I'm 27, it's suspected that I have CKD 2. While I still haven't been diagnosed all the test point to this diagnosis. Hearing the news, I started thinking I wouldn't make it to my 40s. I've researched and researched only to have more questions. Any help would be appreciated because I want to fight this disease.
1. I've read conflicting research on the disease progression. Some say ckd doesn't always progress and others say it is inevitable. What has been everyone's experience?
2. How possible is remission at my age? Has anyone been diagnosed young and still living past their 60s?
3. I work with a nutritionist, I pushed for one, and she told me cheat days every now and then is good for me and wouldn't impact my kidney health overall as long as I stay strict more than 90 percent of the time. Is this reasonable? I love food and used it as a way to stay disciplined during my weight loss journey before all this kidney trouble.
4. What treatments have helped you guys? Has anyone stayed in the early stages for decades?
I know CKD is different for everyone but I am hoping that what I learn here will give me hope for a future with my fiance. I want to be a dad one day but I am afraid that I won't live long enough to be in my kid's life and that scares me from becoming one.
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Live4Hope
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We're all afraid at diagnosis. Take a deep breath! There's lots you can do. Go to kidney.org and begin your education. Learn about the renal diet; continue exercise; drink lots of water and smile!
I'm pretty well versed in the disease at this point but I can't seem to find more specifics on treatment results. Will that link supply that for me? Thanks for the comment by the way.
ive been 3b since 2019,if that helps.you can go on living a good life with dietary and lifestyle changes.yes the disease is progressive but can be slowed down.look on this forum.there are people more experienced than me that will gladly talk to you.dont worry about time,live your life with your children
vitamin d,b12,change in diet and exercise.im a type 2 diabetic so there was a bit of tap dancing round that.i also have chronic heart failure so they monitor me pretty good.im holding steady at 3b so far
You're going through so much and yet you're still pressing on. I'm so happy to have been able to read your comment. You and so many people on here is giving me hope again.
hope is a strong rope....and impossible to kill.take it one day at a time and only go to reputable websites for info.there are a lot of snake oil salesmen out there hawking cures for ckd at thousands of dollars but theyre full of bs.keep at it
Hi there! How was the diagnosis established? Is it based on creatinine alone? Are you muscular? Do you consume a lot of protein? Do you work out?
I am a pretty muscular 33 yo female. In 2020 my labs showed slightly elevated creatinine, enough to put me at stage 2 CKD. I am a doctor myself, so I did not stop there. Following more labs (cystatin C), urine samples, ultrasounds and 24-hour urine collection it was established my kidneys work perfectly! I was doing intermittent fasting back then, working out quite a bit, so probably it was it. Creatinine is cheap but a very unreliable kidney marker. Get cystatin C done!
Hi there. :)I did have an ultra sound, showed mild echogenic in my right kidney.
I did a random UACR and it was 61 (I was a little sick that morning but I haven't seen enough evidence to suggest that would impact the results) albumine was within range but creatinine was high.
I'm muscular (mostly lean fat these days) and was building more muscle while losing weight. I was 323 I'm 249 right now.
I have follow up blood work in a few weeks and have pushed for referrals so I'll be seeing a nephrologist in the next month.
I did used to consume a good amount of protein, about 80-100 grams a day sometimes more.
My GP thought it was strange that only one kidney was echogenic but both seemed normal otherwise which is why he agreed with me on a nephrologist referral.
I'm managing blood pressure, after losing the weight, I started lisnopril as well.
Hope I have enough information. Thanks for responding!
I have learned its a disease you can live with (if you have it of course), you just need to tweak a few bits - in my case, no more ibuprofen or salt in my food, less red meat, more veg, no more cola, no caffiene, and keeping my blood pressure under control. Mines not progressed over the 4 years since I got my shock diagnosis and I still don't know why I have CKD (but then I live in the UK and its all managed by yearly checkups with a nurse - no referrals to dietitians or renal experts offered).It is a shock but you'll be ok 😊
In answer to your question 4, my mum has been stage 3 ckd for ~14 years with current age 68 (including before/after a nephrectomy). She has followed a personalised Nutritional Therapy (NT) protocol.
I can supply a link which states that CKD3 should not regress, with treatment. The treatment is not described but we believe NT is key.
Note "With treatment and healthy life changes, many people in Stage 3 do not move to Stage 4 or Stage 5" in "Stage 3 of CKD (eGFR between 30 and 59)" section.
