Wednesday, November 2, 2011


Every year I am to check in with my pulmonologist who LOVES to torture me and run pulmonary function tests and any other array of torture he can think of. Nah, it isn't that bad. It usually makes for a long day and I really hate the doom and gloom speeches and looks I get when everyone sees how bad my lungs really are. Other than that, I'm grateful that I can schedule everything in one day and get it over with.

I have a new pulmonologist...YAY!! The last one had a personality like Eeyore. So...we have an appointment before we schedule all the tests. He notices how much phlem I am coughing up and asks if this is normal. I tell him I'm coughing phlem (sorry this is kinda gross) about every 10 minutes. He is a little concerned, says that my pulmonary fibrosis is a dry lung disease and this shouldn't be happening and schedules a CT scan of my lungs to see what is happening.

The day of the tests arrive. I'm so grateful that Jeff works for a company that is willing to let him work from home so that he can keep an eye on Sullivan while I am away. My Mom had a bad reaction to the Iodine that is injected before a CT scan a few years ago and has had some problems since then. I'm kind of nervous about the CT scan, never had one before.

The nurse instructs me that she needs me to take a pregnancy test before the CT scan...weird, but okay. It never fails either...as she takes those little droplets of my urine and slowly drops them on the test and sets the timer for 3 of the longest minutes ever, I'm secretly hoping that she says "You're Pregnant." I know, of course, that I am not, but I still secretly hope and then I start day dreaming of the phone call I'd get to make to Jeff. And yes, my heart was a little sad when she said I wasn't pregnant.

She inserts the IV into the crook of my arm with the longest needle ever. I was afraid that if I bent my arm that it'd poke right through my skin. Stiff arm...I look like a complete robot idiot. CT scan only takes 10 minutes and the iodine made me feel so warm and tingly that I liked it. No side effects, yay!

Onto the pulmonary functions tests which is hard work for a person who has yuck lungs.

Then I get to see the Dr. and discuss all these results. From my CT scan he immediately notices that I've developed what is called Acquired Bronchiectasis which are these little pockets in my lungs that fill with phlem...a lot of cystic fibrosis patients have this. Since I don't have a problem coughing this stuff up then I don't need the medication yet. This will more likely get worse as I get older, but for now it isn't that big of a problem...just gross for people who are around me a lot.

Ultimately, my lung function has declined. The biggest decline was in the size/volume of my lungs which affects my ability to get oxygen. I've noticed more as I've monitored myself that my stats drop more sitting than exercising. When I"m more relaxed, my breathing isn't as deep and therefore my stats drop. Which is good and bad at the same time. Exercise should still be possible and I've just got to remember to breath deeper all the time. He's assuming (and I agree) that fat is making it harder for my diaphragm to expand and that is why my lung size has decreased. He's hoping that if I were to lose some weight that my lungs would expand more. That's pretty motivating to lose some weight!!

I started pulmonary rehabilitation 2 months ago. They taught me some breathing techniques and different things I could do to help keep my stats above 90% while I work out. Currently I am using the things I've learned and applying them as I work out at our local rec center (BIG THANK YOU to my sis-in-law Malorie for watching Sullivan). I have a long way to go but support, love, and any encouragement would help along the way. Really though...anything to just feel better and breathe better will be worth it!!

If this post seems depressing, please know that it isn't. This is the norm for me, probably sounds worse than it actually is. In fact I am doing completely awesome. I remember seeing a pulmonologist a year or so after my accident and he gave me 10 years to live. Can you imagine how I felt after hearing that??

2 comments:

Anonymous said...

I'm so glad you're able to go to someone that's helping things out...you are amazing and will continue to do...I just know it!! Love ya Jen! :)

Anonymous said...

OH my baby girl! I love you so much. I was their when the doctor said 10 years. To be honest I did hear alot worse from doctors thru all that. You have defyed all the odds. And you will continue to defy them. Everyone sees the miracles around you. I'm so proud of you. Love,Mom