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Friday - first day of screening.

20/8/2011

2 Comments

 
Today I had a full day of screening.  Tests included; lung function, 6 minute walk, EKG, muscle strength, bloods, physical and medical history.  I'm sure i've forgotten something...

I was a little worried that my lung function might not have been good enough to get into this trial.  But I am pleased to say that it was JUST good enough!  WOOHOO!

The people at UF are so lovely, you just could not wish for a better group of people to be looking after you. 

The weather is warm and rainy here today.  It's very very tropical.  Yesterday Brad the OZ took me for a drive around the town to show me the sites.  The University campus is enormous - 2000 acres!  Spanish Moss hangs from everywhere around the town and surrounds.  I saw a squirrel yesterday, they're so darned cute.  Wonder if MAF would notice if I imported a couple...

Last night we went to "Cracker Barrel" for dinner with Monique Griffen.  Had a great time.  The shop in the front of the restaurant is totally awesome with all sorts of quirky cool stuff.  We tried "grits" to eat.  Always wondered what those were when you hear the word on the telly.  Well it's kind of like porridge but made with corn instead of oats.  On it's own it's kinda foul.  But we mixed a little butter, salt and apple butter in it and it wasn't too bad.  I don't think I will order any more though...
2 Comments
Robyn Farmer
21/8/2011 01:22:21 am

Fantastic that you passed the tests Allyson!!!! Infusions, here you come!

Reply
Kerri Bowling
24/8/2011 02:59:17 am

Hi Ally, saw yoou depparture on the tv last night....hope it is all going well, any chance you could send email me that pic which appeared of you having your first transfusion? I would like to run it with a wee story about a fundraising dinner fo you! moocho aroha, Kerri @ midweek ;-)

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  • Home
  • Our People
    • Our Patients >
      • Freda
      • Allyson
      • Christine
      • Dean
      • Samantha
      • Yakuta
      • Laurie
  • About Pompe
    • What is Pompe Disease?
    • Symptoms
    • Diagnosis
    • Treatments
    • Recommended Links
  • News and views
    • NZPN Conference 2018 Summary
    • Press Releases
    • Personal Media Stories
    • Blog
    • Allyson's Florida Blog
    • Success Stories >
      • Maryze
      • Brad
      • Monique
      • Ben
      • Brian
  • Clinical Trials
  • Air Travel
  • Donations & Fund Raising
  • Glossary
  • Accessible NZ
  • NZPN Membership
  • PHARMAC & Govt
    • Party stances on funding Rare Diseases
  • Contact us
  • Diagnosing Kiwis