Noting your comment on blood pressure, my mum was also able to wean off bisoprolol years ago soon after starting her NT protocol. 🤞🤞
If youre interested to know more about my mum's personal ckd journey and (rightly) find related nutrition interesting, check out the blog I posted on here 2-3m ago. Alternatively Google oc nutrihealth website (top RHS on home page).
Some past NT details are indicated in the blog but they are personalised, as all protocols should be so different ones may be better for you. The blog indicates new, current additions specific to mum's case which is currently quite different to yours.
A good, qualified Nutritional Therapist specialising in areas such as kidney should base the protocol based on individual details specific to the patient.
your blood test will show if you have ckd they look at lots of things some ckd can be from medicine like taking to much ibuprofen that on some people it could be from diabetes and other stuff my is from an inherited disease polycystic kidney nothing I did but I didn’t start dialysis until I was 67 now I’m 68 my brother is 71 he has had a transplant so yes you can live until you are older
Heads up Live4Hope about the CKD diagnosis! Hey, at least you caught it early! Some folks don't find out until things are way further along. This is your chance to be proactive and take charge of your health. True story, some doctors might wait until later to raise alarms, but being proactive can seriously make a difference in the long run. Unfortunately some people don’t find out until end stage 😊
My first husband was diagnosed with CKD (minimal change disease) at age 39. We had a child when he was 43. He started dialysis when she was 2 and had 2 transplants and lived another 17 years. He had other health issues and decided to quit dialysis when his second kidney failed, but he had a very large influence in his child’s life. I think having a child is what really kept him going.
Life happens for us all. We can’t predict the future. If you are in a place to be a dad, give it your all as long as you can. ❤️
I was diagnosed at a later stage CKD3 at 52 had a renal transplant this September will be my 3rd year.. no dialysis, I was blessed by a young gal (34 y.o.) in our church who heard about my failure and asked to be tested, she was a perfect match.. First, I'd suggest to get a core or prayer warriors to be faithful to.pray for you.
Get connected with a nephrologist to help work on prevention management/labs.
Two sites I found most helpful to review, recipes and advice were: Divita.org, Kidney.org
I'd study the charts in the nephrologist office of foods high in phosphorus, potassium and try to avoid those foods or only rarely.. those are hard for the kidneys.
I tolerated fluids so I'd drink lots of water to help keep the hydration up.
Avoid sodas/drinks that are dark (root beer is the only dark soda that does not contain a coloring that has phosphorous in. Clear sodas or gingerale is ok as well. I got a diet cranberry juice made by ocean spray they have various mixes. I think they are strong so I diluted it 1/3 juice to 2/3 water found it very refreshing.
Stay healthy, found my Vitamin D was quite low started taking that at docs recommendation that boosts immune system. If I think of other tips I will add them
Wish you well,
Kay
P.S. I'm a nurse so I'm always looking for what's ahead for disease processes. These are still in research phases but there is a group working on an artificial kidney. No donor, no antirejection meds after initial procedure the only thing they anticipate being needed is a filter that can be changed in output. Surgery.
Your comment is greatly appreciated! I will review your tips often. Any advice for cheat meals? I mostly cook at home now anyway but sometimes I want fried chicken while out with my friends or should I avoid cheat meals all together? I used to do 1 a week then switched to 1 every other week.
It sounds like you are already practicing moderation.. check with your doc on cheat meals, they are seeing the whole picture. Or ask the question on kidney.org, they have trained professionals they can ask.
I thought of a couple of other things..
You don't want to eat large amounts of protein, because the protein can be hard on the kidneys, again moderation. Amounts should be listed on the sites I sent.
Also, avoid drug groups they call NSADS, they can damage a kidney further..like ibuprofen, Naprosyn, advil etc.
Any new meds prescribed make certain they are safe with kidney disease.. you are your best advocate..
You should avoid contrast materials for special IV testing unless they are safe with kidney disease..
I was diagnosed with eGFR in the 50s, 3 or 4 years ago. I changed to a strict kidney diet fairly quickly, lost about 80 pounds over 2 years, started exercising, and my eGFR seems to be going up, which is not supposed to happen. ">=70" is all the lab report says now, and creatinine of .80. Several chronic problems also got better on the diet, including lupus which put odd antibodies in my blood so my type O blood tested as type B. Just saying, I don't know what's going on, but I feel well, one day at a time.
I've heard that when people put less strain on the kidneys functioning can return to some degree. New research has discovered improvement can happen at any stage. Thanks for your post, it gives me hope.
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