Skip to main content

Lost the battle

Today, Leslie lost her battle to Cystic Fibrosis after attempting to receive a double-lung transplant. Leslie was a family friend who grew up three houses down the street from my mom and was closely connected to both my mom's and dad's families. She battled for her life for 51 years and exceeded expectations of a normal CF life expectancy for a girl born in the 1960s.

I never knew Leslie, thanks to cross contamination issues (CF patients really shouldn't be in close contact with others because we can pass bacteria easily from one CFer to another). However, even with my limited knowledge about her, I looked up to her so much. When the doctors and nurses told me that a normal CF life expectancy was in the mid 30s, I felt comforted that Leslie continued to live a vibrant life. It's one thing to be told that you can live with CF, conquering the challenges it constantly presents. It's another thing to really know that anything is possible, including living with CF without limitations. I knew I could fight CF because Leslie was fighting alongside me. It sounds kind of silly, but Leslie's long battle gave me strength to fight my CF.

My aunt posted this facebook status as a tribute to Leslie's life. "Praying for the family of Leslie who lost her battle with Cystic Fibrosis today. Praying for God's peace and comfort as you mourn and move on with life. Leslie was a great warrior who knew how to LIVE!" Please pray with me for Leslie's family and friends as they mourn her loss after a valiant fight with CF. And even amid the heartache, know that Leslie is now joyously praising her Lord and Savior.


We need to fight against CF so that people do not have to experience the death of a loved one to such an awful disease, like Leslie's friends and family. I cannot wait for the day to be free from CF!! I'm praying for a cure to come quickly, and I hope you are, as well.

Comments

Popular posts from this blog

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 ne…

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…