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Offline davis609

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  • Name: Robin
  • Age: 43
  • Gender: Female
  • Location: PA US
Total Posts Last Post Last Seen Joined
0 02/05/08 16:42:16 06/18/08 14:52:36 02/05/08
Visitors Now Visitors Today Most Visits Total Visits
0 0 20
02/11/08		 86

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My favorite sites

  1. Spiderspun

Music I listen to

I like all kinds of music. Depends on my moodimage


TV shows I watch

Prison Break, Guiding light, House, American Idol, Survivor

About Spiderspun

Spiderspun is a web site created in 2000 by an Alpha-1 patient (Noreen) who links the blogs from other Alphas (via their permission or request) for the purpose of raising awareness and support about their genetic condition, Alpha-1 Antitrypsin Deficiency.

My Bio

Now retired, I am a wife, sister of 2, mother of 3, and grandmother of 1. I was diagnosed with Alpha-1 in March 2005. I am lung-affected with the PZ phenotype. My favorite movies are Ghost and Grease. I like all kinds of music. I enjoy knitting and crocheting. I have 1 dog. My heritage is Heinz 57! image


My blog

  1. Catch my breath

    02/05/08 17:51:26 | 0 Comments

    I first started to notice something was wrong in my early 20's I started to wake up in the middle of the night unable to catch my breath. Went to the Doctor and was wrongly diagnosed with asthma. Took about 15 years and a new Doctor to finally diagnose me with Alpha 1. I have a wonderful Husband,two beautiful daughters and a step son. I had 31% lung function at my last PFT and am currently taking spiriva, advair 50/250, albuterol as needed and weekly Zemaira infusions.
    Read More

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My Friends on Yuku

davis609 has 6 friend(s)

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Comments about me

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  1. avatar

    mcrews

    User Infostatus offline106 Kudos

    02/11/08

    Hi Robin, thanks for visiting. What is PZ phenotype? I'm going to guess Null/Null since you started having trouble in your early 20's. I notice one med difference of note between us. I use Ipratropium bromide/albuterol by nebulizer 3 to 4 times a day. This is my most notable med for breathing easy. Everyone is different, but it helps me. Before I had Staph, I was jogging a bit. Hope to return to that eventually. Good to meet you. Michael

    02/12/08

    Reply from davis609:

    Hey Michael,
    It was nice to hear back from you. PZ is basically Null/Z. From what my Dr. tells me, there are 2 types of the P gene one is a good one and one is a bad one (bad because it gives false serum numbers) and I inherited the bad one. My serum levels when checked are usually in the 60's but are most likely in the 20's or lower. I hope I didn't confuse you. I have a very rare pheno type. Talk to you soon. Robin

  2. avatar

    spiderqueen noreen

    User Infostatus offline27 Kudos

    02/06/08

    kudos on adding your image!

  3. avatar

    spiderqueen noreen

    User Infostatus offline27 Kudos

    02/05/08

    I love the dancing banana!

    02/06/08

    Reply from davis609:

    Thanks!! I figured it went well with heinz 57.

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