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Study Disqualification and More

Posted Mar 26 2013 8:10pm
Clinic went well today.  For the first time in a few years I am not trying an oral antibiotic on the first appointment after a round of IVs.  I feel OK, not fabulous, but not bad, and since my numbers are roughly where they were last time (post bronchodilator) I can wait and see her again in 2 months.  If I make it that long I will be ecstatic.

Since I had to meet with my professor this morning at 10 am and clinic was at 12:30, I knew I would be in need of a treatment.  My numbers reflected this.  I blew at my highest at 1.01L, 35%.  Last clinic I was 1.16L, 40%.  But I was trying to get into a Pulmozyme study so I asked if I could have an albuterol neb and try again.  We did!  I hit 1.15L, 40%....but it was not good enough.  The calculations they use for the study had me at 37.5%.  Sad :(  This is the first time I have ever been disqualified from a study based on FEV1 being too low. I am not happy about that.  What can you do though right?

Holding steady I am.  I registered for classes yesterday and my summer will be BUSY.  3 classes, one is a 12 week class, one is a six week class, overlapping the last six weeks of the first and the third class is a full week institute that will take place simultaneously with the other two classes.  So the third week of July I will have 3 classes!  My week is going to be hectic!  Monday I will be at school from 8:30-4:30, then Tuesday, Wednesday and Thursday I will be there from 8:30am-9:30pm and Friday again from 8:30-4:30.  Can we say fevers and sleep that weekend?  I don't care though.  I need to finish by December and to do so I need to take three classes this summer and two this fall.  Plus this will test me out on something I am thinking about...

Going back to work.

I have been working out at the gym five days a week doing cardio, but will be adding strength training in shortly.  Sunday's I take a Yoga class too.  My goal is to work my butt off (literally as well as figuratively), and see if I can get my heath more stable and get it up.  If I can get to 45% and stay off of IVs for 6 months, then I will seriously consider working again.  P is not excited about it, but he said he will support me....but only if it won't make me sicker faster.  I agree with him.  I don't want to go back to work and in three months have to stop again and be listed for transplant.  But I have nine months to think about it, weigh my options and decide if it could work.
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