Gingerloveslife
New member
I am going tomorrow for my yearly check-up. I will be having a CT scan, stomach ultrasound, dexa bone scan, pre/post Pfts, lung volume box, and blood work. I already have butterflies in my belly and am praying so hard for good results since I am still way below my baseline.
Please keep me in your prayers for tomorrow. Thanks so much! <img src="i/expressions/face-icon-small-smile.gif" border="0">Ginger
UPDATE:
First of all, let me thank all of yall for your prayers. I could feel the love surrounding me and keeping my nerves down throughout the day.
On the other hand, not to be a downer, but today sucked. First of all, I awoke to the news of Justin's death. My heart is just broken. I cannot even imagine what Emilee is going through right now and all I can think is how bad I really really hate CF.
Then I got to clinic at 9am and did not leave until 4:30pm. My pfts were crap. My FEV1 was 45%--after spending years resting in the high 50s I think this may be my new baseline. My lower airways was 15% which is terrible in my eyes. I finally mentioned the big "T" word and my doctor said when I reach 40% or below he will call for the consult. What is so bad about this disease is that you can spend so many years at one baseline and then one little bump in the road can push you so far down you cannot recover. How do you know when transplant might be just around the corner with dips like these?
The doctor did not get my ultrasound back, but the sinus CT scan is sending me straight to an ENT consult. I have had many, many sinus surgeries but never with crappy lungs like these. The plans are also to send me to an allergist and to a vascular surgeon to start discussing me getting a port--yah!(sarcastic of course). My weight was also down to 106.9 from a normal of 112 which made them act like I am anorexic or something. There are talks of an appetite stimulant in my near future.
I am sorry I am being such a baby about today when I know so many people out there have it so much worse. I just went into this appointment with so much hope and faith and I feel like I was let down. My spirit was already broken though after hearing about the death of Justin. Please pray that my faith will be strengthened and I wake up tomorrow not quite so bitter towards CF. More importantly though, please lift Emilee and her family up in your prayers. Breathe Easy Justin!
Please keep me in your prayers for tomorrow. Thanks so much! <img src="i/expressions/face-icon-small-smile.gif" border="0">Ginger
UPDATE:
First of all, let me thank all of yall for your prayers. I could feel the love surrounding me and keeping my nerves down throughout the day.
On the other hand, not to be a downer, but today sucked. First of all, I awoke to the news of Justin's death. My heart is just broken. I cannot even imagine what Emilee is going through right now and all I can think is how bad I really really hate CF.
Then I got to clinic at 9am and did not leave until 4:30pm. My pfts were crap. My FEV1 was 45%--after spending years resting in the high 50s I think this may be my new baseline. My lower airways was 15% which is terrible in my eyes. I finally mentioned the big "T" word and my doctor said when I reach 40% or below he will call for the consult. What is so bad about this disease is that you can spend so many years at one baseline and then one little bump in the road can push you so far down you cannot recover. How do you know when transplant might be just around the corner with dips like these?
The doctor did not get my ultrasound back, but the sinus CT scan is sending me straight to an ENT consult. I have had many, many sinus surgeries but never with crappy lungs like these. The plans are also to send me to an allergist and to a vascular surgeon to start discussing me getting a port--yah!(sarcastic of course). My weight was also down to 106.9 from a normal of 112 which made them act like I am anorexic or something. There are talks of an appetite stimulant in my near future.
I am sorry I am being such a baby about today when I know so many people out there have it so much worse. I just went into this appointment with so much hope and faith and I feel like I was let down. My spirit was already broken though after hearing about the death of Justin. Please pray that my faith will be strengthened and I wake up tomorrow not quite so bitter towards CF. More importantly though, please lift Emilee and her family up in your prayers. Breathe Easy Justin!