In the 1970s, when Luke Peters and Sammie Read were diagnosed with CF, their parents were told if they made it to their teenage years they would have done well.
Now in their 40s, the friends are still living with the condition.
Treatment has come on leaps and bounds in the past four decades, with Sammie feeling the benefits of a new drug and Luke a year into his recovery following a double lung transplant.
This year, classed as clinically extremely vulnerable, they have had to shield from coronavirus, yet they remain positive.
When Luke was diagnosed aged 13 months his parents were told the outlook was pretty bleak, however he remained fit and well throughout his childhood. It was not until he started working in the aviation industry CF began to affect him.
However, he carried on through his first career, then went to law school to retrain in his late 20s and became a solicitor in the city.
But just before his 40th birthday he was advised to reduce his working hours as CF increasingly took its toll, before he was forced to stop working altogether.
I was fighting a losing battle and trying to work even part-time was putting too much stress on my body, said Luke.
I was a stay-at-home dad for a few years with my son and then my daughter (now aged nine and six). But throughout 2016 my lung function was down to 20 per cent and I was told I needed to get on the transplant list. If I didnt, I might not survive.
Luke was on the list from January 2017 until May 2019. In that time he had two false alarms, when he was telephoned in the middle of the night and travelled to hospital for an anxious wait to see if the lungs were viable.
It was a case of third time lucky when, on May 1 last year, he received the third early hours call. After travelling to Harefield Hospital, in London, for the transplant surgery Luke was unconscious for eight days spending his 47th birthday asleep and spent five weeks in hospital.
Then I started making a slow recovery, clawing my way back to some sort of fitness again, said Luke.
Im now doing great. Ive gone from having a cough most of the day to not having a cough at all. It is literally life transforming stuff.
The family had looked forward to travelling this year following Lukes recovery. Those plans are on hold while Luke shields, but he has maintained a positive outlook.
We have basically not been out the house since the middle of March, but we are lucky to live on the doorstep of lovely countryside where we dont see anybody, so we can go for walks, said Luke.
I think, really, until a vaccine comes along it may be a case of staying in the four walls and only venturing to places where we wont come into contact with anyone.
People with CF are resilient. On the one hand lockdown has been tough, but in a way we are more used to it already. We are used to staying away from anyone who might be ill, we are used to time away from family and friends when we are in hospital, we are used to being aware of bugs out there. In a way, it has come as a tough thing, but its not something most of us with CF havent experienced to some extent.
Shielding has given Luke the opportunity to focus his attention on a project close to his heart his book.
While he had always intended to write about his life and CF experiences, being on the transplant list inspired him to put pen to paper to ensure his children knew more about him should he not survive.
When I went on the transplant list I spent a year coming to terms with it. It is a terrifying thing, said Luke
You dont know if you will be waiting weeks, months or years. It could transform your life or end it. There is a very real chance you wont survive the operation or the initial four-week period afterwards. The idea of writing a book kept coming back to me.
Luke started writing in September 2018 and by the time he had the transplant he had written 10 of the 20 chapters. After spending last summer recovering, he started writing again in September 2019 and finished in March.
He hopes to release the book in September and has launched a crowdfunding campaign to fund the self-publishing costs of Coughing It All Up. In addition to raising awareness of CF, the book will raise funds for the Cystic Fibrosis Trust, with 20 per cent of royalties going to the charity as well as a lump sum if the crowdfunding campaign reaches its 8,000 target.
I wrote the book for my kids, so they would know something about my early life, but now it has taken on a life of its own, said Luke, 48.
It is not just a book about CF and my double lung transplant, I have tried to throw in as much non-CF material as possible. It is about what you can do in life despite having CF.
I have managed to achieve some exciting things. CF is a serious condition, it does impair and impact, but in a way dont let it rule you and despite it being there, carry on and do what you want to do anyway. You have to get up and grab on to life and go for it.
I always say I am so lucky. I have CF, but I have also managed to do all these amazing things. I have done so much, so how could I sit here and think I am not lucky?
Donate at https://www.crowdfunder.co.uk/coughing-it-all-up
Sammie Read, who lives near Stowmarket, has started a new and life-changing drug during her time shielding.
Before lockdown I was told there was a chance I might be offered a new drug, Trikafta. My consultant requested for me to be able to take the tests three weeks into lockdown and I was accepted, said Sammie.
Within six hours of starting I could feel my chest changing. Trikafta is an amazing drug. Previously my lung function was under 40 per cent and it is now at 60 per cent. I cant believe that in three weeks on Trikafta I am not coughing at night and my resting heart rate has dropped.
