Tuesday, June 1, 2010

Clinic appointment

Well today was the day.  All went fairly well, about what I had expected.  I am free from lock up for 4 weeks, but will most likely get thrown in beginning of July.  Dr D agreed to a 2 week course of oral Cipro to see if that brings me back to base.  I was 36% FEV1 when I went in which was down from 42% three months ago.  They had me do an albuterol treatment and I was back up to 43%.  That's a 19% increase in capacity after 2 minutes of albuterol and 15 minutes waiting for it to spread.  Which means after 3 hours with no treatment I dropped that much.  It's craziness!!!  With all of my other symptoms being stagnate where there are, Cipro is a decent option. I usually respond fairly well to it, so **fingers crossed**.

She said if I am not feeling totally fabulous when I come back then she wants to do a clean out.  Especially since it has been almost a year since I had my last round - October.  The shortness of breath and increased cough/sputum production warrants a clean out, and a strong one if Cipro fails me.  If I do have to go in that is fine, as long as I am out by July 17th for a friend's wedding in PA.  I will not miss it!  I don't care if I am on IVs still but I will be there!!!

For the rest of the visit: my blood pressure was a little off.  I was 133/73 which is different for me.  I am usually 110/90 ish.  My O2 was 92-93% which is fairly normal.  She told me to make sure I check my O2 throughout the day and if I see it below 90% at any time I need to put the O2 on.  She doesn't want me to mess up my heart.  Understandable for sure!  I also had a chest xray done.  That was an experience!  I am used to waiting in the waiting area to be called but at Brigham's they take the CFers right into a changing room and then into the xrays.  It was awesome I didn't have to wait more than 10 minutes!!  And that waiting room was PACKED.  I told her about the lactose intolerance and she said I can have a test done to prove I am but considering I feel much better since I have cut out lactose there is a good chance I really am and no need to have it done unless I want it.  Works for me!!!!

I am still getting used to my new clinic.  It is a total 180 degree change from Presby.  Children's hospital versus adult.  Female doctor versus male doctor.  Everything is brought into your room versus having pfts and vitals done in different rooms.  Taken right to a room versus waiting in a waiting room.  It is all so strange and new to me.  Luckily I felt much more comfortable with Dr D this time.  I think we bth were feeding off each other in March...me being nervous seeing a new doctor and she feeding from my hesitations etc.  I really liked her this time and am glad I chose to come to Children's.  Once I have been there for a while I am sure my hesitations and awkwardness will fall away.  Its very strange switching doctors after 25 years.

So all in all not a bad day.  I avoided being thrown in for now and although I have to avoid the sun for 2 weeks, at least I can still enjoy the sun from under my big floppy hat and lightweight clothing!


  1. Hopefully the cipro does the trick. Being at a new clinic is weird- I did that about a year ago.

    Hugs to you.

  2. Amy,hope the cipro does the trick. I love that Children's treats us as high risk and we bypass all waiting rooms and go straight to testing for whatever is needed. It makes things go so much quicker. I'm glad you feel more comfortable with Dr. D as well. Take Care.


  3. That is so funny how you referred to hospital stays as "lock-ups"! My name is Susan Hastie, aka "Miss Gunky," and I've recently started my own blog called "Miss Gunky's CF Blog" on blogspot.com if you'd ever like to visit it. Other stats....I'm also 29, and I live in the Philly area where the CF center's moving to HUP, across from CHOP. Love your book choices, by the way. I've got to look into those Darcy books! I love Jane Austen!