Tuesday, June 2, 2015

First Appointment at MGH

Today was a very long day.  But it was worth it.  I really like the clinic at MGH and I am going to stay there.

I had a full PFT appointment at 8:30 am so I had to be up and out the door by 6:30.  It has been raining for 3 days and I knew traffic would be a mess.  It was.  PFTs went well, I have not changed since April which is good.  They did a post as well and I shot up 3% from 37% to 40%.  It doesn't seem like much but it is a 9% increase which is huge!  I got a little panicky in the booth when they blocked the air for the test.  But I only had to stop once.  The woman was very nice and didn't get annoyed thankfully!!!  I never had that happen before.  Good old anxiety haha!!!

At 10:30 I had my clinic visit.  I saw the nurse and we went over everything.  It was probably close to an hour we chatted.  I had to give a history and medications etc since I am new.  I talked about some of the issues I have and things I would like to focus on.  We are going to do another OGTT to see how my sugars are.  I am going to monitor and log my sugars so when I see the Endo I have a good idea where I am at.  I scheduled an appointment with her for September.  I am making an appointment with the PT to do an exercise tolerance test and to set up an exercise plan.  I am going to see a gynoendocrinologist who focuses on hormones etc after menopause.  I never knew someone like that existed and I think it will be great to meet with them.  We are going to do an overnight O2 study to see how my numbers are when I sleep.  I haven't been using O2 when I sleep the past month or so and I have been feeling OK.  But I want to be sure I am not hurting myself by doing this.  I got a prescription for Ativan which I loooooove.  So thankful they gave me one for my anxiety.

After the nurse, I met with my new CF doctor.  He was great.  Very personable and open and I felt very comfortable with him.  We talked about everything, my history, action plan etc.  One thing he wants to do is have a 24 hour urine collection done on me to see how my kidneys are actually functioning.  Since IV Tobra has been off the table for a while but my kidney functions have always looked OK, he wants to see if there is a reason why they stopped the Tobra.  I was never really given a reason just that my numbers were off and we tried different doses and times to fix it but it didn't work.  So he wants to see if maybe there is some kidney damage that isn't showing up on my blood tests.  His main concern is that I am treated by the same family of antibiotics instead of getting two families in there.  So if we can add Tobra back in that would be good.

Overall I was there for 3.5 hours and I feel like I got so much accomplished.  I felt very comfortable there, not like I was out of place at all.  At BCH you get shoved in a room and I always feel like I am a caged animal.  AT MGH clinic I was put in a room but I was able to leave to use the restroom and when I left I didn't feel like I was just another person waiting to check out.  I chatted with the woman at the desk and it was nice.  I felt like they cared and like I wasn't just another patient on the list.  I missed that from my old clinic in PA.  I am so glad to have it back.

So a shout out to my 3 great Cysters to answered my numerous questions over the last few months and helped me get set up to move!!!  You ladies rock!!!

Now to send a good bye letter to BCH...

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