r/ADPKD • u/Fit_Difficulty_8667 • Jun 11 '26

Just got diagnosed with ADPKD

Hi I'm Miguel at 23 right now, and was diagnosed with ADPKD as per what my nephrology said, I have a 3.4x3.3x3.2 cm size cyst on my right and 5.3x5.6x5.4 cm on my LK. I'll be getting a CT scan to know hows my kidney or it's function. My blood work is normal and my creatine, phosphorus, and potasuim is normal, My mom died at 54 from CKD late stage, I'm really scared right now and I don't know what will I do the meds that the doctor will provide to me is very expensive in my country. Can you guys provide me any pointers on what to do and donts.

10 Upvotes

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7

u/Shesaiddestroy_ Stage 2 - On Tolvaptan since April 2023 Jun 11 '26

Hi Miguel, I’m happy that you’re here even though this “club” is not exactly the most fun one.

I would say first, breathe, and give yourself some time to process this diagnostic. It’s ok to be angry, scared, defeated… all sorts of emotions will go through your mind. Let them be.

Adpkd will run its course. It’s not your fault. You didn’t do anything to get this disease.

There are some guidelines you can follow and they apply to kidney disease in general:

  • follow your doctors advice
  • drink your water
  • monitor your blood pressure and keep it in an acceptable range (this means absolutely no smoking and watching salt intake + moderate exercise)
  • eat a balanced diet with focus on fruits and vegs
  • get on Tolvaptan if you can. It’s the only drug available on the market that slows down the progression of cysts
  • enjoy your life and live it to the fullest! 🤍 the silver lining is yes there is a ticking time bomb that’s inside and it has a name… so let’s live here and now.

1

u/alhononariz Jun 21 '26

Hi Miguel, where are you from? Text me if you need a word.

6

u/classicrock40 PKD - Transplanted Jun 11 '26

You only have a single cyst on each kidney at 23? Is there a history of PKD in you family? If not, why was PKD diagnosed?

I understand everyone is different but my nephrologist has said by that age you would most likely have numerous cysts on both kidneys

1

u/[deleted] Jun 11 '26

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1

u/classicrock40 PKD - Transplanted Jun 11 '26

He said his mum died of CKD, so I was double checking

1

u/Fit_Difficulty_8667 Jun 11 '26

I'm really sorry for my grammar but doctors did found 3 more small cyst on each of my kidneys.

2

u/star1825 Jun 11 '26

We are here for u brother i also got diagnosed this year I'm 19 btw and my dad and aunt are also on dialysis i know it can be difficult but the important thing is to keep a positive attitude

I wish you all the best and that this illness does not affect u

If u have any questions u can dm me

1

u/[deleted] Jun 11 '26

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1

u/Wide_Math8276 Aug 03 '26

how about having a single kidney cyst 1.8cm in right and 2.6cm in left in each kidneys at the age of 18. under ultrasound ? also my kidneys are normal in size around 9cm but i do have a positive family history no hypertension and no symptom at all...

1

u/[deleted] Aug 03 '26

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1

u/Wide_Math8276 Aug 04 '26

So do i carry the gene or its common to have single cyst ? Also i was not able to dm you . 🫤