I have ckd and I’m scared to death.

[Darcornwel]

I was not aware of this condition in myself until it was in stage 4. I’m so angry that I was not told but part of me is also grateful. Something I really was wondering is if anyone actually asked anyone in their family to donate a kidney or do you think it’s too direct to ask even your sister or adult child? I really would like to know what people think on this matter.

[Bassetmommer NKF Ambassador]

There is no harm in asking as they can say no.....but what if they say yes?

[CKD2-4]

Hi. I think it’s normal to be scared when you first hear you have CKD. One thing that helped me was to learn as much as I could about CKD and how to best protect my remaining kidney function. I found the best source for this for me was on NKF’s website. My Dr. office did very little in helping me learn. Regarding asking family I put together a letter and shared it with them. I had many test but unfortunately no one was approved. I am now asking others. I remain hopeful. Good luck on your journey.

[KajNybom in reply to CKD2-4]

Agree. No one helped me either and it is very scary. Reach out to this group for support.

[orangecity41 NKF Ambassador]

I was diagnosed at CKD 3b 7+ years ago and put on an appropriate CKD diet by my Primary Doctor. It was based also on my levels of protein, potassium, phosphorus and sodium. The diet has helped me greatly. There is hope. Ask your Doctor about a CKD diet. Keep us posted on your CKD journey. This forum is a help for support , education and sharing.

[Bestsie_07 in reply to orangecity41]

I was told I have stage 3 CKD and there's nothing I can do. The drs havnt mentioned a diet for it? I'm very keen to do all I can to prevent it getting any worse? Is there a specific name for dieticians in this field?

[missdc in reply to Bestsie_07]

There are dieticians that specialize in renal diets, that's all you need to ask for. I think most are well-versed but do remember they are not doctors, just people who specialize in nutrition

[Bestsie_07 in reply to missdc]

Thank you, I will contact my GP and ask.

[orangecity41 NKF Ambassador in reply to Bestsie_07]

My Primary Doctor does blood work and monitors the CKD diet I am on.

[Bestsie_07 in reply to orangecity41]

Thats good 👍

[Akbarprm76 in reply to Bestsie_07]

Hi,

I was diagnosed with CKD in 2019. I looked at my health records and my eGFR had been in the low 60's since 2016. I asked my doctor what I need to do and she said a plant based diet and lose weight, but no details. I believe she mentioned seeing a dietician.

I did research on my own regarding diet and CKD. It lead me to a PRAL (predictable renal acid load) diet that I found on a kidney dietician's website. It's health eating with a few CKD tweaks.

Basically, there are foods that make your kidneys work harder or easier, so the majority of my diet is, of course foods that are easier on my kidneys. The diet is VERY easy to follow.

I started following the PRAL principles in 2019. I also went vegetarian and lost 50lbs slowly. My last eGFR number in July of this year was 88.

I have no idea if these kind of results are typical, hence my interest in this site. I would just suggest you learn all you can about CKD (and speak with your Dr, of course) and change behaviors if warranted. I found this approach to be well worth it and believe you will as well.

[Bestsie_07 in reply to Akbarprm76]

I will look at this diet, thank you 👍

[Akbarprm76 in reply to Bestsie_07]

The pleasure was mine.

[userotc]

We are also annoyed that my mum wasn't told she had CKD (stage 3) until my dad found out online. Its wrong by medical authorities despite various excuses and it resulted in kidney cancer and a nephrectomy several years ago..

We've managed her condition via Nutritional Therapy only (no drugs, no help from medics) and she is still in stage 3 after >14y, where we hope to keep her for many years more 🤞🤞

[missdc in reply to userotc]

Are you saying you don't have her levels of nutrients checked?

[userotc in reply to missdc]

No Im not saying that. We have her key nutrients, vitamins, minerals etc measured regularly either privately or via her nephrologist. Is that what you mean?

Tbh the only valuable assistance we've had from her medical team is doing some tests (and agreeing that prescription drugs are inappropriate/risky!) but no treatment help yet.

[missdc in reply to userotc]

yes, that was what i mean, things like phosporus and alkalinity.

I am trying ANOTHER new nephrologist and they hardly tell me anything. I learned I had ckd in 2018, when I also learned I had one kidney. Then I learned I also have renal tubular acidosis

And they have NEVER told me which symptoms to look for, only what to avoid.

It seems nephrologists are really secretive and don't want to let us manage our own health

[userotc in reply to missdc]

Yes sadly mum's nephro hasnt been as useful as we'd hope other than as mentioned above. You may find some common issues to her due to both having a single kidney.

I provided details and scientific evidence on here earlier this year by linking a blog.

