Andy Bright, Community Fundraising Officer at APF, talks about his 12 year journey with pulmonary fibrosis and he’s made it his life mission to support others.
UPDATED 2024
The LONG road to diagnosis
I had been involved with APF as a patient since 2016 but my story started ten years previously. I first noticed problems with my breathing in 2006 when I was 42yrs. I went to my GP, who said it was nothing to be concerned about. I was still physically active, playing badminton, squash, golf and football. A year later things changed dramatically. I’d developed a horrible cough, which was pretty much 24/7, and I practically had no voice. This was the beginning of my six-year journey to get answers.
My wife would call up in the morning as I was getting ready for work, “Would you like a coffee, I would answer with one clap for yes and two for no. I had to carry a notepad around as sometimes I couldn’t speak at all.
The results of my lung function tests were in decline (in 2006, my lung function was 60% of what a “normal” person should have by my age, and by 2012,
In 2010, I got myself referred to a voice therapist and, after six months of treatment, taught myself to talk again. My breathlessness was getting worse, and the results of my lung function tests were in decline (in 2006, my lung function was 60% of what a “normal” person should have by my age and by 2012, it was down to 45%).
In Sept 2012, after six years of various “…oscopies”, biopsies, tests, CT scans my consultant in Birmingham said that it was relatively stable and that he would see me for a routine appointment in 12 months.
When I played sports, my motto was “Never Give Up”, and so I applied it to my current situation.
After further research, I saw a cough specialist in Leicester who, in turn, referred me to Dr Gisli Jenkins who, finally arrived at UIP (Usual interstitial pneumonia, PF by another name).
I was 49, my career in Insurance Management was a distant memory, my salary was a third of what it was (which brought inevitable financial problems), I could no longer participate in sports (which was something I loved), and I could not pick up my grandchildren off the ground yet alone carry them proudly on my shoulders like I did their mother when she was young.
In Dr Jenkin's opinion, I would need a lung transplant within 2-3 years. However, he admitted that each case was different and that it could be sooner or later.
We had tried all sorts of treatments during the previous seven years, and none of them had been able to stop the decline, but he did say that there was anecdotal evidence that chemotherapy “could” slow the rate of progression (by now, my lung function was down to 34%).
So, faced with that information and my “Never Give Up” motto, I said, “Let’s try that then”.
Waiting for THE CALL
Fast forward to August 2018, and I’m still holding on, barely, planning each day carefully and using supplemental oxygen. By now, my lung function was down to 21%, and should it drop a little lower, the machines will not be able to register it.
Without a lung transplant, it was likely that the next Christmas, if I made it, would be my last. I was 54.
I would not get to see my grandchildren grow up (I then had four), I would not be able to walk my daughter down the aisle, and I was pretty sure that I wouldn’t see my beloved Villa back in the Premier League. So, I carried on carefully planning each day and getting to the end of it, without major issues, I considered a success.
On 6 September, my wife Jill and I went out to dinner to celebrate our 32nd wedding anniversary. I held Jill’s hand to tell her that I had finalised all my funeral details and that when death came, there was an envelope in my office that contained all the information that she and the children would need in respect of my “send off” and everything relating to household bills etc. It also contained the music I wanted playing…including “Always Look on the Bright Side of Life”, OBVIOUSLY!
We had a lovely meal and agreed that whatever time we had left, we would, I was able to jump in my car and visit patients, carers, healthcare, continue to focus on enjoying ourselves with our wonderful friends and family, our three supportive childrencontinue to focus on enjoying ourselves with our wonderful friends and family, our three supportive children, and their partners, and our beautiful grandchildren.
THE CALL
But on 18 September at 01:20 in the morning, I received THE call!
“Hello, is that Andy? We may have some suitable lungs for you…do you still want to go through with the transplant?”
I was there within half an hour (my bags had been packed and in the boot for ten months as per hospital instructions).
The lungs went in…there were “speed bumps” concerning my heart, kidneys and a couple of other things, and so they kept me in a coma for eight days.
After six weeks in hospital, I was allowed home. I had now entered what I called our “Brave New World”.
Although I no longer had PF I had continued to be involved with everything PF related and organ donation. At the end of 2021, I was checking the APF website and was immediately struck by a vacancy for a support group coordinator position at the charity. An opportunity to offer the best support available to people around the UK seemed too good to be true. I was delighted to be appointed and began my new role in January 2022.
I look forward to working with patients, carers, healthcare professionals and the dedicated team at APF in all areas of support, research, education and campaigning.
The pandemic has been tough on us all. Like many others, I have lost friends from my fibrosis family, my transplant family, my blood family and friends during this terrible ordeal.
Despite shielding for two-thirds of my Brave New World, I have reached many major milestones:
• taken the whole family to Disneyland Paris
• witnessed the arrival of our 5th grandchild, Ada
• won a medal in badminton at the British Transplant Games
• seen my son graduate from university
• seen my eldest daughter enrol for her degree (that makes it three from three)
• abseiled down the “Holte End” at Villa to raise money for APF
• received a Special Recognition Award from the CEO of the Birmingham City Council
• walked my daughter down the aisle
• been able to watch my grandsons play Sunday morning football for local teams
• enjoyed simple days out with my family
• take my granddaughter to a special nine month empowerment course for teenage girls organised by Aston Villa (she has had stadium tours and been mentored by players from the WSL)
• bought a motorcycle with which I intend to ride from John O’Groats to Land’s End to raise money for APF and organ donation
Now, I have the opportunity to make a real difference in the fight against PF.
FEBRUARY 2024
It's been two years since I originally wrote this, and during that time, I've been involved in so many wonderful things with APF that I felt this needed to be updated, particularly now that I have changed roles.
