Claire Wineland is a 17 year old YouTuber and founder of Claire’s Place Foundation, a nonprofit organization dedicated to helping people with cystic fibrosis.
Photographer Ian Pettigrew published a portrait book, “Just Breathe,” with striking photos of adults with cystic fibrosis to raise awareness of the life-threatening condition and give hope to young people with CF.
There are songs about happy times, songs about sad times and songs you don’t understand until you hear the lyrics. These are the songs I like most — the songs that are the most heart-wrenching. I really have a hard time dealing with my multiple chronic health conditions, including cystic fibrosis. But I intend to carry on with these songs:
1. “Fight Song” by Rachel Platten
Sort of a no-brainer, right? This song describes anyone with health challenges. It persuades me to fight on when people bully me or when I’m sick.
2. “Overcomer” by Mandisa
This song is similar to the one above, with a Christian emphasis involved. The music video showcases people who have overcome obstacles in life, no matter the circumstances. I included this one because it is based on my faith.
3. “Bad Blood” by Taylor Swift
This one may be surprising because it’s not exactly inspirational, but it tells the truth about living with chronic health conditions in that someone with a chronic health condition is sometimes in a fight for their life, even if you can’t see it on the outside.
4. “Hallelujah” by Pentatonix
This popular song is based on the story about David and Bathsheeba in the Bible. It tells how the world is broken like it is because people do crazy things, like kicking a person out due to a situation they sometimes cannot control due to their health condition. But, as my pastor said, sometimes you don’t get what you want, but you get what you need. David didn’t get to build the tabernacle, but God had bigger plans for him, just as I believe he does for me.
And last but not least…
5. “I Lived” by OneRepublic
This song is really great for the cystic fibrosis (CF) community because someone with CF is featured in the music video. It shows how someone really lives with the disease firsthand.
All these songs reflect my struggles with multiple chronic health conditions and help me to be a stronger person.
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I have been living with cystic fibrosis since birth. I was lucky that I was diagnosed early and started on medicine straight away. Both parent need to have the faulty gene for the child to have CF. Once both parents have the CF gene, there is a 1 in 4 chance that the child with have the illness.
Cystic fibrosis is a chronic illness which primarily affects the lungs and digestion. There is a defective gene which causes the body to produce thick and sticky mucus. This mucus builds up and clogs the lungs, which lead to infections. It also obstructs the pancreas and its absorption of nutrients. Along with these aspects, people with CF can develop CF-related diabetes, osteoporosis, liver problems and many more complications.
There is a brilliant campaign at the moment: the straw selfie. This is where someone takes a selfie with a straw in his or her mouth. You have to breathe through the straw with your nose blocked off. If you do this for 60 seconds, it will give you a small insight into what it is like to breathe like someone with cystic fibrosis.
On a day-to-day basis I had a medication to take both orally and inhaled, along with physiotherapy. With meals containing fat, I needed to take enzymes to help absorb the nutrients. Each morning and evening I would take medication to open up the airways before doing physiotheraphy for 20 minutes with a device called a Bipap. This device is a type of ventilator which helps open up the airway and loosen up the mucus clogging the lungs to get it off the chest. Following this I had an inhaled antibiotic as a preventative to keep my lungs from getting an infection. This was then repeated in the evening, following more medication in the afternoon.
It was also important to exercise my lungs to keep them strong and in the best shape they could be in. I am a personal trainer, so I enjoyed this aspect. I used to do 20-30 minutes of cycling daily, just as a preference, in the morning. In the evening, I would do resistance work for about an hour, or some Pilates. The fact that I have a good base of fitness has helped me when I get infections in terms of my body recovering.
I was fairly healthy throughout my life. I played football up until I was an adult and was always in the gym. People see someone who looks healthy and don’t realize they have a lot of health issues on the inside. People with CF get “but you look so healthy” a fair amount, especially in my case at the gym. (Although I took this as a compliment.) CF is very much an invisible illness.
Just as I started to break into the fitness industry, my health declined. In the last two years I was in the hospital every two months with an infection. My lung function started to decline, and I lost 33 pounds. In January one of my lungs collapsed. I was then started on the process of getting onto the lung transplant list. With CF, both lungs have to be transplanted; if one lung was transplanted then the “CF lung” may infect the new lung.
On August 24, I got the gift of two new lungs from an amazing donor whom I can’t thank enough. With my good base of fitness work, I have recovered quickly from the operation. I will now be on anti-rejection drugs and medication to keep my new lungs in the best shape they can be. I will no longer have to do physiotherapy with the Bipap but will continue to take inhaled medicines, oral medicines and enzymes. Obviously as a trainer, fitness will be a huge aspect of my post-transplant recovery. I’m six weeks post-transplant now and doing extremely well. I seem to be the exception when it comes to exercising; the exercise they want me to do is too easy, but until my chest heals from the surgery I am not allowed do much more.
For the first three months, I have to be careful about a few things. I can’t eat takeout, as I have to be careful about getting food poisoning. I’m not allowed drive in case I’m in a crash because the chest still has not healed properly. I can’t take public transport or be in a crowd of more than two or three people due to the risk of infection. The fewer amount of infections I get, the longer the lungs will last. Once the three months are up I hope to slowly get back into the gym and working. My main aim is to get back to personal training and begin working with athletes/sports teams.
If there is any wisdom I could impart, it’s to get out and exercise if you can. Our bodies can do amazing things, and I know the amount of effort I put into getting my body right before the transplant has helped me recover extremely quick. Imagine what you can do with a healthy body and exercise.
Editor’s note: Please see a medical professional before starting or stopping any medications or taking up an exercise regimen. This piece is based on an individual’s experience.
Follow this journey post-transplant back to personal training by liking Luke’s Facebook page transplant2trainer, or you can follow on twitter (@lukedotsey) and Instagram (transplant2trainer).
“You’re so lucky you have mild cystic fibrosis.”
I‘ve heard many variations and phrasings over the years – but they all meant the same thing: how lucky I was that I “only” have mild CF.
Because I didn’t feel lucky.
I felt different.
There were nights and days I spent in constant pain, coughing until my head pounded. My ribs felt like they had been bruised from the inside and my back had nearly seized in pain. If that was lucky, I didn’t feel it then either.
The night I coughed up mouthful after mouthful of blood for hours on end? Was that when I was lucky? Because I’ve always thought that was the single most terrifying night of my life.
And I sure didn’t feel that lucky when I was in end stage respiratory failure on oxygen waiting for new lungs.
So how does someone who is supposed to be “lucky to only have mild CF” end up in respiratory failure?
Having a mild dose of CF is a fallacy – a bit like saying someone is a only a little bit pregnant. CF is a progressive disease, and like any progressive disease you progress through the stages.
Everyone’s journey is different.
Some people with CF stay in the “mild” stage for years with minimal intervention. Others work damn hard to keep their CF in a mild stage. Some people go through a steady decline, and others decline rapidly.
Until people with CF reach the end stage of the disease it easy to think luck is a component. But like any invisible disease, people on the outside don’t see the hours of work put into maintaining our health.
So was I lucky I stayed in the mild stage of the disease until I reached my early 20s?
My good fortune was that Lady Luck gave me a family that invested hours into keeping me healthy. I underwent endless physio sessions, day after day – but those treatments didn’t happen by themselves.
Someone had to sit with me and physically do my therapy.
They never once let me off the hook.
Not when I was tired, or sick, wriggly or yelling.
Not when I was too hot or just plain couldn’t be bothered.
Not one single time.
Physio came before everything. Always.
I was lucky I had a family who never gave up.
Follow this journey Sandi Parsons, Proud Book Nerd.
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