Skip to main content

Blog borrowing

 The following is a blog from "Breathing Deeply, Laughing Loudly, and Living Fully," another blogging CF woman. I haven't watched all the attached video, but I agree with much of what this blog says. I plan on watching the youtube video, and I hope you do, too. The video focuses on end-stage CF life, which I am nowhere near, nor do I plan on being close to any time soon. However, I know that many CF patients face lung transplants as the disease progresses. Kristie, the girl in the video, displays hope and joy, even while facing end-stage CF and all the problems that come along with it.

...

"I debated about whether I wanted to write this blog for a little while this morning.  I decided, ultimately, I want to share my thoughts about this topic.

A few weeks ago, I had heard from some of my English friends who also have CF, that a documentary was airing about a 21 year old CFer, Kirstie Mills.  Kirstie was in the end-stages of our disease and was placed on the transplant list.  During her time on the transplant list she was also planning her wedding, sure that no matter what the outcome, she wanted to spend the rest of her life with the man she loves.

This is going to sound terrible, but when I first heard about it, I was somewhat relieved it wasn't playing in the U.S. because I didn't think I could handle watching it.  I have known one person very closely, who has gone through transplant, but I never saw him prior to that. I'm going to be 100% honest right now and say that it terrifies me to think about the end-stage of this disease. I don't like thinking about not being able to walk without oxygen, or not being able to do the normal daily things that I currently take for granted.  I am petrified about the changes that come with end-stage disease.  So, I was glad I didn't have the option to watch it.

Then, I found out it was being aired in the United States under the title, Breathless Bride: Dying to Live.  Suddenly, I had to face the decision of whether or not to watch it.  I, sadly enough, chose not to watch it when it aired last night on TLC.  I just didn't think I could emotionally or mentally handle it last night. I didn't even DVR it.

This morning, I woke up and realized that I needed to watch it.  My sister-in-law had seen it last night, and I was honestly kicking myself for not watching it as it aired on the television.  After preparing myself for the tears that I knew would come, I found the link for the youtube version of the show, and I watched it in its entirety.  Yes, I cried. Yes, a lot.  But, there was more to it than that. I was truly, honestly, inspired by Kirstie's story. She maintained a sense of hope and optimism through the entire transplant process.  She showed me that while the end-stage of this disease are just as terrifying as I imagined it to be, it's not hopeless.  There are days that are better than others, and there is still love and hope and happiness during that time.  It's just always overshadowed by the hardship of breathing.

Kirstie's story had a very happy ending. She has received her new lungs and is doing wonderfully! I want to remind my readers one more time that CF effects every single person differently.  Kirstie needed a transplant at 21, but there is also an 84-year-old man living with CF.  CF is not a disease that can be easily defined.  That said, the following video provides a wonderful look at what the end-stage of CF looks like, and what it is like to be on the transplant list.  I hope you take the time to watch it, think about becoming an organ donor, and also think about making any sort of donation (time or financial) to the Cystic Fibrosis Foundation." --Megan


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…