“How One Cystic Fibrosis Patient is Thriving & Not Just Surviving; The 29 Year Journey of Livvy”

*Please Follow Livvy on Instagram, Twitter, and her popular blog:

https://www.instagram.com/seabreezecorner/?hl=en

https://twitter.com/seabreezecorner

https://seabreezecorner.com/about-me/

*Please follow the Cystic Fibrosis Foundations of the U.S. & the U.K.

https://www.cff.org/

https://www.cysticfibrosis.org.uk/

 

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southport lord street
Southport in Merseyside, England

In the beautiful seaside city of Southport in Merseyside, England, a scared 13-year-old girl first became aware of a monster that was literally attacking her. After begging her parents to take her home, she stayed in the hospital for days.   At a time when Olivia; or Livvy as her friends and family call her; should have been thinking about cute boys and spending time with her friends, she now realized that she was in for the fight of her life.

livy hospital

Livvy found out she had Cystic Fibrosis. Cystic Fibrosis is a progressive, genetic disease that causes persistent lung infections and limits a person’s ability to breath. In people with CF, a defective gene causes a thick, sticky buildup of mucus in the lungs, pancreas, and other organs. Year’s ago it was a death sentence with many passing away in their teens, but now the lifespan has been increased to 50 y/o with research increasing that number every year. In the U.S., famous former NFL Quarterback Boomer Esiason started a CF foundation that has raised millions for research after his 2-year-old son Gunnar was diagnosed with the disease. Gunnar is now 26 and is an advocate for CF with a fantastic website. Below are both websites to these highly regarded advocates.

https://www.esiason.org

http://www.gunnaresiason.com/

Blausen_0286_CysticFibrosis (1)

Growing Up With CF:

“I grew up an only child,” Livvy explains. “And that was mainly because my parents were afraid they’d have another child with CF. The kids at school never teased me but I was in the hospital every 3 months, which made it hard to make close friends. When people tried to get me to tell them what was wrong with me, I’d always tell them I had an asthma condition”.

When you have CF, it is a constant stress in dealing with the people around you as well. “I got my first boyfriend at 16 and even though he understood my disease, he kept it away from his parents fearing they would no longer allow him to see me.   When he would visit me in the hospital he would have to lie about my condition. I’m 29 now and I have an understanding boyfriend but I still feel a pressure from his family thinking I’m not good for him because I can’t have any kids”.

livvy

Not only do patients have to fight the stigmatism of having a terrible disease, but they also have to endure a daily ritual of medications and treatments. Few diseases take this much effort to keep oneself healthy. Another characteristic of CF is low body weight and depressed growth. Many with CF look much younger than they are due to this factor.

livvy hospital

The Daily Battle:

The daily routine for a CF patient is a grind that can’t be compromised. “I wake up hopefully after a good night’s sleep” Livvy says. “A good night for me is waking up twice to cough up mucus off of my chest. A bad night is when I wake up every hour, or not being able to sleep at all due to the coughing”.

Treatment starts right after she wakes up as she takes 2 medications through a nebulizer called an eflow, which delivers the medications rapidly. This takes half an hour. She then has to try and do breathing exercises to bring out more mucous which seems never ending. She then takes another type of inhaler and tries to get a bite to eat. “I also have CF related diabetes which makes eating consistently really important”. After breakfast she takes more medications, which includes prednisone, which helps her breathing, but it can worsen her diabetes and thin her bones.

e flow nebulizer
Something Livvy has discovered is that being physical fit and going to the gym for an hour a day is essential for improving her health. “I have to go every single day or my lungs suffer because of the mucous buildup. When the mucous starts to build up it’s just like I’m drowning. I do mostly cardio on a treadmill, an incline, or a rowing machine, as well as lift weights. When I return home I eat a high caloric lunch to keep my weight up and drink an Ensure supplement”.

The rest of Livvy’s day is an interval of taking medications to keep her lungs open and to eliminate the mucous, which makes breathing easier.   In between these treatments it’s also important to continue to eat enough calories to keep her weight up, and then checking her insulin to make sure it’s at a normal level.

”I hate going into the hospital for a 2 week course of IV therapy, which mentally can wear me out. Even though I am lucky enough to be able to drive home between treatments, I do have to sleep there. That leaves a lot of time by myself as we all have our own rooms on the CF ward”.

The UK Drug Controversy:

http://www.pmlive.com/pharma_news/nhs_england_to_vertex_come_clean_on_orkambi_offer_1244686

Whenever profits are placed over patients, the patients always lose. Such is the case for the latest CF drug that has not been released in the UK yet because the drug company and the governmental agencies are fighting over a price. The patients that need the medications wait and can only hope of getting a drug that could greatly help their condition while rich people in suits push papers and look at dollar signs. The drug companies obviously want to get every pound or dollar that they can out of the selling of the drug, and the governmental agency wants to pay as little as possible. “All I hope is that I don’t die before the drug is finally approved” says Livvy.   “On bad days my lungs are bordering on now needing a transplant and I get frustrated. It’s ok to have a bad day and to feel bad, but you have to rebound. I can quit or just keep working hard to keep as healthy as possibble and try to be positive. I choose the latter”.

(below is a video of a day in the life of a CF Patient)

https://www.youtube.com/watch?v=qmzvCnt5cHA

livvy final

A Positive Outlook:

Livvy, like so many CF patients, is an inspiration. Their positive outlook against a terrible foe touches and motivates many around them. She has a growing Instagram and Twitter page as well as a positive and fun blog where she shares her life and her story. “If you have CF”, encourages Livvy,”then PLEASE exercise and work out every day. Also you need to have dreams.   I want to get a house with my boyfriend and work on the side part time, or even volunteer. CF patients find it very hard to work full time but right now I’m working on being as healthy as I can be”. Presently Livvy gets the UK version of what we call disability in the U.S.   She is close to her family and looks to grow her online fingerprint while improving her health.

Livvy’s health sometimes can wear her out physically and mentally. “I’ve struggled at times and it is hard to do so much to just keep my health at a stable level.   Sometimes I worry if I will ever get to use the new medication that I know would help me. What I am going to do though is keep fighting, and keep doing what my doctors tell me to do. I want to be a warrior, and not a worrier”.

livvy dog
Livvy celebrates her dog’s 11th birthday

About 16 years ago a young 13-year-old girl first saw the monster that was attacking her. Through perseverance, hard work, and great determination, she now is a lovely adult woman looking ahead to the future. It’s definitely not easy at times but she fights for every breath and every moment. With her family and friend’s support and the help of her medical team, my money is on Livvy. She is proving to be a small package of heart and spirit who is taming her goliath with a positive energy and a smile, while inspiring others along the way. A CF Warrior indeed.

 

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