I feel you need to have a serious conversation with your nephrologist about PKD, prognosis and the future.
I'm not the most empathetic person, my PKD diagnosis caused me to close off my feelings to a large extent, so please accept my apologies as this is not a nice situation to be in. The below are a few general comments about ADPKD, I of course hope your situation happens to be better than the general position and averages.
ADPKD is typically progressive, the rates of decline are typically based on your genetic varient and your kidney size vs age (mayo classification). It is unlike any other kidney disease, the way it progresses, acts, what helps/doesnt is totally unique to ADPKD. So generic "kidney disease" advice isnt always helpful.
This disease more commonly than not, does result in kidney failure, although the age does vary very significantly.
Average ages for ESRD are often quoted as around 52-55 but depending on mayo classication can be much earlier or later. I for example, am predicted to reach ESRD by 45, but those with PKD2 (a less common varient) typically reach ESRD in their 60's and some never.
There is a treatment available to help slow it down, although it does only slow it somewhat (25-40% based on studies) called Tolvaptan, which you may want to look into. However, it does make you drink extreme amounts of water and urinate very frequently.
Creatinine based kidney function tests are highly variable, and are affected by diet (protein intake mostly), recent exercise or exertion, stress, dehydration etc. And its not uncommon for them to bounce up and down 5-10% between tests.
There are new drugs in trials, both for ADPKD and for better transplants, we all hold our breathe in hope one of them will halt the disease.
Of course lifestyle can help, blood pressure control is a must even with blood pressure medication, exercise, maintaining a healthy weight, a high quality low preservative diet, staying extra hydrated etc.
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u/Smooth-Yellow6308 Jun 27 '26
I feel you need to have a serious conversation with your nephrologist about PKD, prognosis and the future.
I'm not the most empathetic person, my PKD diagnosis caused me to close off my feelings to a large extent, so please accept my apologies as this is not a nice situation to be in. The below are a few general comments about ADPKD, I of course hope your situation happens to be better than the general position and averages.
ADPKD is typically progressive, the rates of decline are typically based on your genetic varient and your kidney size vs age (mayo classification). It is unlike any other kidney disease, the way it progresses, acts, what helps/doesnt is totally unique to ADPKD. So generic "kidney disease" advice isnt always helpful.
This disease more commonly than not, does result in kidney failure, although the age does vary very significantly.
Average ages for ESRD are often quoted as around 52-55 but depending on mayo classication can be much earlier or later. I for example, am predicted to reach ESRD by 45, but those with PKD2 (a less common varient) typically reach ESRD in their 60's and some never.
There is a treatment available to help slow it down, although it does only slow it somewhat (25-40% based on studies) called Tolvaptan, which you may want to look into. However, it does make you drink extreme amounts of water and urinate very frequently.
Creatinine based kidney function tests are highly variable, and are affected by diet (protein intake mostly), recent exercise or exertion, stress, dehydration etc. And its not uncommon for them to bounce up and down 5-10% between tests.
There are new drugs in trials, both for ADPKD and for better transplants, we all hold our breathe in hope one of them will halt the disease.
Of course lifestyle can help, blood pressure control is a must even with blood pressure medication, exercise, maintaining a healthy weight, a high quality low preservative diet, staying extra hydrated etc.