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“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/

 

livvyhkhkjhk

 

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 and 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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“Part 1 of My Interview with Yukon Men’s Courtney Agnes; Girl Power the Tanana, Alaska Way”

 

courtney agnes1
Courtney Agnes

Please follow Courtney @:

https://twitter.com/SetlonoyegheeLn?ref_src=twsrc%5Egoogle%7Ctwcamp%5Eserp%7Ctwgr%5Eauthor

https://www.facebook.com/CourtneyAgnesTal/

Follow Me @:

https://twitter.com/jimjaxmedia?lang=en

https://www.instagram.com/jimjaxmedia/

My love for Alaska first started when I watched the amazing PBS special “Alone in the Wilderness”.  It was the story of the famous Naturalist Dick Proenneke who went to Twin Lakes and lived mostly alone for 30 years.  He made his own cabin, cache, tools, and anything else you could imagine.  He also filmed his adventures in a 2 part series called “Alone in the Wilderness” and I was hooked.  His cabin and building area is now on the National Register of Historic Places.  He was the king of sustenance living.

https://www.youtube.com/watch?v=iYJKd0rkKss&t=400s

http://www.aloneinthewilderness.com/

I don’t watch much network television anymore but when I first watched Yukon Men, I was hooked.  I approached Stan and Kate Zuray for interviews and they graciously agreed. Here are my interviews with them below.  Please support them!

https://jimjax4.wordpress.com/2017/05/02/my-interview-with-discovery-channels-macguyver-yukon-mens-stan-zuray/

https://jimjax4.wordpress.com/2017/06/16/discovery-channels-yukon-mens-hidden-gem-an-interview-with-kate-zuray/

Ironically the first person I asked to interview was Courtney Agnes. She had some things come up at the time, but she agreed to do it at a later date.  I enjoyed her personality and her ability to do whatever it took to get the job done.  I also liked her dad Pat a lot (Go Raiders Pat!) and the story of her mom Lorraine was a touching one.  Battling a dangerous aneurysm and arthritis, her mom was now a living miracle surviving a terrible ordeal.  Once the rock of the family, she now has to be the emotional inspiration due to her health issues that have been difficult for all.  The family takes care of her with a dedication and love that can be very challenging at times.  It’s obvious she is a huge part of the foundation for Courtney and her family, and the struggle is a daily one. Courtney’s mom’s amazingly kind and giving spirit has touched many people over the years.

Courtney and her dad Pat with another succesful fish run
Courtney and her dad Pat with a big fish haul

Courtney is the epitome of an Alaskan “girl”.  She is at home in the wilderness and can do whatever a man can do, but she also can show the maturity of a woman, mother and daughter which is needed in such an environment.  She’s done construction, dog mushing and can hunt.  When the family desperately needed a moose, she got it.  When Pat needed help with the dogs, she did it.

I also enjoyed her mischievous and fun nature. Courtney; and Alaskan women in general; show a huge strength and work ethic and passion for their families that is inspiring.  I live in California and though we have a lot of beautiful women on the outside, for some there is something major lacking on the inside. Courtney and many other women in Alaska may not be glamour girls, but their kind and vital spirit and passion for life and family creates an outer and inner beauty that makes the world a more beautiful place because they are in it.  I hope you enjoy learning about Courtney as much as I have.  Here is Part 1.

courtney agnes traditional
Courtney showing off some amazing traditional clothing

Jim Jax:  What were your first memories growing up in Alaska as a little girl. 

Courtney Agnes:  The most prevalent memories that I have of growing up in Alaska as a little girl had taken place at fish camp. I think I started climbing trees at the age of three, and by age 5 I had excelled at climbing.  I would often climb 20-30 foot tall trees.  One time I climbed a smaller willow tree to the top and after it bent over from my weight, I had to scream for my dad and he had to catch me from about 20 feet as I feel out of the tree.  I also have amazing memories of dog mushing with my dad.  He stayed home with me while mom worked and I would ride a snow racer behind a team of dogs that pulled both my dad’s dog sled and I.  We were always outside doing something together; mostly working; but he always made work fun.

courtney cuppy archie and carrie
The fam; Courtney, Cuppy, Archie & Carrie

Jim Jax:  Growing up as a kid, what fun activities did you do outside of working?  Who influenced you?

