Tuesday, March 26, 2013

Study Disqualification and More

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.


  1. I'm so proud of you! It's crazy. Keep being busy. Keep living and being happy. I'm so, so happy that you CAN do all those things. You're awesome.

    1. Thanks Jess!
      Whether I can do this summer session and get out on the other side not half dead is another story HAHA! But I will attempt it ;)