a nut case and after this I don’t plan to return to see him. He scared us so much and without any explanation. My husband is healthy doesn’t have any underlying conditions that we know off. I honestly don’t understand why he told us this.

RickHow profile image
RickHow in reply to Dianamillo

That is basically what everyone has been writing to you, that 70 seems to be his normal. it is considered normal. For five years he has not done any extra restricted diet, lifestyle, etc. and it has remained constant. One of the critical things a reliable physician looks at when a person has a possibility of CKD is to look at a patients trend. Has their GFR remained constant or is it decline. A sign of CKD is decline of GFR over time. Most doctors, no matter what your GFR is on one test, will wait a bit, test again, to see if any decline, or any improvement in the first result. Your husband is same for years. Is at 70.I would stop my worry. But your appointment is all made with the kidney doctor you might as well go. If it were me I would be firm with the kidney doctor and openly say, why was he even referred if he has been at 70 for years, has no other symptoms,

At his age yes go for transplant I’m on pd dialysis but declined transplant as at 76 don’t think my body would take it the trauma yes if I was younger

RickHow profile image
RickHow in reply to Soneram

Unfortunately a person with such a high efgr can NOT even be considered for a transplant by any transplant facility. The transplant list in America has over 100,000 people waiting and yet there are only about 20,000 transplants each year. Now he may find a private donor (relative, spouse, friend) etc., but even then at egfr 70 no way a doctor would do it.

Soneram profile image
Soneram in reply to RickHow

Over here in England we undergo tests for everything including heart and if you pass them your out on list which is getting better but also if you have family who will test to see if they are a match all the better

I also have CKD I was diagnosed 17 yrs ago I am nearly 63. My kidneys have both swollen and they feel hard. I feel fine and the doctor said he thinks I will die before the kidneys die !! We may die and leave our country but our spirit will join the spiritual world where the maker of this world resides. Tell your husband about the spiritual world where we all meet up eventually and it’s a beautiful place of fabulous colours and light. My mum and Dad and brother are there already and I am not scared to die I will embrace the moment and not be a coward.

Hey I'm far from an expert but my GFR has been 60 for at least 6 years now with the occasional drop below.

It was never mentioned and the only reason the doctor classes me as having CKD is because on of my kidneys has failed due to infection.

Even at that the dr has simply told me to work on eating healthier to bring down my cholesterol or ill have to be put on medication for it.

And to be careful to make sure I don't damage the other kidney

RickHow profile image
RickHow in reply to Jodyfmurphy

One kidney here too Jody. This of course gives a lower egfr but does not mean the existing kidney is "CKD". I have started cholesterol meds which brought my level to normal and had no effect on my egfr.

I am 40 years old and have a gfr of 76 and last year had consistent protein in urine. So unless your husband is having lots of protein in urine he will be ok. However, if he has 1+ protein in urine or more then yes he probably has some abnormalties. I would definitely find out how much protein in urine because that is one of the top predictors of how fast you will lose kidney function. But you need to breath and get all the proper tests done before going full panic mode.

You may also like...