Bad test results, don't know if I can do this - Kidney Disease

Kidney Disease
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Bad test results, don't know if I can do this

stevielynn
stevielynn

Got results today..There are 3 cysts on my kidneys my creatinine was 1.02 high my gfr was 57 not good.BUN was 14...So I am 3rd stage kidney failure...Totally cried in dr office embaressing....Had a list of food I am suppose to eat so then went to gro store..Got so frustrated in there reading labels plus I do not like too much of what we are suppose to have, plus I am not good at trying to put a meal together with this stuff..Broke down crying again and had to get out of store..So I just didnt eat anything all day..I am scared to death to eat since I dont know what I am doing and I dont understand the amount of certain foods we can have and since I watched my dad die with this...She put me on glimepiride. I have to see a nephrologist and see her again in 6 weeks...I so wish my friend who had this was still here so she could guide me and help me..I just dont know if I can do this, I am alone and I WILL NOT do dialysis..May just have to keep going like I have been and accept my fate..Sorry need to get off here and have another cry...

39 Replies
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Bet117
Bet117NKF Ambassador

Hi Stevielynn,

Please take a breath. Honestly, your feelings are absolutely normal and the it's okay to cry. It is overwhelming and frightening.

Lynn, until your doctor says dialysis, or anything else, don't go there.

At least now you have a baseline and some answers.

Better knowing something than punching in the dark. This will be a" new normal"; some lifestyle changes. Think positive !

Going forward, put together a medical team who will listen to and communicate with you in terms that you understand and also communicate with each other; be it your nephrologist, PCP and any other physicians who are treating you. If they are unwilling to do so, find one who will.

I am happy that you will see a nephrologist as with their specialty they will be a great help. Nephrologists have their own labs and tests. which will present their perspective and set up an action plan to best meet your needs.

CKD is not curable but progression can be slowed down through diet and medication.

My thoughts, keep track of your labs and bring them to all appointments. I also note prior results next to new ones and check off areas of concern.

Ask a friend or family member to go with you for the tests and appointments. They will be a second set of ears and a scribe so that you can focus on the discussion and have questions responded to so you don't leave any appointment feeling as you did. It will make things easier.

Ask your nephrologist for a referral to a renal dietician who will look at your labs and doctors food suggestions and set up a menu of foods that are both healthy and appetizing.

If there is not one available see if the dietician handling kidney patients at your local hospital will speak to you.

You will eat, but make healthy changes and adjust. I don't miss a lot of foods one bit and have learned to love vegetables and other kidney friendly foods and recipes.

Google Davita.com They provide a free smart class run by their nurses; see if there is one in your area and attend; it's about 90 minutes. I found it interesting and informative. When you are up to it, check it out!

I know that this is a lot , but bear in mind that this is a process and a new journey.

One breath at a time, one moment at a time and one day at a time. ....Remember that your beloved friend is always with you; let their love and wisdom radiate into your heart and be your strength .

Please take care of yourself and feel free to reach out to anyone of us at any time as we will always reach back. You are not alone and you are cared about. You will get through it...

Remember that!

Sending you good thoughts always...

Bet

At Gfr 57 you’re not anywhere near dialysis. Calm down. Eleven years ago my gfr was 47 today it’s 71. Work with your doctor and find a solution. Keyword here is DIET. And organize a team of medical professionals- PCP, Nephrologist etc to look at your health. I know how you feel cause I was once there, but panicking and doing nothing is not gonna help you.

No not near dialysis, but the words stage 3 kidney failure scare's me to death. I watched my father die a horrible death from this, it was certainly enough to scare me, besides I would be willing to bet I am not the first person, who has traveled through this group's door's that was scared

Bet117
Bet117NKF Ambassador
in reply to stevielynn

Guaranteed- you aren't!

Sending good thoughts and strength!

stevielynn
stevielynn
in reply to Bet117

thank you

Chris1974
Chris1974
in reply to DaveThebe

This 100%.

Plus we don't know your age. Man or woman? Are you 85 years old? 25? If you're 85 years old with a gfr of almost 60 isn't anywhere near dialysis. I bet you can get your gfr upto 70s or 80s with a proper diet plan. I can't stress hydration enough. You're creatinine isn't bad either.

