I am looking for support for myself and hopefully I can provide support for someone else through an experience or knowledge. I am feeling a little helpless lately. I want to be healthy but my body is changing and it is taking a toll on me not just physically but mentally as well. I feel like I am losing control! I feel like the doctors don't have any answers to what I want. I am so tired of hearing "It's just the progression of your disease" Like thats all there is and like thats ok. What ever happened to preventive care. Like how about trying to prevent further progression. I want to know what I can do differently to slow down the progression of my disease. I feel the doctors want to wait until I need dialysis before they care. Ok now I sound like I'm venting. I can go on and on but I guess I will save it for another entry but I do want to ask if anyone knows about Tolvaptan and the criteria for being a candidate for this medication. It will hopefully be FDA approved in September. Thanks for listening!!
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I am looking for some input from all of you and I appreciate any comments. Myself and my brother have ADPKD and we have multiple issues but one of my sons has ARPKD and he is my main concern right now. He has had many issues recently including a brain aneurysm to get an idea of the stress but what I want to help him with right now is the severe acid reflux he has. It may not sound like a priority but it is for him so it is definitely for me. Not only do I think omeprazole is not the best choice for him but it does not help him at all. Any one taking something for this that has helped and not contraindicated with their PKD. I realize people react different with medications but just trying to narrow it down. Thank you so much for any input!!!!