Dear friends and family,
Hello! I hope you all are having a wonderful start
to 2016. It’s hard to believe another year has come and gone and here I am
again, writing my yearly CF letter. Since my last letter, I graduated Summa Cum
Laude from Baylor University with a bachelor’s degree in communication sciences
and disorders, a minor in linguistics, and BIC Honors. If you recall from my
letter last year, only 30% of CF adults graduate college, and I am so proud and
thrilled to officially be in that minority! Over the summer, I had a port
replacement surgery. My pediatric port just wasn’t cutting it anymore; it was
finicky and didn’t like to draw back blood.
My new port sticks out more obviously than the pediatric port, but it
works so much better! In August, I started graduate school at the University of
Texas at Dallas for speech pathology. UTD has one of the best speech-language
pathology programs in the country, and I am so thankful to be a part of the
program! At UTD, I’ve had the opportunity to take several interesting classes
and participate in two very different practicum experiences. I absolutely love
learning about my field, and I am excited to continue to learn and grow as a
clinician. After I finish this current semester, I will have three more semesters
until I graduate with my master’s degree. Grad school is flying by, and I’m
trying to soak up as much as possible!
Being in
Dallas has been an adjustment for me. It’s been hard to be in a new city with
new people in new situations. I had to switch CF care centers, which has been a
positive change. My new doctor is willing to try new things and does not resign
my current state of health to “my new baseline”. Toward the end of September,
CF was kicking my butt. My oxygen was low, and I was struggling to maintain my
daily activities. My doctor made sure that my numbers came back up and that I
returned to see her weekly until I was back stable again. In January, I went
inpatient at Clements University Hospital in Dallas for a few days. I went on
an antibiotic that I had previously had allergic reactions to about 10 years
ago, but my doctor wanted to try the antibiotic again because it might fight
the bacteria in my lungs better than the antibiotics I regularly go on.
Luckily, I had no allergic reaction, and I did three weeks of IVs at the end of
January through February. (Side note: I was forced to miss some of school
during the period I was on IVs, and my professors and supervisors at UTD were
AMAZING. They worked with me so I wouldn’t have to sacrifice either my health
or school). I also began participating in a Vertex study in January. This study
is supposed to target the underlying cause of CF and could potentially change
the face of CF treatment. It has been a privilege to be part of a CF study of
this magnitude, and I hope and pray this drug makes a difference!
This is the
time for CF research. Companies like Vertex are starting to really understand
CF and the best ways to treat, and hopefully one day cure, CF. By raising money
and awareness for cystic fibrosis, we are putting the spotlight on CF research.
Every donation, every prayer, every Facebook post, every mention of CF helps!
My family and I will be participating in the annual Great Strides Walk in
Austin on May 7th at the Austin Zoo. We would love for you to join
us! If you would like to sign up for the walk or would like to donate to the CF
Foundation (or both!), go to the link at the bottom of this page. Thank you all
so much for your love, support, and prayers! CF can’t be beat without the help
of dear friends and family like you all. I am very grateful to have all of you
in my corner!
Sincerely,
Emily Ingram
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