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Posts (20)

Fri, Sep 28 10:05am · A Breath of Fresh Air: Meet @windwalker in About Connect: Who, What & Why

I loved learning more about you. I share your love of wildlife and palm trees. I feel like I know you better. Thanks for sharing.

Tue, Sep 25 6:54am · Alpha-1 Antitrypsin Deficiency - just been diagnosed in Lung Health

@windwalker I met some really nice folks at the Gainesville support group. I learned some new information and the man sitting next to me ended up being my nurse for my infusions that I started last week. I’m looking forward to seeing Dr Brantly tomorrow for the first time.

Sun, Sep 23 6:58pm · Alpha-1 Antitrypsin Deficiency - just been diagnosed in Lung Health

I went to the Gainesville support group, I see Dr Brantly this Wednesday. He will not be the speaker after all at the Orlando group.

I had not seen the response. Thank you for drawing it to my attention!

Thu, Aug 23 8:53pm · Alpha-1 Antitrypsin Deficiency - just been diagnosed in Lung Health

I think my husband and I are both going to go. @windwalker Terri said she was going to ask you about starting a discussion group for Alpha -1. Would that be possible to do? I'd be more than happy to report back on Dr. Brantly's talk. Thank you.

Thu, Aug 23 8:20pm · Alpha-1 Antitrypsin Deficiency - just been diagnosed in Lung Health

You are right – I should go to a meeting. I was just looking at one support group in Orlando and see that the speaker at their next meeting is Dr.Mark Brantly. I will definitely go. Thank you.

Thu, Aug 23 8:05pm · Alpha-1 Antitrypsin Deficiency - just been diagnosed in Lung Health

Our three children are in their late 30's and early 40's. Thankfully, none of them have ever smoked. I already know that we are going to have a hard time convincing them that they should be tested. I broached the subject with them before I knew what my levels were and they think I am being an alarmist. They've never heard of Alpha -1 and like many "children" they think they know better than their mother and father. The fact that I have a terrible time walking up stairs or walking any distance doesn't seem to phase them. At this point I'm more worried about our grandchildren who range in age from six to nineteen.

Has anyone seen any information on how to convince reluctant adult"children" to get tested?

Thu, Aug 23 5:20pm · Alpha-1 Antitrypsin Deficiency - just been diagnosed in Lung Health

I just returned from the doctor and received the rest of my results. I am SZ and my level is 62.8. My doctor seems to be extremely knowledgeable on the subject, but he thinks I could benefit even further by seeing Dr. Mark Brantley in Gainesville.

He is also arranging for me to receive monthly infusions. I'm not sure what I think about that. Do any of you receive infusions? Do they help? He sent me home with an overnight pulse oximetry device to measure my oxygen levels when I sleep.

While I like the fact that he is being so proactive – I hate receiving these results.

Do you think I could benefit by coming to a support group meeting or at this point to do you recommend I just keep reading up on everything? It looks like the closest one is over 1.5 hours away.

@windwalker @waterboy @colleenyoung