GFR 56 and scared

[KCRP1]

GP told me that she wants me to see a specialist due to GFR dropping last 2 years. I am now at a 56 (1.50 creatinine). Down from 61 (1.33 creatinine) last year and am 44 years old. I am scared to death. She said that they may just educate me and the disease is MOST ALWAYS progressive. I am worried about my future. I have no diabetes or High BP. Can anyone shed some light? Thanks Ryan

[Jayhawker]

Ryan, first it’s good that you’ve been referred out to a specialist. Although it isn’t always possible to determine the cause for deterioration, hopefully the specialist will be able to figure it out.

Regardless, a treatment plan will be created. You’ll need to work in tandem with your specialist to possibly reverse your renal deterioration; if not reverse it either stabilize it or slow it’s progression.

So, it’s very good to be referred out. You’ve still got a lot of function right now. This is definitely the time to see a specialist.

Let us know how it goes. In the meantime, nothing but good thoughts. It’s far too early for stress or panic.

Jayhawker

[KCRP1 in reply to Jayhawker]

I really felt like she gave me a death sentence.

[Jayhawker in reply to KCRP1]

Definitely not a death sentence. But your kidneys will need you to make some changes to support them; make their work easier. You should ask to be referred to a renal dietician as soon as your nephrologist figures out what’s going on. Any dietary programs put into place for you will be customized specifically for you based on your labs.

But many people live very well with chronic kidney disease for decades, my father certainly did. So, definitely not a death sentence.

Jayhawker

[Hidden]

Hi and welcome to the community. You sound like someone who needs to get educated on CKD. If you are in the USA you can go to davita.com and register for a free, virtual, 90-minute Kidney Smart class to receive a lot of information and resources. You can also go to kidneyschool.org and view the learning modules. Both are great ways to develop questions to ask your nephrologist. Ask your PCP for a referral to a kidney specialist as soon as possible. Secure as many hard copies of your lab results and bring them with you to share with the nephrologist. When you meet the nephrologist ask for a referral to meet with a renal dietitian and bring all lab reports with you.

While there is no cure for CKD you can slow the progression. Stay hydrated with water, no alcohol, no NSAIDs (ibuprofen, Advil, Aleve, etc.). Avoid fast food, processed foods, and red meat. Once you meet with the RD you can develop a kidney-friendly meal plan based on your needs and preferences.

While diabetes and hypertension are the two leading causes of CKD there are others. The nephrologist will decide what diagnostic tests to run to make that determination.

Avoid any added salt to your meals. Herbs and spices can season and flavor your foods. The labs will show what limitations you'll need on protein phosphorus, potassium, sodium, and calcium.

Be sure to bring as complete a personal and family medical history, as well as a complete list of all prescriptions, OTC, and supplements you take.

Having CKD is not a death sentence. You will need to make lifestyle changes and you can slow the progression.

Ask all of your doctors about an approved exercise regimen for you as that is also important.

If you need more guidance come back as often as you need to as there are many knowledgeable folks here.

[Meettheparents]

Hi Ryan, Don’t panic - there is hope! If you are willing to make some dietary changes, you have the power to improve your kidney function. I am a registered nurse and after I found that I had an elevated creatinine (1.85) in February of 2020, I did my own research. The most striking factor I found was that animal proteins are hard on kidneys. I now eat whole food, plant-based and avoid meat, fish, eggs and cheese. This change in diet has returned my creatinine to baseline (1.03) and it will hopefully continue to improve. I also do aerobic exercise daily and avoid NSAIDs, processed foods, salt and fat. I have learned that too much fat in the diet is harmful to the endothelial cells in the vascular system, which includes the kidneys. Yes, it is good that you have been referred to a nephrologist. My physician is impressed with my progress. A couple of good places to start include watching the Forks Over Knives documentary and YouTube videos of Dr. Neil Barnard, and reading Dr. Michael Gregor’s book, How Not to Die. Best wishes and keep us updated.

[Suzie1995]

I live in the UK and my gfr is 53 ...I haven't been referred to anyone ..I wish the docs would refer patients over here ..its a battle .I even had to.pay private to speak to.a dietician ..

