Wednesday, March 11, 2009


I had a great appointment at my transplant clinic. First, I stepped on the scale this morning and I weighed 116! When I stepped on the scale at the clinic same result. My oxygen was 93 at fist and then quickly went to 98 at room air. Of course my heart rate was so high it would scare most people but not me 135...that's what I get walking 50 feet without oxygen on. Off to do lung my lung function test. My FEV1s was 1.24...41% of my predicted. Yeah!!!

Okay now for the bad news. I found out the never listed me....what??? I guess they didn't think I wanted to be listed. Once I got everything straightened out they decided they are going to list me but not make me active...hello that is what I though we did in November. Good thing my health improved instead of worsened. I would have been really pissed!

After my clinic appointment, I needed to go to see the infectious disease folks. They told me I was the healthiest looking CF person they had ever seen. I was very happy about that. After we talked about all the funky stuff that my cultures have grown in the past they decided I can be treated with just the standard antibiotic treatment at the time of my transplant unless something changes between now and then. The day ended with a shot. Hepatitis A vaccine just in case I may want to visit any third world countries after my transplant. For some reason, i just found that funny.

Why this improvement all of sudden? I think it is the change of attitude I have had since my last CF appointment. I love my CF doctor but he said something that really puzzled me. He said "Steph, it is great that you have stabilized but look at all the work you are doing to stay where you are at." I took a long look at the changes I had made in the past few years and they are really nothing that I think has changed my quality of life. The biggest change was working from home. I actually love working from home. The only thing I miss is the social part of going to work. I miss all the people I work with. There was one thing that I wasn't happy with. I was not having any social life because I was afraid to catch something. So I decided I can't stop living just because my lung might crap out on me. I have been so much happier since I try to socialize a little more. I realized I could be afraid to live! I had never been that way before. I don't want to have any regrets. So I am going to live my life that way...I will just have an oxygen tank, a bottle of purell and a mask tagging along!


Anonymous said...

Wow, 98 and 1.24. Looks like you bought yourself some important time. Good report.

Amy said...

I'm so happy to hear the appointment went well!!!!!!!!!!

You and I have the same FEV1 liters ;) 1.24...

Having a social life and being happy is such a key with us I think. Otherwise all we feel like is that we are surviving and not living. So kudos for you for making the change for the better!!!! :)


Tina said...

Yay Steph I'm so glad things are going well and you sound so positive, Live it up girlie!

Oh and make sure you and the team are always on the same page regarding the "plan" I'm kind of pissed there was a lack of communication on their part. I'll kick some ass the next time we go in!