Courtney Agnes:  Growing up with the parents that I had, we didn’t have much time at all for play, because we were always working.  I mean, my girls don’t even know the meaning of chores compared to my brother and I back in the day.  From the time that I turned 8 years old, I never had a real fancy, huge birthday because we were always cutting fish from 7 am to 12 am in the summers.  We survived from making a living off of selling the fish that we cut.  The fish could be jarred, and put away for the winter so the entire family’s help was vital.

We were super lucky to grow up with thousands of cousins to play with.  We even played baseball games on the airport runway, which was located next to mom and dad’s camp.  I did have a tight knit group of friends who all took turns helping each other do their chores in order to play. We mostly raced our four wheeler ATV’s around town at break neck speeds, jumping them anywhere we wouldn’t get caught. There wasn’t much else to do, other than invent games of our own because we didn’t have the luxuries that the city provided.

courtneys confirmation
Courtney and her dad Pat at her Confirmation

Jim Jax:  Every family has stories; what is a good story while you were a kid

Courtney Agnes:  Here is my absolute FAVORITE story of the adventures of my oldest brother Thomas and I.  When I was about 8 and he was 12, (I was all knees and elbows then) during the summer he and I were left home at camp together.  We always had chores to take care of, like watering the dogs, watering the garden, and many other things.  Mom and dad always went to work and we were left alone to be savages.  Dad found a parachute at the dump that was discarded, and Thomas pulled it out and decided to play with it.

It was a windy day so we strapped him in and he tried to launch himself on the airport runway.  I really do not know what he was thinking, but it didn’t take off, so he said we needed to go down to the beach.  (I was at the age where I had to do whatever he said because he would have killed me if I didn’t).  I stood back and held the parachute end up and FREAKING A if he did not take off like a rocket!  He didn’t take off in the air, but the parachute did and it started dragging his limp butt about a 1/4 mile up the river on the beach over rocks, mud and sticks.  He was moving faster than this skinny ass girl can run after him slipping in the mud the whole way.

As I’m watching him being drug like a limp noodle, he was screaming at me saying, “Siiiiiiiiiiiiis, heeeeeelp meeeeeeeeee.”  He was terrified and I was running so hard that I slipped in the mud too.  At one point I was laughing so hard that I couldn’t even get up out of the mud.  Finally the parachute strings caught on a log and it stopped him. He had bruises and scratches all over his body and was sore for days.  This is just one of the amazing stories I have of my brother.

being silly carrie courtney and cuppy
Funny Face time with Carrie, Courtney and Cuppy

Jim Jax:  Was there ever a time as a teenager where you wanted to leave Alaska and go somewhere for college and leave the lifestyle behind?

Courtney Agnes:   When I was a teenager, I couldn’t wait to leave Tanana.  I hated it.  I hated being so confined to one place without many outlets which is typical teenage stuff. I always dreamed of going out of state to college, but I didn’t know what kind of career path that I wanted to pursue so I played it safe and went to college in Anchorage.  Before I moved away my dad called it. He said that I’d miss Tanana and I would be back. It took 1 year in Anchorage and 4 years living in Fairbanks for me to decide to come back home. I disliked the monotonous everyday driving place to place, fighting crowds and paying for any kind of small activity that was to get me out of the house. Everything cost money, and here in Tanana all we have to do is buy gas and we’re gone for the weekend camping on a sandbar or crashing through the forests chasing a moose for dinner.  I still love to travel though and Europe is on my bucket list of places to visit.

courtney alaskan traill sunset
Peace; A girl, her dogs and an Alaskan Sunset

Jim Jax:  You have a close relationship with your mom and dad.  We’ve learned about your dad Pat, but please tell people what type of person your mom is?

Courtney Agnes:  My mom worked my entire youth to support our family and was always taking care of something or someone, no matter how tired or exhausted she was. We always had different kids staying with us for extended periods of time, whether they were cousins or kids that wanted to go to school in Tanana (the school used to be pretty big in my youth).  In college, if I ever needed money, $500 would show up in my bank account.  She was always a giver. Before her aneurysm she had a really close relationship with our oldest daughter, Cuppy. Cup would run over to Gramma’s because she would spoil the crap out of her.  The aneurysm really changed mom.  She became fully disabled and unable to do a lot of things, but she constantly still worries about all of us in everything that we do.  She also lives vicariously through me in wishing that she can race dogs still.  She always cries before any of my races. She’s so tough physically when she wants to be though. I really don’t know anyone else who might have survived the scale of aneurysm that she survived.

Please come back tomorrow for Part 2 of my interview with Yukon Men’s Courtney Agnes.