Stage 1 Chronic Kidney Disease: Hi All, new... - Kidney Disease

Kidney Disease

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Stage 1 Chronic Kidney Disease

blakesq profile image
11 Replies

Hi All, new to this forum. I was born with 1 kidney. I am 54 years old. I have been seeing a nephrologist once a year for about 10 years now just to keep an eye on my kidney. I saw him on Tuesday, and for the first time he said I had stage 1 Chronic Kidney Disease. But he also said based on my my blood and urine work my kidney function has basically been the same for the past 10 years, and in fact the protein in my urine has improved a bit, probably because I reduced animal protein and milk from my diet.

Anyhow, he had never used the term "Chronic Kidney Disease" or "Stage 1" before. The next day I started thinking and worrying about it, and then looked up online, and the internet said stage 1 leads to stage 2, stage, 3, and eventually to kidney failure. So, I got very worried, told me wife, she and I agreed I should call my doc back. The doc's office calmed me down and said people who look up medical stuff on the internet often get things wrong. And that my stage 1 is simply a label for protein in my urine, and that stage 1 does not necessarily progress to stage 2, and stage 3, etc. They said I could maintain stage1 for as long as I live (hopefully assuming I will live a long life).

So, I feel much better after freaking out a bit. I just wanted to check this forum out and see if you all agree with the above? Thanks!

11 Replies

Welcome to the community. The internet can be a dangerous place if you use it for diagnostic purposes. Read all you want and use the information to develop sound questions to ask your doctors. The leading causes of CKD are diabetes and high blood pressure. Being born with only one kidney you are wise to be careful of what you eat. GFR does decline as a person gets older but you have a different situation since you only have one. There is no margin of error.

You'll find that many in this community weren't told until they were in the later stages of CKD, 3 or 4, and have had to scramble to change meal plans and adapt to a different lifestyle to slow the progression.

For example, in late June of 2017, I was told I had CKD and my GFR was 32. I was 66 at the time. I obtained copies of all of my previous lab work and found that I had dropped into Stage 2 almost a year before that and was never advised by any doctor. Needless to say, I have a whole new group of physicians on my care team.

Since then my GFR has risen to a high of 65. Most importantly is that over the last 31 months my GFR has averaged 51. There are other numbers to watch including creatinine and BUN, but again, your situation with only one kidney is a bit different.

Stay hydrated, keep up your exercise routine and be careful of what you eat. Once I switched out my physicians to doctors who would not hide medical information from me I asked the new nephrologist for a referral to see a renal dietitian. Together, with copies of my last years' worth of lab work, we developed a kidney-friendly meal plan that I follow to this day. You might ask your nephrologist for a referral to an RD in your area.

There are knowledgeable folks in this community who have experience with one kidney and give them time to read your post and provide you with more specific information to guide you.

Best of luck and again, welcome to the community.

Sammi_n_Munk profile image

Hello Blakesq! Welcome to the forum! I have to tell you, it’s always inspiring to read posts like yours. I’m glad to hear that you’re only stage 1. It’s evident that you’ve done very well managing your diet and exercise regimen and overall good health. Kudos! And I must say, I do agree to a certain extent, with what your doctor has said about researching medical topics online. I find much of the time, it can be very informative and helpful, especially for those of us who are seeking advice on a proper kidney friendly diet, but on the flip side of that, it can also create unnecessary panic. However, in my experience with regard to my kidney issues, I have found that I actually learned more helpful information from the internet and this forum, on what dietary changes I was requiring to manage my CKD. And truthfully, and this is a little shameful, if it hadn’t been for the online research that I’ve done, I wouldn’t have known the name, or the reason for why I was always passing out a few years ago. Back then, I had been hospitalized numerous times for other health issues that I was suffering from, and I told almost every doctor, nurse, physiotherapist, janitor, pretty much anyone who would stop into my room for a second, about my fainting spells, and nobody could tell me what it was. I felt somewhat betrayed by our medical community because this was information that could have saved me from a lot of grief and fear. Not even my nephrologist warned me about it. By the way, the fainting/sick spells were being caused by a condition called, Metabolic Acidosis, that can be brought about by too much acid in one’s system. In my case, my acids were not being regulated properly by my kidneys. That being said, it is important when getting health information from the net, to follow up with a physician so that one does not drive themselves “right out of their tree!” Lol! Once again, welcome to the forum! Look forward to more of your posts! God bless. 👍😊

orangecity41 profile image
orangecity41NKF Ambassador in reply to Sammi_n_Munk

Agree with you and Mr K, on researching. You have to be knowledgeable about the source. Some are just trying to sell product or book, or is not a reliable source for Kidney information.

Bet117 profile image
Bet117NKF Ambassador in reply to orangecity41

As do I agree with both you and Mr._ Kidney, OC about reading various internet information. Being mindful of the sites the information is from is so key.

I often contact members on the site who have a particular kidney disease and ask them to help support as they walk the walk.

AndrewT profile image

Dear blakesq,

I have that, rather Superior Medical Drama- House- starring Hugh Laurie. One episode concerns a Lady, who 'Presents' with Terminal Cancer- she knows the Diagnosis and 'Just Requires' regular Medication. All well and good until.... Her Symptoms become 'Erratic' and do NOT 'Follow', the normal course of her Disease. At this Point, one of the Team, ask her 'How Was She Diagnosed?' She replied that she had Diagnosed herself....BASED on an Internet Search. The episode ended, with the lady, 'Needing Only, a Course, of Tablets'.... She Didn't have cancer AT ALL!

Are you Wondering, if this has any 'relevance' here, blakesq? Funnily enough.... So am I! Bluntly put, are you going to Listen To 'Gossip'/ 'Mis-Information'/ what you, or someone else 'Read Somewhere'..... Maybe what the Local Schoolchildren Think it is! Or are you going, to listen, to YOUR OWN Consultants? (If it, really is, the Neighbours- or Schoolchildren, then i can't help you further.....)

Sorry to be, so Blunt, but this Internet 'Thing'- whilst being genuinely Great for 'most' things... Now what did, your Own Doctors say? Oh yes 'that this WON'T necessarily, lead to, 'End Stage' Renal Failure'. 'Didn't they, also say, that you will be 'Carefully Monitored' too? You ARE receiving Expert Care, from Top Professionals...... IF you are still, in any way, worried, about anything, then Speak to them blakesq.

Anyway I've 'told you off', quite enough for one day- SORRY! Kindest wishes, honestly.


Bet117 profile image
Bet117NKF Ambassador in reply to AndrewT

Agreed, Andrew.

Your medical team is there for your care and paid well.

If they do not clarify and answer questions, advocate and either see them or call!

Great point!

Allank profile image

of course this group is part of the internet - we want to be informed partners together with our team of doctors and the internet helps

Bet117 profile image
Bet117NKF Ambassador in reply to Allank

To some extent. Chose your sites wisely. Mayo Clinic, Davita, National Kidney Foundation, University of North Carolina, are all good starting points.

We support each other here and care!

Smilerf profile image

Yes you are overreacting

WYOAnne profile image
WYOAnneNKF Ambassador

You are very lucky that your doctor has told you are at Stage 1, many on this site don't find out they have CKD till they are at Stage 3 or 4. As Mr_Kidney said eat healthy, even see about a visit to a renal dietician. Keep your self hydrated and exercise. Your doctor is right, if you do something now you may never progress at Stage 2.

Best of luck to you!

blakesq profile image

Thanks for responding to my post. I feel much better after talking to the doctors’s office and seeing what many of you had to say.

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