[Akbarprm76 in reply to missdc]

please look at my reply to Bestsie_07 above. PRAL diet shows you what foods are easiest for your kidneys to process.

[missdc in reply to Akbarprm76]

I also have renal tubular acidosis so diet is a bit more complicated for me (no spinach or anything with med-high oxolates) ... But I will check it out and see if I can modify it. It sucks but there are a lot of fruits and vegetables to avoid

[Akbarprm76 in reply to missdc]

Hopefully there might be a way you could incorporate some of the principles. All we can do is try our best!

[Skip56]

Bonjour, il est possible qu un membre de la famille donne un rein, ou même un conjoint,cela est merveilleux si quelqu un est compatible

[S_dillow]

ASK.....dont be shy you never know what can happen..it sucks they didnt tell you sooner but you are being proactive...a good thing.im 3b and will never qualify for a transplant so if you can get a donor go for it

[PecanSandie]

I would never ask anyone in my family for a kidney but that's just me. The pressure on that person would be enormous. I would let them take the lead, and, if possible, I would get on the donor list as soon as possible.

[Live4Hope]

Hi there! Let me address this on a mental health provider level. We've been programmed at a young age to not to be a burden on others, one of the very first things we are taught is to spare everyone else's feelings but never to account for our own needs out of concern "what will others think? Am I asking too much? No, I won't because this will impact someone else" while it is noble to not want to hurt someone else, ask for more than what they can give, but it isn't up to us to decide for them that what we are asking is too much or a burden on them that is a major assumption as if we know more about the person than they do themselves. Asking is showing respect that they have the right to say no but also is allowing yourself to address your needs.

In other words: Do not decide for other people what is too much to ask, too little to ask, or what is a burden to them because that isn't something we'd be able to accurately gauge unless we ASK.

Your life is precious, your family most likely believes the same thing, so protect what you and them hold dear which is YOU.

Ask. ❤️ It's okay to have needs. Let no one else's standards be your guide to how you protect your life because at the end of the day this life is yours and you only get one.

[Epril in reply to Live4Hope]

May be easier to ask if someone would be tested to see if they could be a donor.

[Live4Hope in reply to Epril]

I think that is a reasonable median between options.

[hope1419]

Darcornwell,

Ot is frustrating and scary to find out you are sick and nobody checked or found out in your annual check ups. Unfortunately, that's not something they check. I found out I was at the border of getting dyalisis 10 years ago. I was able to regress my CDK to stage 3.5 for 4 years with diet and medicines under a nephrologist. Then, I was told I needed to be on the list. I got my transplant 18 months ago. Take Live4hope advise on your mental health. First you need to process your new reality. For.me, it was like a grieving process: denial, panic, until I got to acceptance. I learned as much as I could about my disease and what caused it. I modified my diet and some habits, I followed my dr. Instructions, but questioned when I needed.

First you need to know what kind of CDK you have. Learn as much as you can about how to stop it if possible. Then get worked up in the UNOs transplant list so the drs determine if you are qualified for a transplant. Also learn what a person needs to be your donor.

I would also read stories, questions, and answers in this site. That was very helpful to me.

About asking your family, I think you need to share your story first. (Check the Nat. KIdney foundation link) Family usually volunteer without asking directly. I found asking directly was ineffective because it put people in the spot. So, I used a news article in my local newspaper, providing my information and my transplant center info. They could call without me knowing. That worked. It is more frustrating when someone says yes in the spur of the moment, and then change their minds because they didn't consult with their family or so.

By all means ask when y[u are ready, and do it the right way, so you don't get hurt when you are so vulnerable.

Here are some resources:

kidneyfund.org

kidney.org/kidney-topics/ge...

This is one of my posts when I was having doubts.

healthunlocked.com/nkf-kidn... This is the article that got me my living donor.

hubcityspokes.com/news-peta...

Hope you find your way to peace on your new situation. God always help us out of tough situations!

[Darlenia]

I completely agree with Hope's sensitive and sensible advice regarding how to approach family and friends with you medical situation and your interest in receiving a transplant. It's completely unnecessary to directly ask anyone to donate their kidney, in my opinion. All one has to do is simply update everyone (preferably in person) and mention that you hope to get on the transplant list, find a kidney, and anything they can contribute or do with that would be a tremendous blessing. One will immediately see the answers on their faces and reactions. In our situation, my adult children watched, horrified, at their dad's spiral into kidney loss and dialysis. So did a number of our friends. They are, without question, still terrified today that the same outcome may be theirs down the road. Subsequently, we also decided to consider and accept a deceased donor kidney that had an issue or a questionable history to speed up the process. These are kidneys are often "cleaned up" or extensively checked - kidneys that would have discarded earlier. The call came very quickly - only a few months later. His gift continues to perform beautifully 3+ years later.