Most men with normal kidney function have approximately 0.6 to 1.2 milligrams/deciliters (mg/dL) of creatinine. Most women with normal kidney function have between 0.5 to 1.1 mg/dL of creatinine.

Your BUN of 13 appears normal as well.

In general, around 7 to 20 mg/dL (2.5 to 7.1 mmol/L) is considered normal. But normal ranges may vary, depending on the reference range used by the lab, and your age.

Anyway go see a nephrologist and see what they say. If you need a second opinion then don't be afraid to go there.

Most importantly relax!

Thank you so much..I am female 66 yrs old

Calvin18
Calvin18
in reply to DaveThebe

Hi Dave I’m wondering how you got your gfr from 47-71??? Was it just low sodium and plenty of water?

DaveThebe
DaveThebe
in reply to Calvin18

Nothing too hectic to be honest. It just seem like there’s no underlying cause to my low gfr. I cut all processed foods and replaced them with vegetables. I also eat very little dairy products, like a slice of cheese once in a while. I get my protein from chicken breasts, don’t like fish. No salt in my cooking. I get my sodium from things like lettuce. I also stopped all medications (talk to your doctor first) I also used to take Nexium, stopped it of course. Diet helped with my acid reflux. Now I only take two medications - BP meds and Allupunurol to control my Uric acid. I stoped all supplements. I used to be a weight lifter, now I just do a bit of cardio, drives me nuts to to be honest. Weights are a drug... I’m talking to my Nephrologist about this. And yes, plenty of water. But I’m careful about water it can unbalance your electrolytes if you drink too much, I drink about one and half liter a day.

Calvin18
Calvin18
in reply to DaveThebe

I too was on nexium for a very long time and my nephrologist told me my CKD stemmed from taking it. I used to lift weights also and he seems to think i have excessive protein in my urine from that. He told me to be on a 1500 of sodium a day which I’ve been abiding to but he didn’t say no dairy.

My gfr was 49 and my next lab test is next month I’m hoping it went up!

DaveThebe
DaveThebe
in reply to Calvin18

Good luck with your next tests.

Bassetmommer
BassetmommerNKF Ambassador

Hi Stevielynn,

Ok, now you know. Go ahead and mourn and cry. Your life is going to change slightly. Everyone handles this diagnosis differently but we all feel scared and sad. Its perfectly normal.

Then, make a choice. Are you going to be a victim or a warrior?

I hope you choose to be a warrior because you can win at this. Bet gave you sound advice on your first steps. Change your diet, see a renal dietician if you can and form a trusted health care team.

Then step back and see how lucky your are. There are over 37 million people with CKD and many people do not even know it or know what to do about it. You are here, asking questions and seeking answers. We are here to support you and help guide you in your new world.

Just so you know, stage 3 is not a life sentence. I was there for over ten years. It slipped down due to medication change that was not good for me. I also was not educated on CKD or nutrition for CKD. We LOVE to talk about foods we eat and what works and what doesn't.

You are so not alone, we are right here, right at your finger tips. Take a question at a time and soon you will have control again of your life. Practice feeling that there are a whole lot of people walking right next to you and you can do this.

kidneyfund.org/kidney-disease/

thank you

It is definitely scary. I cried too when first diagnosed almost 4 years ago. The diet will take some getting used to but it is totally doable. There is more to it than diet but that is a great place to start. Medications play a big role too. I am healthier and more fit now then before I was diagnosed. I feel great most days and kidneys are stable. I don't like the label of stage 3 kidney disease and wish I didn't have it but having it has been eye opening and empowering for me and it can be for you too. It does not have to be a death sentence.

I do not object to the term "stage 3 kidney disease", but I do object to "stage 3 kidney failure". I wear glasses, but I do not have eye failure. As we age, everything starts to wear out. That does not mean it is failing, just that it is wearing out, just like everything else.

That is a good point. Big difference between stage 3 kidney disease and what stage 3 kidney failure implies.

Hello stevielynn, R E L A X!

First of all I hope it helps you to hear that you aren’t suffering from actual kidney “failure” nor kidney “disease” as such in spite of it’s title Chronic Kidney Disease. Rather you are experiencing a reduction in your kidney function Many on this site would be relieved to have an eGFR of ‘just’ 57. I have just one kidney and have been as low as 28 eGFR.

