I would be really grateful if you share your experience.
5 years ago I found out that my right kidney is ectopic (in my pelvis) and smaller than normal (9.8cm). Ive been following my creatinine level for 3 years and its been fluctuating between 80 and 93umol/l. That puts me in stage 2 ckd with egfr 72ml/min.
Im really scared and dont know what to expect..I couldnt fine a reliable physician so far...one told me that I would start dyalisis in 10 years or sooner. I just got my baby girl and that makes me feel really anxious and uncertain for our future.
Could you share your experience? For how long have you stayed in stage2 ? Is it possible to stay there for decades?
Thank you in advance!
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Didididi
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As another member rightly corrected me on, you don't necessarily have chronic kidney disease just because your eGFR is down. Reduced eGFR is often a sign of ongoing (chronic) kidney disease and is the blunt instrument used in giving a CKD diagnosis. But not in all cases.
For example, a person can have a perfectly functioning kidney, having lost their other kidney to an accident. The remaining kidney isn't diseased therefore the person cannot be said to have CKD - even though they've reduced function and lowered eGFR due to a kidney missing.
The GFR is the rate at which your kidneys filter blood and your kidney function, at eGFR 72 is plenty for your needs (think people who donate a kidney and who get along fine - you've more than plenty of function with one kidney). Assuming your kidneys aren't diseased, there is no reason why they'll decline (other than natural age related decline - which won't necessarily leave you in need either). It sounds like one of your kidneys has reduced function (the ectopic one) and the other one is healthy.
So, more probably than not, you've nothing to worry about. But you do need a decent nephrologist to assess your status and inform you correctly.
Having said all that, it probably would do no harm to be aware of how to treat your kidneys kindly - damage can be caused by various things like high BP, NSAID medications (e.g. ibuprofen painkillers/anti inflammatory meds, dehydration. etc.
I'll add that make sure you have a healthy life style, eating right, exercise, no smoking and try to limit stress in your life. You might want to edge toward a vegan/vegetarian life style too.
Agreed. Didididi wouldn't want to be ignoring the fact that they've somewhat reduced function by piling abuse onto their kidneys. Kidney friendly without going overboard about it.
Congratulations on your baby girl! Your ectopic kidney has been that way since you were born and functions well. I wouldn't worry about anything that may or probably won't happen 10 years from now.
A normal kidney size for a female is 9cm - 13cm. You are still within normal range. Mine is 8cm and my egfr went down to 28 still not worried about 10 years down the road. There is always transplant or dialysis. Nothing is so grim that you need to worry at this point. My major worry was not finding cute shoes to wear when my kidneys caused my feet to swell. I did find some cute ones on DSW, LOL!!!
Even if your one kidney stopped functioning you can have it removed and live a perfectly normal life with one kidney as people do when they donate a kidney for a transplant or receive a transplant when they have 2 failed kidneys.
Since your kidney issue is a birth defect, not diseased from a comorbid condition like diabetes, high blood pressure or an autoimmune disease, it should be less of a concern. I would try to get in with a Nephrologist to evaluate you and set your mind at ease.
After you see a Neph. you can put all your focus on enjoying a happy life with your little girl. You could probably ask your OB/GYN to give you a referral to a Neph.
Thank you for the wonderful answer, Sophie! (My babys name is Sophia haha)I just contacted my OB/GYN and he will reffer me for nephrologist-consultation.
I would need help to establish a new lifestyle, although I already follow basic health rules.
Take a deep breath and don’t panic! I was diagnosed with Polycystic Kidney Disease at age 24 and had a transplant at age 49. It took over 25 years for me to get to the point that I needed a new kidney. The best piece of advise that I would be able to give you is to keep all doctors appointments and check your kidney function yearly. Find a good doctor. Most importantly, take care of yourself and enjoy your baby!!
Your story sounds encouriging! Im glad taht youre now doing well. I believe that at that point I need to learn how to enjoy thing now and stop overthinking...cause mental health is also important after allBest of luck
You are actually in a really good place. Take good care of yourself with your diet. Don't drink, smoke, eat a plant based diet. And you will live a long happy life. Let your concern drive you becuase as soon as you forget to be concerned, that is when your GFR will drop even further. Good you found out now while you can keep the numbers up.
I was diagnosed at 30, and had a transplant at 66. I did not undergo dialysis. There are those who undergo dialysis while waiting for a kidney donor. That should add more years.
When I was first diagnosed, the Urologist said I could have "3 to 30 years". That was a shock that put me on depression for 6 months. After which I decided to get hold of my own destiny
1. Assembled a medical team lead by a Nephrologist.
2. Started peparing mentally, physically, financially and different lifestyle.
3. Prepared short term, mid term plans and a bucket list.
Thank you for your answer! I Think Im still at that shock-phase, but I will try to do my best and stay positive ..cause I cant talk about kidneys all the time Good luck
One thing I did not see mentioned, in addition to all the good advice given, is that there is much being done regarding artificial kidneys. Even if all else fails, and I doubt that will happen, artificial kidneys are on the horizon,
Hello Didididi, Having read all the above replies, I would like to tell you about my experience. I was told 6 years ago, at age 74, that I had age-related Chronic Kidney Disease, stage 3. A scan showed that one kidney was normal size and the other small and shrivelled. It was also thought that I had been born that way! My brother also has the same condition, but has both kidneys smaller than normal. He is 77 and I am now 80 years old, having had two children, both weighing more than the average baby.In the UK we are not often given our GFR figures because they are always fluctuating and it is thought to cause unnecessary anxiety to worry about them, but we have both remained stable since diagnosis. Dietary advice is non-specific for him, and I have been told to watch my potassium intake. Otherwise we try and eat a normal healthy diet. Hope this information helps, with best wishes for you and your lovely new baby, Sophia - Curleytop1
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