Throughout one has to be exceptionally mindful of processes, timelines, and choice of center. One can only be considered for the transplant list when one's eGFR reaches 20 or less. If one starts the process then and gets on the transplant early, one may actually get a "preemptive transplant" and skip dialysis altogether. That's a great outcome - important to remember. Getting an appointment at a transplant center may require a referral from your nephrologist. All transplant center will require comprehensive medical tests, including behavioral judgements on one's "compliancy" on following instructions, etc. Some pass the evaluation process, many do not. Comprehensive testing also is done on living donors and decisions (go or no-go) are made. The other very important factor in all of this is the transplant center itself - some have long wait times others have short wait times. In our area, those with the shorter waits generally have very specialized staffs and labs to "reclaim" kidneys, etc. - hence, more supply. They are not equal. This is a fantastic site that lists outcomes for transplant centers across the US: srtr.org/transplant-centers...

I hope this gives you a basic roadmap on how you can be proactive in monitoring your situation and determining the routes to take. I'm crossing my fingers that you can stay where you're at for a very long time - simply enjoying life w/o the need for dialysis or transplant. Do you know the reason why your kidneys are struggling? Sometimes, with acute injuries or illnesses, they can recover. So ask about recovery possibilities. But you're also a very smart and wise person to take a good look at the geography and ask these things now. It's good to educate yourself - being prepared and knowledgeable smooths the road ahead and gives one peace. Wish we had done more of that in our own journey. Stay in touch!

[WildIris]

I completely understand you wanting to have a kidney lined up if the worst case happens. There are many steps you can take to protect your kidneys though, like being careful about your blood pressure and general health, what drugs you take, drinking plenty of water, looking at your diet.

Some foods and drugs are particularly hard on the kidneys. Asking family for a kidney was never an option for me, so, no insights there. Do a bunch of research when you feel scared, make some kidney-healthy changes, you'll adjust emotionally in time.

Also check out Farxiga, if your doctor didn't mention it, its a fairly new drug that can improve your kidney function, as I understand it and it might be preferable to being on anti-rejection drugs the rest of your life after a transplant

I, personally, was at stage 4 for a year or so, but I've been on a strict kidney-friendly diet for 3 or 4 years, and, though its apparently unusual, I did go from stage 4 to fairly normal function at least for now. (The diet also helped with a lot of other chronic health problems, high BP, lupus, too much ibuprofen for achy joints, overweight, that sort of thing.)

[WYOAnne NKF Ambassador]

When you need a transplant, it is something you need to tell EVERYONE!

My pastor at my church put it in the bulletin. I come from a large family and my brother was always going to be my donor, but he is 7 years older than me and developed high BP. So, he was ruled out. Two of my cousins were a match, but both also got ruled out due to high BP.

I was in line at the grocery store and I was talking with a friend that was asking me how I was feeling. The man behind me excused himself for hearing our conversation. We actually went to have coffee and talk. He went to get tested, and wasn't a match for me, but wound up being a living donor for someone else in my area.

I heard the story of a man that put a sign in his front yard of his need for a kidney transplant. He actually got someone to be his HERO getting his transplant within a couple of months.

I personally know a man that wore a t-shirt to Disney that said he needed a kidney. He also got his transplant from someone that wanted to be his ANGEL.

So, don't be afraid to tell your story over and over again. You never know who will come forward and be your donor.

Me, I am 25 years post kidney transplant. My deceased donor was a 16 year old boy that was killed in a car accident. He is my HERO! My creatinine continues to be 0.9.

Best of luck to you! Keep us posted...

[Downinil]

After requesting my medical records I noticed my labs with GFR only 57. That is how I found out. It’s a shame they don’t let us know so we can get on a kidney friendly diet. Advocate for yourself, Always!

[Akbarprm76 in reply to Downinil]

I have CKD as well. please check out the PRAL diet. it stands for Predictive Renal Acid Load. I am in no way associated with any of the websites espousing PRAL . I just found the info online and have been following the principles for almost 5 years. a marked improvement on my eGFR number.

[Downinil in reply to Akbarprm76]

Thanks

[Blackknight1989]

I’ve been stage 4 since 1996, not a death sentence and not tremendously life altering. I was 29 at diagnosis lived in stage 4 for 29 years, I’m 58 today eGFR 16-22….it can be done and you can have a relatively normal life…without the need of transplant…of course it depends on the underlying cause and I realize some underlying causes result in continued decline and that is different but for those who can if you take care of your body it is possible to live a long and relatively normal life despite the stage!