Take this news as an opportunity to work on helping to keep that eGFR stable or even to possibly improve it.

Everyone has given you wonderful advice. Hopefully, apart from a nephrologist you will also be referred to a dietitian - meanwhile eat healthily: not too much protein, little or no salt or alcohol, plenty of water and exercise. Take a walk in the fresh air which will release those feel-good endorphins and help you to feel more relaxed and reassured. Hope that helps.

thank you for putting it a different way, not so scarey....and good advice

Every cloud has a silver lining... I'm Stage 5 and on the verge of dialysis; I wish I had your numbers. The progression of CKD can be slowed down and you may never need dialysis - you caught it early.

Besides dietary changes, there are a lot of other things you can do to slow progression:

1) Exercise

2) Lose weight (if you're overweight)

3) Get your blood sugar under good control, if needed (diabetes is the #1 cause of CKD)

4) Get your blood pressure under good control, if needed (high blood pressure is the #2 cause of CKD)

5) Stop smoking (if you smoke)

6) Stop drinking, especially if you can't drink in moderation (impaired kidneys don't handling the toxicity of alcohol well)

7) Get good sleep every night (get a sleep study done if you suspect you have sleep apnea)

8) Review all medications (and even vitamins and supplements) you currently take with your nephrologist as some drugs can harm the kidneys

Hope this helps; stay strong.

stevielynn
stevielynn
in reply to steve680

thank you so much and good luck

Hi Stevielynn, I was feeling the same way last week when I found out about being Stage 3. What happened to reality? What happened to life? What happened to me? It felt other-worldly, like I entered another dimension of disbelief. Was I in a nightmare?? Was I in someone else’s nightmare? I grieved for days and saw my life go down the tubes. I couldn’t believe all I could no longer eat as I emptied my refrigerator and cabinets of all my favorite foods And then found myself eating bare minimum while noticing 99% of the food in grocery store are for other people and not me. Same for fast food places. Not for me anymore. And then the strangest thing happened. I felt love for myself and caring about myself. This fractured person all of a sudden became involved in my own healthcare and welfare. I was no longer a victim, but a victor. I was becoming stronger and more flexible in both mind and body. It will happen to you, too. Life isn’t ending...it’s just beginning—anew! You can do this!

thank you so much..I wish you well on your journey

I felt exactly like you last year. I saw my Mom go through dyalisis as well so I know how scared you are. It's scary but as you do the things you need to do to adjust you will start to feel at ease. The diet gets easier the more you understand it. If you are still feeling depressed and anxious it helps to talk to a therapist. This site will help you so much because we are all here to help each other. Hope this information you get here will help on your journey.

stevielynn
stevielynn
in reply to itzmich

thank you so much. I hope so too

In addition to what others have said, when the time comes (and hopefully it is far down the road), you do not have to have dialysis. I also said no to dialysis. I choose palliative care and then hospice.

Wow, I've been on this site just a few weeks and I can tell you, these folks know their stuff and you can't pay a counselor for what they provide. I''m amazed at the response you have received on this comment. I think it's because inside, we all have felt exactly as you feel, whether we expressed it in writing or in words to someone or not. You said what most of us think. That being said, the first job is to get past the shock and change our thoughts. These folks have basically said, focus your thoughts on a plan of action. No doctor can offer a better prescription than that. That's what they told me to do when I first joined this group and I've been doing it and it really makes a difference. Do the thoughts you are having still live in the back of my mind. Of course they do, and always will, but I keep my action plan out front and center (without obsessing over it, just making it routine part of the day) and those other thoughts have to stay way in the back of the bus. Heed what these folks say and you will be fine for a very very very long time. Oh and I'm male and 67, at stage 5 and doing what I need to do, as best I can.

Hello there stevielynn. Don’t know if anything I can say here will help you, but I’m hoping it can. I actually cried too, while I read your post. It brought me right back to 2009 when not one, but two different nephrologists had given me my diagnosis while I was hospitalized. And for a little while, at first, I didn’t do the right thing either because, much like you are, I was extremely sad, frustrated, and feeling very defeated by life. But I soon realized that trying to spite fate was only bringing upon myself, more misery and actually, just helping to further deteriorate my condition.

