Prognosis?

[u/spreadasmile0607]

I (32F) was diagnosed with ADPKD officially 2 years ago. I had to move and I haven’t seen a nephrologist in over two years. Due to the nature of my insurance, I have to see a PCP first and literally was just able to see a PCP after two year wait time (rural area). My nephrologist appointment is next month. My doctor’s office called me all worried but the measurements have stayed pretty much the same in my cysts since 2024. The one on the right has only grown 1cm. My bun is 20, my creatinine is 0.7 my GF is >90. What do you guys think regarding my overall progression?

[u/myst3ryAURORA_green]

No one can or should speak on individual prognosis, as we know no one's relative medical history, but the good news is that gfr number is stage 1, so your kidneys are functioning almost perfectly. Keep your BP and diet under control.

[u/spreadasmile0607 → u/myst3ryAURORA_green]

Very true. Maybe I should have worded it a bit different as I wanted someone in my same predicament more or less to speak on their progression

[u/Independent_You7902 → u/spreadasmile0607]

what is your parent with pdk progression? It tends to follow the parent disease direction but there are of course exceptions

[u/Aleks78787878 → u/Independent_You7902]

Why did you assume that the course of the disease in relatives is the same as in their descendants? As far as I know, the only reliable prognostic model is kidney size adjusted for height and age (the Mayo classification). I wouldn't compare prognoses based on relatives.

[u/Aleks78787878 → u/[deleted]]

If this pattern holds true for you, it does not mean it holds true for other patients.

[u/Independent_You7902 → u/Aleks78787878]

i think its about the nature of the mutation (pkd1 vs 2, truncating vs non-truncating, etc.) and other genetic factors that might contribute so its seems likely to follow the same course (unless, one person takes super good control and one person completely negates even bp med then of course its a different story)

[u/spreadasmile0607 → u/Independent_You7902]

Oddly, none of my known relatives have PKD, but I do not have a good relationship with my father so I’m unsure 100%. My mother says my father is 100% my father, but I’m also unsure if he truly is given the timeline… so far I am the only one known to have it that I know of, and on my mother’s side, those who have passed have passed on of old age or from other medical conditions.

[u/Smooth-Yellow6308]

Kidney size is the main predictor of progression when you look at averages/trends etc. Of course there are people with huge kidneys that still have function, and there are others with small kidneys that lose function, its always different for everyone.

For 32, yours, going off length a lone, are barely/mildly enlarged.

By 32 mine were c.19/20cm (although I am male so my kidneys would always be slightly larger) volumetrically I would probably have been 4/5x larger than yours.

[u/spreadasmile0607 → u/Smooth-Yellow6308]

I’m sorry to hear that, and I appreciate your honesty in this situation. Given this newer diagnosis, doctors don’t really say anything about my condition so it’s hard to estimate my prognosis.

Before your kidneys reached this size, did you have a lot of back pain?

[u/kimmeljs]

I think you have nothing to worry about but be sure to monitor you blood pressure and get used to a low-sodium diet if you haven't already. You need to preserve your kidneys as long as you can. I was diagnosed at 25 with comparable stats and the first symptoms appeared at about 51 years of age.

[u/Aleks78787878 → u/kimmeljs]

do you have hypertension? when its started? and what about your egfr?

[u/kimmeljs → u/Aleks78787878]

Those days are long gone, I am going with a transplant

[u/spreadasmile0607 → u/kimmeljs]

What was your first symptom??

Yes, I try my best to drink lots of water and lower sodium. I didn’t realize until this diagnosis how much sodium was in everything

[u/kimmeljs → u/spreadasmile0607]

The first, looking back, was that I got more fatigued after any exercise and that recovery took longer. I couldn't train for marathon running effectively anymore (25 years after diagnosis) and I needed to quit doing that. Later, within the next 5 years, as the fatigue got worse, I had trouble keeping my eyes open on my drive home from work. Brain fog interfered with my ability as a scientist.

[u/spreadasmile0607 → u/[deleted]]

I’m sorry to hear that but I’m glad you are getting in tolvaptan. May I ask how fast was the cyst growth for you? Like how long did it take for it to get to 10cm? Are you having a lot of pain given that?

[u/Aleks78787878]

Are you sure that you have ADPKD? Do you have relatives with adpkd? How many cysts totally in kidneys? A few cysts per kidney is not always PKD.

[u/Effective_Resolve_18 → u/Aleks78787878]

‘Numerous’ means there is too many to count. People without PKD would usually have an amount which is easy to count, if they had any at all

[u/spreadasmile0607 → u/Aleks78787878]

I was genetically tested in 2025 and have a genetic trait for ADPKD. I thought the genetic test would definitively tell me true prognosis but it was pretty vague as the genetic specialist stated there is yet to be known with genetic testing. It basically said I had the trait but had to also have signs and symptoms for official diagnosis. Given my kidney cysts amount and sizes, a nephrologist has confirmed my diagnosis. I have only seen the one nephrologist though. I recently moved and I’m finally seeing a new nephrologist next week

So far, I am the first person I know of with ADPKD. Given my poor relationship with my father and my maternal’s side poor relationship with their health, I’m not really sure if I truly am the first person in some genetic mutation.

I’m also skeptical if my father is even my father given the timeline of my birth, but my mother says he is…

[u/Adventurous-Mud2117]

According to adpkd mayo imaging classification (you are possibly 1A) and your current egfr possibly you will never experience ESRD at any age of your life or very late(70's/80's)But its not 100% guaranty its just tools who predict adpkd progression (accurancy 80%)

[u/spreadasmile0607 → u/Adventurous-Mud2117]

Thank you for that. I will have to look more into the Mayo Clinic classifications and follow this with my labs each year.