During the pandemic, I was locked away from the world for almost two years.
As a regional support coordinator I was able to jump in my car and visit patients, carers, health care professionals and anyone else who asked me to talk about my journey and the work of APF.
I've been able to do so much in these two years, not only in my personal life but in raising awareness of pulmonary fibrosis and organ donation.
Here are some (there are a lot more, which you can see in Britey's Roadshow maps below).
I've only included highlights where my work with APF has taken me (well, there might be the odd personal ones).
I was invited to the Lung Transplant Summit as a patient representative.
All of the major transplant centres were represented, and I sat with members of the team from QE Birmingham.
I understood most of it, but Richard Thompson, my consultant, would talk me through some of the trickier medical subjects.
After two years of shielding and being vigilant, I caught COVID...but I still flew the APF flag.
My body was doing its best to fight the virus, given my suppressed immune system.
And after 17 days, I beat it...Never Give Up.
Personal one... Jill has always loved swimming and I'd promised her that I'd take her if the Olympics or Commonwealth Games ever came close to us.
The new aquatic centre was built on a site just around the corner from my childhood home, where I played football with my mates.
A lovely lady who had lost a loved one to PF invited APF to join her at a community event in Walsall.
It was a well attended event and I talked to lots of people about our work.
I even got to meet the Mayor of Walsall and a lovely police officer who I talked into doing a parachute jump with me.
Sadly, I was unable to do it as my transplant medication has given me osteoporosis.
Jumping out of the plane isn't a problem...it's the landing.
However, the police officer is going to join me on part of my JOGLE ride with, hopefully, some of her fellow officers.
It was a momentous occasion when APF could broadcast to the United Kingdom on BBC's Lifeline Appeal
BBC weather presenter Sarah Keith-Lucas explored how APF is changing lives through support in the community and funding vital research.
Sarah also appeared on Celebrity Mastermind representing APF, and she won...thank you and well done, Sarah.
A really, well attended support group. This is at the centre of everything APF does.
However, I have attended a support group where there were only two people...they both went away having learned something and that made it a worthwhile visit.
When I wrote the original post, I was five months post-transplant.
I had no idea that three years later, I would be working for them.
I recently had a heart to heart with Jill about my PF and Tx journeys and we both agreed that my whole life appeared to be leading up to this.
Presenting a petition to 10 Downing Street for The Forgotten 500 supported by Daisy Cooper.
Personal one...and work, actually. Getting tickets for a Villa home game is hard, but getting nine seated together at the front?!
Anyway, one day, I received a notification email from Villa that tickets were on release for the home game following my birthday.
I jumped online 1 minute after they went on sale and secured tickets for myself, four of my grandchildren, Jessica, Alex and Azz and Rob (my two son-laws ).
I came downstairs and announced what I'd achieved to Jill, with more than a little smug satisfaction.
Jill thought about it and said, "Isn't that when you are in Peterborough?".
Therefore, I asked my elder brother, Dave, to stand in for me and regale the children with tales of yore when he and Dad followed the Villa through the highs and lows.
Alex couldn't make it either, so Jay, my nephew, stepped in.
I may have missed the game, but spending two days with my brilliant and dedicated colleagues was worth it.
Back Row R-L - Jay, Rob and Azz.
What a couple of fantastic days we had.
Hundreds of people came to our stand and left with a better understanding and appreciation of what it is like to live with pulmonary fibrosis.
Another day and another wonderful support group.
Personal one...I was privileged to talk to ITV about the importance of organ donation and the British Transplant Games.
I didn't really prepare for this one.
My legs are playing up, so I didn't do the badminton and chose darts, snooker and bowls but no medals this time.
However, it really is "the taking part that counts".
I'm currently considering my choices for the BTG Nottingham 2024 games.
Another example of APF making a difference.
Since 2014, I've had a sideline gig.
I help with SWBNHST, give talks to medical students and participate in the examinations as a subject.
These are the future GPs and consultants.
Hundreds have now gone away knowing a little more about pulmonary fibrosis.
Personal one...I'm still amazed by things that I would have taken for granted 20 years ago.
An event supported by APF
I was part of a panel speaking to NHSBT about our transplant journeys and the work of APF.
Personal one...what an honour to say a few words and turn on the lights.
APF's 3rd Patient Day, and I spent it with the lovely people from the Exeter Pulmonary Fibrosis Group
And to end with (almost) what I call my Reasons to Never Give Up
2024 is going to be a special year for me and my family as I will turn 60, have two more grandchildren and ride my motorcycle from John O'Groats to Lands End...and no doubt, many other landmarks.
I shall update with milestones throughout 2024
April 2024
Please welcome to the world little Leo Aaron Andrew T******
A 60th surprise birthday party, a birthday I didn't think I'd live to see.
June 2024
Please welcome to the world little Roman Theo
September was Pulmonary Fibrosis Awareness Month and my two older brothers, Dave and Mike spent two weeks with me travelling the length of the UK in a motorhome and on my motorbike.
Along the way we spoke to many people whose lives have been touch by PF and we also raised over £2,000.
In all of my 60 years I've never had a crossed word with my brothers and I'm pleased to report that still remains despite living on top of each other for 14 days...motorhome life is not for me.
October 2024
Before I had PF Jill and I took the children to Italy to enjoy family holidays and we always wanted to got to Rome.
However, we never thought that would happen because of my illness but WE MADE IT!
THE STORY WILL CONTINUE
Congratulations on making it to the end.
NEVER GIVE UP
If you would like to learn more about living with pulmonary fibrosis or need support, please get in touch.
CAN YOU HELP US RAISE VALUABLE FUNDS? If so, contact me.
Andy Bright :
Tel: 07508 857146
Email: andy@actionpf.org