Friday, July 13, 2007

The first person that is vital when a person has a chronic illness is a good primary care physician. My dh's is a PA and she is AWESOME!! She is concerned, curious, helpful, kind, and so knowledgeable about the lungs. She understands that A1AD is about more than just the lungs however. She is helping us find a new lung doctor too. The last one was a jerk. The PA was the first medical professional that we dealt with who was genuinely interested in learning about A1AD. She made us feel like someone actually cared.

The next group of individuals are the AlphaNet coordinators. They are helpful and knowledgeable about A1AD and all the paperwork, etc. that goes with it. All have A1AD as well so they are in the same boat as my dh.

Other people who have A1AD are a great resource as well. You can meet them through the state support group or at regional/national meetings & conferences. We also belong to a listserv so we have a great resource there. These people have experience in a ton of areas - insurance, disability, transplants, medications, questions to ask new doctors, and a million more - and are not afraid to share their knowledge & information.

The pharmaceutical reps that we deal with (dh takes Zemaira weekly) & the company that administers it for them (Accredo Therapeutics) are wonderful to deal with. Yes, our insurance pays them thousands of dollars every month; however, they are proactive and know their stuff. They are helpful and kind and all go the extra mile.

I can not possibly add in all the individuals that we have met in the past year who have influenced our lives for the better. But here are a few - Judith (PA); Karen (A1AD); Diane (state chapter/pharmaceutical rep); Gladys (state chapter); Melissa (her daughter); Elizabeth (pharmaceutical rep); Pine City Jim & Carol; Connie; Reid (pharmaceutical rep); Dr. Brantley; Karis (pharmaceutical rep); and Jen. Like I said, there are many more that have had an impact on us but these are just the first that come to mind.

Next post will be a summary of the conference we went to recently in Alexandria, VA. It will hopefully have a ton of links to various areas as well. Not sure of the timeline but I hope to have written in the next week or so. God Bless!

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