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Surprise you have PKD
Late last year(2022) I was diagnosed with PKD, I was very confused as someone else in my family should have it, right? There isn't any history of PKD in my family, back to my great grandparents at least. Has anyone else seen this? Is this just a mutation that can happen, can a family member carry the mutation and pass it to a child without having PKD? Hopefully answers to come soon(Visit to Mayo).
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@jjeffries71 welcome to Mayo Clinic Connect. I have stage 4 chronic kidney disease (CKD) so I follow discussions in the Kidney & Bladder Group. I know a bit about PKD and your question caught my attention. Have you discussed your concerns with the provider that diagnosed you? More importantly how are you feeling? Have you required any treatment yet?
I have and they didn't have a really good answer. I am in stage 3 so I'm still not feeling to many of the affects yet. Just the normal pain in the flanks and sides. I have 10cm cysts on each kidney that are causing some pain, and not allowing me to sleep comfortably anymore. I started Jynarque and was a year into thing it. Had to go off as I had to have surgery(not related to pkd). I see my Nephrologist in a couple weeks and will be back on it. At Mayo next week though as they are the best. Hopefully a few better answers and possible a little relief. Thanks for reaching out.
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1 Reaction@jjeffries71 Let me add my welcome to Mayo Clinic Connect!
Here is an article from Mayo Clinic about polycystic kidney disease [PKD] that I bet you will find helpful: https://www.mayoclinic.org/diseases-conditions/polycystic-kidney-disease/symptoms-causes/syc-20352820#:~:text=Autosomal%20recessive%20polycystic%20kidney%20disease%20(ARPKD).&text=Sometimes%2C%20symptoms%20don't%20appear,chance%20of%20getting%20the%20disease.
You mentioned you have an appointment with Mayo Clinic with a nephrologist. Which campus will you be visiting? Are there any plans to address those cysts surgically?
Ginger
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2 ReactionsI will be in Rochester Minnisota campus
Me too! Same situation. Closest anyone came to having anything wrong with their kidneys was my grandfather, who had Bright’s disease, which is just an inflammation. My nephrologist had a blood test done to determine what kind of mutation I had and it turned out to be IL-4. PKD1 is the gene mutation that causes kidney failure, however PKD IL-4 seems to be cysts on the kidney itself. My kidney function is being monitored closely & so far everything seems fine. It’s a year & a half since it was discovered. So find out what kind of mutation you have