It is not a cure, but it has made a massive difference to my life.
Sammie, who lives with her husband Ewan and two dogs, said she had missed going to the gym, which she visits four times a week as exercise helps to keep her airways clear.
But like Luke, Sammie has ventured into the countryside during the months of shielding, discovering footpaths she did not know existed despite living in Mendlesham for 30 years.
She has remained positive throughout, but said it hard been hard not being able to visit her son when he moved into his new home after lockdown began.
The one thing you want to do is support your child, said Sammie.
I have been so lucky living where we are.
CF people are very appreciative of life and every day we have. When youre little youre told you wont make your teens but last year I had a ball for my 40th and raised just shy of 20,000 for the CF Trust. The trust has kept me here.
For more information about CF Week, go to http://www.cysticfibrosis.org.uk
Continued here:
CF is a serious condition but you have to get up and grab on to life - Bury Free Press
- Lowe's Teams Up with Lionel Messi, Inter Miami CF and CONMEBOL Copa Amrica 2024 USA to Win Over Soccer ... - Lowes Corporate - April 20th, 2024 [April 20th, 2024]
- Canyon Endurace CF SLX 8 AXS Aero All in the name of speed and distance? - GRAN FONDO Cycling Magazine - April 20th, 2024 [April 20th, 2024]
- Porosome treatment targeting CFTR shows promise in CF models - Cystic Fibrosis News Today - April 20th, 2024 [April 20th, 2024]
- The Reign of Girls Generation's YoonA in Endorsements: The CF Queen - allkpop - April 20th, 2024 [April 20th, 2024]
- Lowe's Teams Up with Lionel Messi, Inter Miami CF and CONMEBOL Copa Amrica 2024 USA to Win Over Ftbol ... - Inter Miami CF - April 20th, 2024 [April 20th, 2024]
- The changing epidemiology of pulmonary infection in children and adolescents with cystic fibrosis: an 18-year ... - Nature.com - April 20th, 2024 [April 20th, 2024]
- Controlling anxiety is a key part of managing my health with CF - Cystic Fibrosis News Today - April 20th, 2024 [April 20th, 2024]
- Orlando City at CF Montreal: Three Keys to Victory - The Mane Land - April 20th, 2024 [April 20th, 2024]
- Learn to Evaluate (CF) using the Charts - Stock Traders Daily - April 20th, 2024 [April 20th, 2024]
- CF Industries and JERA Announce Joint Development Agreement to Develop Greenfield Low-Carbon Ammonia ... - Business Wire - April 20th, 2024 [April 20th, 2024]
- CF Montreal plays Orlando City in conference action - FOX Sports - April 20th, 2024 [April 20th, 2024]
- CF Montral: What is the ceiling for Josef Martnez's new team? | MLSSoccer.com - MLSsoccer.com - April 20th, 2024 [April 20th, 2024]
- Spotlight on CF Industries Holdings: Analyzing the Surge in Options Activity - CF Industries Holdings (NY - Benzinga - April 20th, 2024 [April 20th, 2024]
- Mamardashvili boast the highest spot-kick saves this season - Valencia CF - April 20th, 2024 [April 20th, 2024]
- Jaume Domnech: "I have the VCF DNA inside me" - Valencia CF - April 20th, 2024 [April 20th, 2024]
- MATCH RECAP: Inter Miami CF Earns 2-3 Win on the Road Over Sporting Kansas City at a Packed Arrowhead Stadium - Inter Miami CF - April 20th, 2024 [April 20th, 2024]
- Pavel "The Experiment" Dailidko: Undefeated in 2023 and Charging into BRAVE CF 81 this Saturday, April 20 - Black Belt Magazine - April 20th, 2024 [April 20th, 2024]
- JERA and CF Industries Holdings sing ammonia production deal - SAFETY4SEA - April 20th, 2024 [April 20th, 2024]
- Lowe's Teams Up with Lionel Messi, Inter Miami CF and CONMEBOL Copa Amrica 2024 USA to Win Over Soccer ... - PR Newswire - April 20th, 2024 [April 20th, 2024]
- CF Industries Holdings, Inc. (NYSE:CF) Shares Purchased by Mirae Asset Global Investments Co. Ltd. - Defense World - April 20th, 2024 [April 20th, 2024]
