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Apol1 Kidney Disease (AMKD)
Hello all I am new to the group and was recently diagnosed with Alpol 1 kidney disease. From what I know so far after doing genetic testing the type of CKD I was diagnosed with came from genetics. I am so scared and my anxiety has been extreme. I am 42 yr old with a 6 year old daughter and I worry that this new diagnosis is going to end my life. My apologies if I sound dramatic but yet I am scared. I have an appointment at the Mayo Clinic this coming week and pray that I get better news than I been told. If anyone has any insight please respond to this thread. Thanks and God bless us all!
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@lovely83 Welcome to Mayo Clinic Connect. I have CKD due to diabetes. I know what Apol1 (AMKD) is but I’m not very familiar with it. I understand that any kind of kidney disease diagnosis is scary especially if it is genetic and you have children. Please know that you are in the right place getting care from Mayo. I don’t think it gets any better than that IMHO. Hopefully you will soon hear from others here that have some experience with this condition and can provide more encouragement.
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3 Reactions@cehunt57 thanks for your encouraging words it means a lot to a person with low hopes being recently diagnosed. Your in my prayers and I hope you are doing well with you CKD.
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2 ReactionsMy CKD is stable at present. If all this is new to you I recommend finding a nephrologist you trust. Ask for kidney function labs to be explained to you so you know details about your specific situation. Get a referral to a dietician who understands renal nutrition because what you eat and drink matters. These are things that have helped me and could help you too. Thank you for the prayers. It sounds like you are a believer too. That is the most important thing of all. You and your daughter will be in my prayers too.
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