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Old Fri Nov 10, 2017, 03:30 PM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
WW,

I can imagine how isolated you feel. When my wife was treated for AA at a major hospital here in California, she was the only AA patient in the entire hospital.

I'm glad your husband is an optimist. (My wife and I are too, and we think it helps a lot.) But if he purposely avoids bad news, that may leave you in charge of gathering the facts.

Here are a few ways you might be able to get more information or feel less isolated:
Go to each meeting your husband has with the doctors, and bring a written list of questions, perhaps a few for each appointment. Only your husband can tell you how he's feeling, but you can gather everything else yourself: what the doctors say, what the test results are, and the answers to the questions you pose. When doctors see that you are organized, they may treat you more like a team member.

Check with the Health Service Executive (if that's the right agency) to find out what chelation drugs other than Exjade are approved. Then you can ask the doctors whether they are worth considering.

If your husband's doctors haven't had much experience with AA, or AA in combination with haemochromatosis, maybe they'd be willing to talk to their peers at larger medical institutions (in Ireland or even in other countries, e.g., King's College Hospital in London) for advice that could help them with your husband's care. It wouldn't hurt to ask if they know AA specialists who they could consult with.

Ask the hospital if they sponsor any support groups where patients or caregivers can talk to each other.

And, of course, take advantage of websites like this one, Facebook, on anywhere else you can make connections and gather information.
Good luck!
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