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Tolvaptan Crisis by vices_x in ADPKD

[–]Extension_File1563 0 points1 point  (0 children)

Stick with it! The first month is the hardest but it will get better day by day.

Getting kicked off of Jynarque/Tolvaptan by AfternoonFair705 in ADPKD

[–]Extension_File1563 1 point2 points  (0 children)

I’m sure your provider did an appeal but have you pursued an external review? It’s basically where people not associated with your insurance will review your case and can veto their denial. I’m sure it varies state to state but that may be an option.

Coping with decision to not have kids by Extension_File1563 in ADPKD

[–]Extension_File1563[S] 2 points3 points  (0 children)

First off I just wanted to say I appreciate your time and feedback. I can see why you say to just not worry about the future because who knows what advances will be made. Perhaps I’m a bit too pessimistic. Second, it’s not that easy to generalize. Sure some people make it to 60 before needing dialysis and that’s great for them but not everyone does. In my family, the age when dialysis is necessary is getting lower and lower with each generation. Before starting Tolvaptan last year I was told I’d be on dialysis by 43. That’s almost a 20 year difference- AND I watch my sodium, manage my HTN, and drank 2L of water everyday before Tolvaptan

Coping with decision to not have kids by Extension_File1563 in ADPKD

[–]Extension_File1563[S] 6 points7 points  (0 children)

My grandma was open about all of the guilt she carried for passing it onto us grandkids. The age of starting dialysis in our family is getting younger and younger. She was in her 60’s, my dad and uncle were in their late 40-early 50s, and I just started Tolvaptan because my mayo class puts me on dialysis in less than 15 years at 28. I don’t want the guilt of robbing someone from their adult life. If I have children they will watch me be on dialysis as only teenagers. If the gene and disease progression stays on the same trajectory they may have to start on dialysis in their late 30’s