Wednesday, January 14, 2009

Clinic Appointment

Well today was clinic.  And I am NOT getting locked up!  I was actually a little surprised, though I woke up this morning and felt better than I had in a few days.  I am stable right now.  First numbers are today the ones after are last appointment on November 24th.  

FEV1 - 1.24L (40%)  1.26L (40%)

FVC - 2.11L (57%)  2.40L (58%)

FEF 25-75% - .55L (15%)  .49L (14%) 

My numbers are down very slightly.  But nothing that is worrisome.  

And holy shit I gained 3 pounds!!!  I now weigh 121!!!!!!!!  I  have never been so heavy in my entire life!  The dietician said my ideal weight is 125-126.  I said phooey I am staying here!  

I talked to him about the TOBI and my tightness and he put me on Singulair and Symbicort.  He said to stop the Serevent and just do Symbicort.  My airways are inflames and reactive so hopefully this will help it so I can tolerate TOBI and keep kicking the PA’s ass.  I am also to do Albuterol before I do TOBI (as normal) then do the Symbicort then put Albuterol in my TOBI and see if that helps also.  If it doesn’t help I am to call him and he said we will figure something else out to combat it.  Fingers crossed it does though!!! 

Let’s see what else?  Hmm.  Oh I asked about the blood in my stools and he said it sounds like hemorrhoids (ahhhhh!!!!!!).  But that is normal given all the coughing that we do.  So that is nothing to worry about.  He said or it could be something like the enzymes not dissolving completely where they should and when they get to my colon/intestines they are breaking down the tissue there.  They don’t have any clue it is body tissue and not food so it just does its job.  So that is a possibility too.  

BUT the fun part of the appointment was…he is trying to get in contact with the colon guy at HUP.  Apparently they are doing some sort of research on families with genetic colon cancer.  When I told him about my family’s history all he could say was “wow”.  I guess we had never told him the extent of the genetic link.  He was floored that it is basically in my genes to get it.  He could not get a hold of the DR while I was there so he is going to call me back at some point and let me know what the DR says.  So now I am going to call my Grandmom and see who had it and all the fun lineage stuff. 

That was it.  OH yeah I had my dermatology appointment this morning too.  She prescribed me a medicated face wash and cream to use.  So I have to go back in 8 weeks to see if it helped at all.  I am hoping it does.  Not that my acne is all that bad but it is leaving purples spots all over my face and I look polka-dotted!!!!  

Below is a picture of Philly from my view stuck in traffic at 30th and Market street.  Fun times!!!  And also a couple from Sunday when Rocky, Maggie and I were all cuddling in my bed reading.  So cute!!!!  And little Owen from Sunday too.  He is adorable!!!!!!  I have a video of him crawling and if I can figure out how to upload it I will!


  1. yay! now here's hoping the albuterol/symbicort combo works to solve your TOBI issues.

    CUTE puppies btw! sammy is jealous...

  2. Yay, Amy! I'm so glad you don't have to go in. I hope the med switch works wonders.

    The pictures are sooo cute. Is that your roommate's dog?

  3. Sammy needs to come play with us!!!!!! Though Rocky gets a little excited with other puppies and tends to knock them over haha!!!!

    Yes Cindy that is my roommate's dog :)

  4. Hoping the med switch works. Love the doggie pics. I'm so glad you are home now instead of in club med.

  5. Yay Amy, I am so glad you had a good appointment. Love the pups, so cute!

  6. Glad you didn't have to get hospitalized.

  7. awesome to know you didnt have to go in! tobi used to make me wheez for some reason so i do colistin instead. i'm happy you did great at your appt.

  8. Tag you're it! Check out my latest post!! :)

  9. Thief! You totally stole my 3 pounds! I went on a freaking all you can eat vacation and lost three pounds. I WAS 121 for like the last 5 months! I think I lost muscle mass though, as I'd been working out for 2 months and I took the week off. Phooey!

    Glad things are pretty stable for ya.

  10. Oh I'm so glad you don't have to go in. I hope the new med combo will be just what you need.

    Love the doggies! Cute baby too.


  11. TOBI makes me Very Tight too! I started only doing it 2 weeks at a time rather than the 28 days on. I am on the early access study for Aztreonam you should see if you could get on that... But it doesnt make me tight at all and it takes 3 min 3 times a day. and its 28 days on 28 days off so I do the TOBI for 2 weeks in between the Aztreonam. I was going in the joint(hospital) every 2 to 3 months for 2 weeks the last time I was in was March. I started Aztreonam in April so its worth seeing if you can get on it!