I’m in complete agreement with you on the diet plan. I miss all of my favourite foods also. It seems that almost everything, with the exception of a mere few items, had to come off of my new list of kidney-acceptable foods and beverages. And it is difficult to make such adjustments, and learning portion sizes, and which fruits and vegetables are high in sodium, potassium and phosphorus. It’s crazy. But thankfully, there are websites like DaVita, and other similar ones, that can be helpful in providing food lists, and even recipes that can assist you in making surprisingly tasty dishes. When you’re ready to, ask your doctor to refer you to a renal dietician. They can also explain things to you better. Things are not as awful as they initially appear when you receive news like ours. It’s just a matter of making a few adjustments in your life.

And please don’t feel bad or embarrassed for crying. You have every right to. I would imagine that all of us here in this forum have done our share of sobbing. Who, in our situation wouldn’t? It’s a life changer. But gratefully, we have each other here to lean on once in awhile. I’m sorry that you’re in so much distress. If there is anything you think we can help you with, we’re here. Don’t ever feel ashamed to ask anything, or even just come here to vent. We’re here to listen (or read, rather) and provide support for each other.

I will definitely be praying for you, dear. You take care of yourself and please also keep us posted on your progress. I wish you all the best. Try to keep your chin up. God bless. 🙏🙂👍

thank you

I, too, have had Stage 3 for years. Now, I am 4th Stage - 5th Stage. It goes up and down. I am on dialysis and want to stop, but can't. I tried to stop. I was okay for about 2 1/2 weeks, incorporating the right foods into my diet, then got really sick. My advice - don't give up, I haven't. I keep to a regular diet - meats, some carbs, vegs and fruits and I am doing great. I was trying to reverse my kidney disease. I think that is why I keep going from 4 to 5. I, too, did not have many people I could go to. My kids are wonderful; however, they do not have CKD, then I came across this website. This helps me cope, somewhat. Stay positive and things will work out. I don't know how religious you are but praying does help. Take care.

stevielynn
stevielynn
in reply to Lilly234

thank you and good luck on your journey

Ma'am, you ar just shocked by the news. Discovering your CFK at stage 3 and your age is a blessing compare to realizing you are in stage 5 and at the border of kidney failure. I wish my numbers were half as good as yours. I am at 10 GFR, and my Bum is 49. Creatinine approaching 4, and still fighting.

First of all, get informed from good sources like the National Kidney foundation, davita and UNOs websites. Learn what to eat, and what to avoid to keep your kidneys where they ar for as long as you can. You may want to find an app that helps you keep.a diary. Visit a renal dietitian so they can guide you and give you menus that can help you. Find a good nephrologist, and support. Be informed, and avoid stress. I was in stage 3 for many years. Following the instructions of my nephrologist all went well until stress took over me. I dropped that year like a rock until I got stable again. It is a change of life style, but that is what is going to keep you out of dyalisis. I am still out of it. You do not enter the donor lists until your GFR is less than 20. So, you are fine. Get over the shocking stage to get inform, and take control of your own health and choices since you still have time. Drink a lit of water.

stevielynn
stevielynn
in reply to hope1419

thanks for the advice and good luck to you.

I was told I had kidney disease 20 years ago and it was as if the doctor was saying it in slow motion. I couldn’t believe it! When my Dad was diagnosed in the nineteen sixties he was told to get his house in order. Fortunately, he was one of the first father/son Living donor transplants in the United States. He lived 29 extra years on my brother’s kidney (and died of heart failure at 75). Ckd is not a death sentence anymore. I have gone from stage 3 to 4 but it took 20 years and I never received any information from my doctor regarding diet. They put me on blood pressure meds and that’s it. I believe if I would have had that information back then I may not be in stage 4 now. So make the changes you need to to put less strain on your kidneys and you may never have to worry about kidney failure.Take Care!

stevielynn
stevielynn
in reply to Jamok

thank you so much, and good luck to you.

DaveThebe
DaveThebe
in reply to Jamok

Hi Jamok, if I may ask, how old are you now?

Jamok
Jamok
in reply to DaveThebe

Hi DaveThebe,

I was 37 when I was diagnosed with ckd 20 years ago.

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