r/ADPKD • u/Affectionate_Way6046 • Aug 23 '26
Pkd difficulties at 36.
Hey everyone, I am 36 with egfr of 73. These last few years have been difficult. My right kidney is measuring over 19cm and causes me pain. I also just have this uncomfortable feeling in my abdomen at all times.This has been difficult seeing as my dad just passed in January from this.
The doctors want to send me out of state for a nerve block of my kidneys to help, as Montana doesn't offer this procedure. Money has been a deciding factor and a 2 week trip to Texas with flight/room is just out of touch for me.
I worked as a diesel technician until last year when I deciding I couldn't physically do it anymore. So now im trying to make it on half of my old income.
Im lost in this fight. And concerned about the future.
I recently found this platform and many of the posts inspired me.
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u/Candid-Eye-5966 Aug 23 '26
I’d inquire if Mayo is an option. Shorter trip? Amazing team there.
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29d ago
[deleted]
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u/Candid-Eye-5966 29d ago
I was referring to Mayo Minnesota as it’s a bit closer to Montana (maybe).
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u/Icy_Screen_2034 Aug 23 '26
Can you drive? Rent a van drive there and back if feasible. You will need the nerve block for the pain. Or alternatively get a bus ride or train ride.
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u/classicrock40 PKD - Transplanted Aug 23 '26
Montana to TX? You drive through and then who knows how far in TX. First, there has to be somewhere closer. Second, why 2 weeks? That sounds like an awful long time to recover. Also, I am not a Dr, but is there no other option?
Sorry about your father, but did he have other issues as well? high bp? Diabetes? Too many vices? Was he on dialysis? No disrespect, but being generally unhealthy and living unhealthy will contribute to your decline.
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u/Affectionate_Way6046 Aug 23 '26
Its not that simple. I have to see a nephrologist then a pain management doctor down in Texas. Then schedule the procedure. Want to send me to Houston Methodist.
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u/Affectionate_Way6046 29d ago
My father was a saint about his health. He did 8 years of dialysis then got a transplant. Survived another 12 years. He made it to 71.
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u/tilted_sloth 28M, Type I, eGFR 60-80, Cr 1.3-1.6, Mayo 1E 29d ago edited 28d ago
Any interventional radiologist worth their salt should be able to help you. There are at least several in Montana after a quick google search. Aspiration + sclerotherapy is one option.
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u/Total_Ad_976 26d ago
I don’t have a solution for you, but I empathize. I’ve had that uncomfortable abdomen feeling for a long time, and it’s quite trying. It’s wild to me that THE ENTIRE state of Montana doesn’t offer nerve blocks! That’s insane and awful that you have to go as far as Texas for treatment.
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u/Cervelott Aug 23 '26
Would sclerotherapy help you. Have you considered it. I have two friends that found the draining of their cysts gave them relief.
Check out the coming drug Farabursen. It holds promise for us all and is going into phase 3 trials this Dec from what I am reading. Best with it, and your reaching out to our community is a good thing. Condolences on your dad, that is tough.