Skip to main content

CF Walk Letter 2018

Dear friends and family,

I hope this letter finds you doing well! My life looks pretty different this year from last year. In May, I graduated with my master’s in communication sciences and disorders. I started working as a speech-language pathologist in June for a company called SpeechCare, and in July, Eric and I got married. That was a very busy couple months! I love my job; I work mainly with adults with intellectual and/or social disabilities to help improve their communication skills. My clients bring me so much joy! I love being able to help them communicate better with others. Eric and I are also loving being married. Living with Cystic Fibrosis has taught us to never take the time we’re given for granted, and we are making sure we soak up all the moments we’re given and go on plenty of fun adventures. 

My health has been a bit of a struggle in the past few years. I had a round of IV antibiotics in May and then again in September and January. I will be starting IVs within the next month for my next round of antibiotics. I started going to pulmonary rehabilitation to try to help stabilize my lung function, and that has helped condition me a little bit. I continue to do 3 breathing treatments a day and take over 30 pills a day. 

However, there is exciting news. I am most likely going to be in a study starting at the beginning of the summer sponsored by Vertex for the triple combination drugs. These drugs have the potential to address the underlying cause of CF and could help my lung function increase pretty dramatically. We have a lot of hope that this study could be transformative for my health. We are (not so) patiently waiting for the study to begin. 

These new drugs are all thanks to YOU. The Cystic Fibrosis Foundation funds CF research, like Vertex’s drug developments,  from the donations they receive throughout the year. In the 1950s, many people born with CF didn’t live through elementary school. Now, many people with CF are living into their 30s, 40s, 50s, and beyond, all thanks to the never-tiring efforts of the Cystic Fibrosis Foundation. 

My family and I will be walking at the Great Strides CF Walk on May 20th in Fort Worth, and we would be so honored to have you walk with us. Great Strides is an amazing event, and it really is special to be part of. We also would appreciate any donations to the CF Foundation. Every penny helps us get closer to our goal of finding a cure for Cystic Fibrosis. Click on the link below to sign up to walk with us and/or to donate to our team!

Thank you for your continued love, support, and prayers.

With love,

Emily

Comments

Popular posts from this blog

The day that was yesterday

Wow. What a day yesterday was. Here’s what happened:
At around 4:45, my hand became numb and tingly. Because I’m a knowledgeable SLP, my first thought was “oh my gosh I’m having a stroke”. Although the numbness was my first (and only) symptom, it was so bizarre how my hand just all of a sudden lost feeling in it. About 5-7 minutes into the numbness sensation, it started traveling up my arm and reached about midway up my forearm. Due to my history of a PE and being on Amicar (a blood clotter) right now because of a lung bleed, pretty much the only option was to go to the ER. I called CF clinic, and they confirmed that I should head over there. The ER is the most disgusting place, especially in the middle of cold and flu season. They also apparently have never heard of CF protocol because I had to demand to be put back in a room immediately and for everyone who came in my room to be gowned, masked, and gloved. From the beginning to the end of the 5 hour ER stay, it was pretty disastrous.…

Thankful in the hard times

With a disease like cystic fibrosis, it can be easy to get lost in all the pain, fear, and frustrations and lose sight of what we have to be thankful for. This year has been rough. I started the year with a blood clot, quickly followed by increasing worry about the state of health care in America, all while losing a significant amount of lung function and dealing with way too many lung bleeds. However, no matter how hard the year, I believe it’s always important to reflect on the many blessings we have been given. It’s too easy to wallow in self-pity and pain otherwise. So this post is dedicated to just that—thanking God for all He has given me. 
I’m thankful for... My new husband ❤️. As I’ve said before, many CFers wonder if they will ever find someone who will choose to love them day in and day out with all the stresses that come with cystic fibrosis. Being the spouse of someone with CF is not for the weak or faint of heart. My husband has taken a crash course in medical terms, health…