[orangecity41 NKF Ambassador in reply to Suzie1995]

Similar situation in US for Original Medicare. My PD did give me a CKD diet based on eGFR (3b) and other blood work. So far it is working to slow progression.

[madonbrew]

Hi Ryan, I am 42 and got diagnosed about 8 years ago. I looked back at my eGFR when I first joined here back then and it was 42. My eGFR recently went down to 33 and averages about 36-38 but last time was 40. So basically in 8 years it’s not changed too much.

I’m glad you have been referred to a specialist. If in the U.K. (I’m in U.K.) then it’s probably because of you being younger with a drop of eGFR. I’ve been under a nephrologist for the past 8 years.

They will hopefully be able to figure out what’s causing the drop and then be able to treat it accordingly. It generally doesn’t improve dramatically but your numbers can vary so don’t be alarmed straight out but look at the trend of your results.

Personally I’m rubbish at following a kidney diet, however like the others have said, it’s probably good to ask to see the dietitian at hospital when you’re there.

My team sort me out with iron infusions as and when I need them. I’m a bit complicated as I have a rare autoimmune disease that’s causing mine . But basically I still function ordinarily and get on with life the same for now,

Take care!

[stargazey]

I'm 73 and for the last 25 years my gfr has fluctuated between 49 and 65. Last test was 63 but 6 months earlier was 51 - never been referred to specialist (UK).

[medway-lady]

I'm 68 tomorrow and my GFR has gone from 8 too 26 from Oct 2018 to last week. And I'm in the UK apart from tiredness I have no symptoms. My CKD is by a medical injury (a commonly used medication so just rotten luck). I was told no need to diet as it was down to the injury just drink lots of water and stay active. Both of which I do although I do avoid, grapes, baked beans and bananas but thats about it. I'd say try not to worry and your Nephrologist will advise you it might just be a watching brief. I'd add I have no disease its just become a disease through time and despite numerous tests etc my diagnosis is by elimination not because of any known medical condition so it may be you'll never get a cause. I had regular blood test for another disease and my GFR fell in one month from 90 to 8 without any symptoms so in a way your lucky your GP has picked up a potential problem. Don't think its a death sentence as it isn't so stay positive and active and drink lots of water.

[KCRP1]

Thanks everyone. I feel lonely and confused. My GP is not a good source of help. She is cold and fairly incompetent outside of the basic things.

[drmind in reply to KCRP1]

So that's why you have to become your own advocate and educate yourself. Then, you'll have some control over your situation and know the right questions to ask. Best to you. PS you can do it. Most of us did it and we're surviving and surviving well.

[suzell56]

Ryan, I too had a drop in my kidney functions and really had no other causes for it to happen. I went to a specialist (nephrologist) and learned so much in my first visit. Long story short, had to change my diet quickly, learn to drink more water & my numbers did improve slightly. I was referred to another specialist (urologist) by the nephrologist to see what else was going on. After many test & exploratory surgery, it was showing I had severe blockage and that the kidney was full of old urine and had atrophied. The urologist had to remove the kidney & other parts because it was causing many other serious health issues. That was 2 months ago, my serious health issues one by one started to disappear once it was removed. Yes, I now have to live on a restrictive diet (not a biggie) and make sure all is good by being checked every 3 months, but I feel great! Read all you can on this disease (I had to) if classes are offered at the nephrologist (mine did) go and don't be afraid to ask questions here or with your dr. I found Davita.com to be very helpful with learning more about the disease and getting kidney friendly recipes. Good luck and hang in there!

[Beckett24]

Hi, KCRP1,

The reply from Meettheparents was the single best and most practical reply I have ever read on HealthUnlocked. One thing was left out. Educate yourself on Chronic Kidney Disease (CKD). Buy "Stopping Kidney Disease" by Lee Hull. It's available on Amazon for $19.99 or less.

Following the type of diet that Meettheparents outlined (plant based diet) and in "Stopping Kidney Disease" (plant based diet) my eGFR went from 42 to 62, and my wife put me to shame when her eGFR went from 67 to 91, yes, 91.

Don't forget to drink tons of water.

The best thing you can do right now is learn everything about CKD and help yourself.

Good luck.

[KidneyCoach NKF Ambassador]

check out kidneyschool.org Blessings