This is all new to me: Hi, I have been told... - Kidney Disease

Kidney Disease

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This is all new to me

mulligan99 profile image
13 Replies

Hi, I have been told by my Dr. that I am now in stage three of KD. Have to tell you, it is scary. I have taken some classes offered by our Health insurance and while they were helpful, it is a lot of information to take in. So I am hoping to talk to people here that can help me understand all the medical jargon and just be supportive and patient as I take this all in. Thank you all

13 Replies
cmaxwell78 profile image
cmaxwell78NKF Ambassador

I hear you. Navigating that information and wanting to know what your personal experience with the disease will be is something we all want to know up front. It is easy to say and harder to do, but a day by day approach is what I have found to be the best way to deal with the disease and our fears. You've come to the right place, though! It's great to be in community with others that are in the exact same boat as you and are here to listen and encourage! I will encourage you to seek information from NKF, rather than going to Google. I encourage you to bring your fears here to those that are walking the same road as you but to also have someone close to you that can support you.

orangecity41 profile image
orangecity41NKF Ambassador in reply to cmaxwell78

I have found this to be so true on my CKD journey. Thanks for the good words.

lowraind profile image

Welcome! It has been scary for most of us. Even when you have some information, there is always more to learn and there are people on this site who can help you. It is a good idea to ask specific questions so that we know how to help.

Bassetmommer profile image
BassetmommerNKF Ambassador


This is the right place to be. At this stage of CKD, the best thing you can do is get educated. Did your doctor suggest that you change your diet at all? I highly recommend that you see a renal dietician to learn about how you can help your kidneys through diet. I was quite surprised to discover foods that were actually harmful to me and what was good. The other thing is to take a look at any medications or supplements you may be taking to make sure they are not harmful.

There is a lot of good information on food and diet at . The other thing I suggest is using some form of food tracker which you can also find on that website. I use

Keep in touch.

orangecity41 profile image
orangecity41NKF Ambassador in reply to Bassetmommer

I use the food tracker on Davita and find it to be helpful. Think I might print out a weeks worth and take it to my Doctor for information.

Zazzel profile image

Hi and welcome,

I remember feeling terrified, so you are not alone. It gets easier though and as everyone said, the more you know the better you will feel. Especially when you start making changes to your life in order to reduce stress, eat better and take better care of your body.

Talk to your doctor about the cause of your CKD and the type. Although there are many similarities in dealing with the disease depending on the cause and type, there can also be different ways of addressing it.

As you find our more information on the type and cause there will be people here who have the same issues or something similar.

In the meantime, please know that there are things you can do to slow the disease down and gain control back of your life. As the others have said, it will get easier.

MrsKoch profile image

Hi there! Finding out about KD is startling to say the least. You are not alone, we’re always out here 😊

Do some research, ask as many questions as you can think of. You might want to write them down and jot down the answers because it will become too much to remember.

I was “lucky” because I grew up in a medical household. Both my parents were nurses and my Dad had the same condition I do, as did his father and at least one sister. I learned early on what test results were and how to read them; I learned human anatomy. With them being in the medical field I had a pretty good idea what was happening when I found blood in my urine at 21. When I went to the ER the adorable 90-something-year-old Dr I told me I was too young to have PKD. I still remember the look on his face when he saw the ultrasound image 😝 Poor guy. Go with your gut instincts, listen to your body, doctors can be wrong.

Anyway, that was thirty years ago. I’ve had three healthy children and a good life since then. I guess my point is this, don’t let this diagnosis take over your life. It’s a speed bump in your journey. In the case of your medical care, knowledge is powerful. Good luck 🍀 💕

Alex2333 profile image
Alex2333 in reply to MrsKoch

what stage of kd do you have

MrsKoch profile image
MrsKoch in reply to Alex2333

Stage Three. eGFR is 50-ish% and holding steady.

I’m fighting a battle right now that’s nearly knocked me down but I’m feeling a bit more balanced now that I have an appt with my GP tomorrow. Shingles, eye surgery a month ago was a failure so now I have to start the process all over again. Anxiety attacks, more shingles. Ugh. Isn’t life fun?

Sometimes I wish my kidneys were the problem. This eyeball makes me miss tequila 😝

14McCabeE profile image
14McCabeE in reply to MrsKoch

hello u say you have stage 3 ckd and 30 years later have a egfr of 50% ish has it been that throughout those year or has it done down ive had stage 3 for about 4 years i have lots of kidney stones plus sufferd from anorexia for years where i abused laxatives i belive its that that has cause my ckd and it really upsets me to think i was stupid to let a eating disorder damage my body. ive found my egfr at 38% at my lowest waight but since ive got to a healthy weight stopped the laxatives and recoverd by egfr stays around 43 upto 51 is it normal to go up and down but stay in a range i was at 51 8 weeks ago now im at 45 it scares me over past 8 month ive been going gym 4 times a week doing weight lifting my doctor says thats good and ive not been tgold to eat a special diet my doctor says a balanced diet and keep hydrated im just told to avoid muscle building drinks ect this is what confuses me as all i keep seeing is kidney diets but my doctor hasnt said i need one does that mean i need to change i eat a balanced diet oats every morning lots of fruit and veg rice chicken fish and sweet potatos natural fat free yought all healthy foods but on internet it says kidney desise carnt have oats chicken ect i just stay as i am please advise xx

Bet117 profile image
Bet117NKF Ambassador

Hi Mulligan!

Welcome! You have come to the right place...wonderful, knowledgeable and supportive people.

I agree with Zazzel and feel that is absolutely normal to feel fearful and anxious at the words "kidney issue".. I sure did..

Knowing your labs, speaking to your doctor, eating well and taking the best care of yourself as well as time will ease your distress.

I also agree with Mr. _Kidney about sitting down with a Renal Dietician with your labs and letting them make dietary suggestions to you that will help slow the progression of the CKD and are tasty.

I saw the dietician who sees renal patients at the former hospital where I was seen. She gave me great suggestions.

Two weeks ago I spoke to the Renal Dietician at the Davita center where I took their class regarding a slight anemia and albumin situation. She gave me great suggestions...We will be communicating through e-mail in the future if I have questions.

A few hours goes a long way!

Just remember that you are not alone.. One of us will always be here on the other side of the computer- just reach out!

Please keep in touch as we care!

rascal01 profile image

read and learn as much as your brain can hold! Ask questions, write them down. Yes there are alot of wonderful very helpful people here to help. Knowledge is power. you are doing this for yourself. good luck!

mulligan99 profile image

Hi everyone, THANKYOU so much for the kind words and support. There was a lot of suggestions that I haven't thought of. I feel like a took a BIG first step in being able to do this and not let it run my life thanks to you. Hope you don't get tired of me asking a lot of questions!!

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