After much discussion and research and advice - my dh should have a new lung specialist (actually a real Alpha doctor!!) this week as well as an initial appointment with him. He is on the Washington coast (about a 6 hour drive one-way) but we believe it will be well worth the effort. He is willing to work with our primary care physician, discuss options (including, when the time is right, transplantation), and be a willing part of our Alpha-1 medical team! We are encouraged and excited to have a new member to our team.
One word of advice for anyone - if your doctor (specialist or not) doesn't meet your criteria for a good doctor - fire them and find a new one. There are far too many doctors out there to stay with one that makes you uncomfortable or doesn't seem to care. Your insurance company or support network (our's was the Alpha-1 network) to find ones in your area and then research them before even calling to set up an appointment. This is important! Don't just leave it to chance!
Have a great week.
2 comments:
Hi,
I found your blog. It is so good to see you on the Internet spreading the word. I hope all is well for you, and keep in touch.
Jen, mom of Grace & Meghan, ZZ Alphas
http://alphagirls.blogspot.com
Wisconsin
Thanks Jen. I really feel that education is the key and if we can even get one person tested that wouldn't have gotten tested otherwise, we're doing well. Testing is the key - at least right now - so people can get on augmentation treatment or into a research project or simply change their lifestyle to keep clear of cigarettes, cigarette smoke, alcohol, etc. I know I'm preaching to the choir but I hope others read these blogs as well.
BTW, I think we met in VA in June. Are you on the Alpha-1 board (is it the Foundation board??). If so, then my dh (Ken) came up to speak to you after one of the sessions. Anyway, glad to know that my blog is being found!!
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