Bad luck ! Newly Diagnosed

[BlessedOne_1]

I knew it was coming and finally I made up my mind and went for a test and found out that I have multiple cysts on my both kidneys. I am 38 year old. As of now I dont have any problems. No protein/bllod in urine. GFR is perfectly fine, creatinine is normal. I do not know what stage I am in.

I am clueless, hopeless and Just looking for a miracle which is not gonna happen.

Please help me get started. How I can look after my kidneys and prolong the kidney life.

P.S. I am so happy to see lot of posts where the PKD was diagnosed in their 70s which is bad too but at least they lived major part of there life happily and stress free.

[sehaj]

Hello

First, let's take a deep breath. What do you mean, you knew it was coming? Do you have a family history of kidney cysts?

Now look at the positives: Normal labs

Did they say your cysts were limited to kidneys, or were they in the liver too? They must have done imaging to stage and explain the type, correct? Are they big or small? Fluid-filled or old-blood-filled? Do you have any symptoms?

Most recommendations are to eat food to lessen BP so you don't develop CKD, but not so much on a particular diet. Maintaining a healthy lifestyle and regular follow-up with a urologist/nephrologist is highly recommended.

[BlessedOne_1 in reply to sehaj]

Thanks for responding. Yes, I am second generation in my family with Kidney disease. Lab results show I have medium sized fluid filled cysts limited only to kidneys as of now. I don't feel anything as of now.

I have started working on diet. I don't have much weight to lose. Being a vegetarian I eat too much carbs, I am trying to reduce that by adding more proteins. I haved reduce salt and stopped processed sugar to great extent. I walk/jog 10k steps and started picking up basic yoga.

Hope the changes will have some effect.

[Beachgirl32]

if polycystic kidney is in your family and you have multiple cyst could be polycystic kidney but let doctor make diagnosis polycystic kidney run in my family I have it do does my brothers and my mom my sister does not but they found three cyst in her kidneys but they were not cyst same as polycystic kidney . I knew I had it in my 30s but I kept a handle on it watching my blood pressure that very important. Watch diet if you are a soda drinker give it up very bad for the cyst . Excercise very important I didn’t go on dialysis until this last year at 67.i have travel a lot my disease I didn’t let control me not saying I didn’t feel it sometimes but I have lots of back pain my brother never had back pain so the same disease can effect people differnt .

[BlessedOne_1 in reply to Beachgirl32]

Thanks for responding. It gives me lot of hope that you were able to keep dialysis at bay for such long time. I have noted your suggestions and will work on that. Would love to know more if anything in particular that helps slow the progression. Any particular diet you followed?

[barbara55109]

If your creatine and GFR are fine, then you don't have kidney disease.

[KidneyCoach NKF Ambassador in reply to barbara55109]

BlessedOne_1, We don't diagnose here. I had a normal creatinine and eGFR, potassium, phosphorus, calcium, protein, hemoglobin etc all was normal. I had been diagnosed with PKD. So, yeah I had CKD. Please have a conversation with a doctor. Blessings

[barbara55109 in reply to KidneyCoach]

Sorry, I thought they were different. I didn't know pkd was a type of ckd. This week we have had so many self diagnosed people on the group. It was starting to drive me nuts!

[BlessedOne_1]

Beachgirl32 barbara55109 KidneyCoach sehaj Thank you all for your kind words and suggestions. May be I was not clear enough. I have completed all tests as suggested by my Nephrologist and it is confirmed post diagnosis that I have ADPKD.

[ROCKERMAN]

I had my first cyst when I was a teenager bud didn't know it was PKD running in the family till my 40's. Currently at Hemo at age 53. Talking to my new doctor(nephrologist) she told me about the importance and relation of high blood pressure with this type of disease. So if you take care of your BP, have a healthy diet and lifestyle you may extend the life of your kidneys. Still, every case is different because we are different. Hope this helps!!

[BlessedOne_1 in reply to ROCKERMAN]

Thanks for sharing ROCKERMAN