- CF: Milan to jump above Juventus in UEFA ranking for first time in 10 years - Sempre Milan - April 20th, 2024 [April 20th, 2024]
- Color Star's Partner Team Villarreal CF Bests Real Madrid CF Once Again As The Yellow Submarine Maintains Its Impressive Win Record -... - April 19th, 2023 [April 19th, 2023]
- Brave CF 70 Slovenia: Joilton Lutterbach vs. Andreas Gustafsson; Date, fight times, how to watch on DAZN - dazn.com - April 19th, 2023 [April 19th, 2023]
- Malaga CF owner Sheikh Al-Thani vows never to put the club he has run into the ground up for sale - The Olive Press - April 19th, 2023 [April 19th, 2023]
- CF Industries partnering with South Korea firm on $2 billion blue ammonia project in Ascension - The Advocate - March 4th, 2023 [March 4th, 2023]
- Cystic Fibrosis (CF): Causes, Symptoms, Diagnosis & Treatment - February 7th, 2023 [February 7th, 2023]
- Reg CF: 2022 Delivered A Decline For Investment Crowdfunding As Economy Slowed, But Expectations Going - Crowdfund Insider - February 7th, 2023 [February 7th, 2023]
- Cystic fibrosis life expectancy: Averages by stage and age - February 2nd, 2023 [February 2nd, 2023]
- Cystic Fibrosis Carrier: What You Should Know - Healthline - February 2nd, 2023 [February 2nd, 2023]
- Cystic Fibrosis: Prenatal Screening and Diagnosis | ACOG - February 2nd, 2023 [February 2nd, 2023]
- CF Moto to launch a retro mini bike, will compete with Honda Grom in the international markets, all we know so far - DNP INDIA - February 2nd, 2023 [February 2nd, 2023]
- CF Industries Holdings, Inc. (NYSE:CF) Short Interest Down 10.3% in October - MarketBeat - November 16th, 2022 [November 16th, 2022]
- Will CF Industries Holdings, Inc. (CF) Stay at the Top of the Basic Materials Sector? - InvestorsObserver - October 25th, 2022 [October 25th, 2022]
- Wanyama on Sunday played his last match for CF Montreal- Here are potential destinations - The Standard - October 25th, 2022 [October 25th, 2022]
- Scouting Report: 5 things you should know about CF Montral when they play NYCFC in the MLS Cup Playoffs - Hudson River Blue - October 21st, 2022 [October 21st, 2022]
- 2-year-old living with cystic fibrosis helped by new treatments - 11Alive.com WXIA - October 13th, 2022 [October 13th, 2022]
- Phage Trial to Treat CF Patients with Multi-Drug Resistant Bacterial Infections - UC San Diego Health - October 13th, 2022 [October 13th, 2022]
- High Blood-sugar Levels at Night Affect Lung Function in CF Adults... - Cystic Fibrosis News Today - October 13th, 2022 [October 13th, 2022]
- This 7-year-old is finally on a 'life-changing' cystic fibrosis drug. For others in Ontario, access is tricky - CBC.ca - October 13th, 2022 [October 13th, 2022]
- CF's Thomas and Easttam dodge Panthers' high-powered defense, tackle running offense head-on - Camden News - October 13th, 2022 [October 13th, 2022]
- The Difficulties of Diving Back In After Taking a Hiatus | Cystic... - Cystic Fibrosis News Today - October 13th, 2022 [October 13th, 2022]
- Cystic Fibrosis Market to Showcase Growth at a CAGR of 9% During the Forecast Period (2022-2032) | DelveInsight - PR Newswire - October 13th, 2022 [October 13th, 2022]
- Massive Predictions: Columbus Crew at CF Montral - Massive Report - September 9th, 2022 [September 9th, 2022]
- Why CF Acquisition Corp. VI Blasted 14% Higher Today - The Motley Fool - September 9th, 2022 [September 9th, 2022]
- Watch Real Betis vs. Villarreal CF Online: Live Stream, Start Time - For The Win - September 9th, 2022 [September 9th, 2022]
- Watch Getafe CF vs. Real Sociedad Online: Live Stream, Start Time - For The Win - September 9th, 2022 [September 9th, 2022]
- Mauro Icardi linked with move to Inter Miami CF - AS USA - September 9th, 2022 [September 9th, 2022]
- CF Acquisition (NASDAQ:CFVI) Rumble Takes On Traditional Media Outlets With New 'Rumble Exclusives' Liv - Benzinga - September 9th, 2022 [September 9th, 2022]
- SF Giants CF struggles on triple by Klay's brother - SFGATE - July 25th, 2022 [July 25th, 2022]
- CF Industries Holdings, Inc. Statement Regarding ITC Injury Determination Concerning Imports of UAN from Russia and Trinidad and Tobago - Business... - July 25th, 2022 [July 25th, 2022]
- CF man jailed in hit-and-run case - Leader-Telegram - July 25th, 2022 [July 25th, 2022]
- AEG and Socios.com Launch Partnership for the Inaugural Soccer Champions Tour Featuring Real Madrid CF, FC Barcelona, Juventus, Club America and Club... - July 25th, 2022 [July 25th, 2022]
- Taty Castellanos plays his final game for NYCFC in 2-0 home win - Hudson River Blue - July 25th, 2022 [July 25th, 2022]
- Padres' Fernando Tatis Jr.: Position Change to CF from SS 'Not out of the Question' - Bleacher Report - July 25th, 2022 [July 25th, 2022]
- CF Industries Stock: From Boom To Bust - Sell Into The Rallies (NYSE:CF) - Seeking Alpha - June 20th, 2022 [June 20th, 2022]
- CF graduates to chart their own paths to success - Valley Breeze - June 20th, 2022 [June 20th, 2022]
- Poirier: We need the strength of the fans" - Real Madrid CF - June 20th, 2022 [June 20th, 2022]
- Vertex to Present Data Demonstrating Significant Benefits of Long-Term and Early Treatment With CFTR Modulators at the European Cystic Fibrosis... - June 11th, 2022 [June 11th, 2022]
- Jayda Coleman, Oklahoma CF, robs Texas of a home run at the wall - Saturday Down South - June 11th, 2022 [June 11th, 2022]
- Gennaro Gattuso brings tenacity and technique to the Valencia CF dugout - Yardbarker - June 11th, 2022 [June 11th, 2022]
- 77-85: On to the league final - Real Madrid CF - June 11th, 2022 [June 11th, 2022]
- Gator Greats On CF Hall of Fame Ballot - ESPN 98.1 FM - 850 AM WRUF - WRUF - June 11th, 2022 [June 11th, 2022]
- Mariners CF Julio Rodrguez named AL Rookie of the Month for May - Seattle Sports - June 5th, 2022 [June 5th, 2022]
- CF woman charged with theft of trade secrets from former employer - Leader-Telegram - June 5th, 2022 [June 5th, 2022]
- Laso: The team were magnificent in defense" - Real Madrid CF - June 5th, 2022 [June 5th, 2022]
- The Austrian Wonderboy Returns To Action At BRAVE CF 59 in Uzbekistan - FightBook MMA - June 5th, 2022 [June 5th, 2022]
- Son Ye Jin Teases Fans With First CF Since Wedding to Hyun Bin - Kdramastars - June 5th, 2022 [June 5th, 2022]
- Fourth anniversary of the Duodcima - Real Madrid CF - June 5th, 2022 [June 5th, 2022]
- Meet the Avro CF-105 Arrow: The Long-Ranger Fighter Designed to Battle Russia - 19FortyFive - June 5th, 2022 [June 5th, 2022]
- Charlottetown to host professional soccer match between Sunderland AFC, CF Montral U23 teams - Saltwire - June 5th, 2022 [June 5th, 2022]
- Neutrophil Dysfunction in the Pathogenesis of Cystic Fibrosis (CF) - Physician's Weekly - May 21st, 2022 [May 21st, 2022]
- CF Industries Holdings, Inc. (NYSE:CF) Expected to Announce Earnings of $6.16 Per Share - Defense World - May 21st, 2022 [May 21st, 2022]
- Living with Cystic Fibrosis: A CF patient experience story | LHSC - London Health Sciences Centre - May 21st, 2022 [May 21st, 2022]
- CF Montreals Ismal Kon is showing impressive promise early this MLS season - The Athletic - May 21st, 2022 [May 21st, 2022]
- Film produced by CF native to be shown at Micon Cinemas - Leader-Telegram - May 21st, 2022 [May 21st, 2022]
- CF & CFRP Market Research Report by Carbon Fiber Materials, Resin Type, Manufacturing Process, End-use Industry, Region - Global Forecast to 2027... - May 21st, 2022 [May 21st, 2022]
- Experienced defensive backs for CF thriving this off-season - Camden News - May 21st, 2022 [May 21st, 2022]
- The 37th anniversary of Real Madrid's first UEFA Cup - Real Madrid CF - May 21st, 2022 [May 21st, 2022]
- Q&A: How a Cystic fibrosis diagnosis has changed in recent years - WRAL News - May 6th, 2022 [May 6th, 2022]
- Kinnear: Hope, Turning CF Into 'Cure Found' and Betting on the Long Shot - insidelacrosse.com - May 6th, 2022 [May 6th, 2022]