2023 thru a lens

I’ve chosen 10 photos to sum up 2023 – living, working, playing, battling & ultimately finding joy despite my health challenges with cystic fibrosis (CF)* & diabetes. This is my year thru a lens…

February, as I posted about in ‘Never give up‘, I was voted plater of the match for my field hockey team in a 4-4 draw against our rivals Wimbledon. This still means the world to me as Felix was also playing, and proves it’s crucial to hold on when things are tough as better days are often only around the corner.

March. On the 17th, I celebrated 52 years with my twin bro Jez! Each birthday feels an achievement when you have kept defying the odds with your expected death by 17. I’m officially 35 years beyond my ‘sell by’ date!

March at home / November at Lake Konstanz – at work as a full-time employee comms consultant at Hitachi Energy. I’ve worked very hard this year, enabled by the wonder CF drug Kaftrio. It gives me purpose & serves as a helpful distraction when times are tough.

May – playing a game in Reading for my beloved hockey touring team, The Phantoms! As close to a Band of Brothers (inc. my elder brother Chris) as I have ever had in my life.

June – having a wonderful time at my ‘happy place’ – Lord’s cricket ground with great uni friend Ben for England vs Ireland. Actually remember the whole day of play, so I can’t have been drinking enough!

July – one to remember as Katie & I celebrated 20 years of marriage! Through richer & poorer, bad health to better health. She deserves a medal!

August – Wonderful family holiday in Kos, one of the Greek Islands. With most freedoms back, post Covid, this truly was a joyful time together…

September – my 3rd year anniversary on CF drug Kaftrio! Despite some ongoing side effects, I may not still be here without this ground-breaking drug. Every day is a blessing.

September – Felix & I at the IWM Duxford for the Battle of Britain memorial weekend. What a blast we had, until the rain stopped play. I will remember this as I did going there with my own lovely Dad.

October – sharing my survival story with ReCode Therapeutics in San Francisco. Hopefully giving them even more inspiration to keep battling to successfully bring gene therapy to the CF community, especially the 10% who cannot benefit from Kaftrio!

I will keep you posted on my life-affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right-hand side tab) if you have not already done so.

Yours cup half full.

Tim

Tim Wotton (author of Award-Winning CF Memoir ‘How have I cheated death?’)

* Cystic Fibrosis is one of the UK’s most common life-threatening inherited diseases, affecting over 10,500 people, and 70,000 globally. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations. For more information and to find out more view the CF Trust Website.

The Most Important Task

What’s the most important task you achieve every day? Mine quite literally saves my life. Find out more…

There’s a saying that if you can achieve the ‘most important task’ by early morning, than the rest of your day will flow with less issues.

My most important task is definitely taking my new cystic Fibrosis (CF)* medication Kaftrio, which I tend to take around 9am every day with my breakfast. It’s best to take these tablets with extra fat to aid their absorption and enable the benefits to my lungs.

My second chance 3^rd year anniversary

I’ve now been taking Kaftrio for over three years which is staggering for me get my head around.

Taking Kaftrio on the 3rd year anniversary in September

Despite enduring some physical side-effects from the drug, here are some of the most obvious benefits:

To cough or not to cough – for around three years, I barely cough and don’t suffer with coughing fits like I did every day before taking Kaftrio.

Run Timmy Run – I now have enough lung function to go to the gym and be consistent with my running on the treadmill. I am still playing field hockey and quite often in the same team as my 16 year old boy Felix, which is the greatest gift I could have wished for.

Business as usual – I have a lot more energy and can sustain long hours at work (when required) which was not really possible before the drug.

No sick note needed – I have not needed any of my dreaded intravenous (IV) meds since January 2020, which is by far the longest I have gone without having IV’s since I was pre-teens. That in itself is mind-blowing and allows me to simply plan for the future with my wife Katie as well as our family and friends. It’s got to be said that I feel ‘almost’ normal.

All set fair – when the weather is sunnier (actually not been that much sun in England this non-Summer), I don’t burn as badly as I previously did, as the pigment of my skin is not affected by the array of antibiotics I used to need to stave off infections.

There’s always a ‘but’ – this comes against a backdrop of around two hours of daily meds for my CF and diabetes, so I’m not completely free, but this new normal life makes all these meds feel worth it.

And this is all kick-started by the most important task of taking those two magical yellow tablets each morning. That’s certainly one task I won’t be missing…

The Most Important Task!

I will keep you posted on my life-affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right-hand side tab) if you have not already done so.

Yours cup half full.

Tim

Tim Wotton (author of Award-Winning CF Memoir ‘How have I cheated death?’)

I dedicate this post to my Aunty Mary, who passed away yesterday and was always caring and supportive of my health.

Worth a listen – I was a recent guest on Ashley Usiskin’s ‘The Gift of Help’ podcast, which explores the power of reaching out for help when in need. The words ‘Your Help Please’ can be the difference between life and death…

* Cystic Fibrosis is one of the UK’s most common life-threatening inherited diseases, affecting over 10,500 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations. For more information and to find out more view the CF Trust Website.

Never give up!

Something happened last weekend that defied belief & proved to me that it’s important to never give up…

I have previously shared on this blog that due to the health improvements I’ve gained from taking the new cystic fibrosis (CF)* drug Kaftrio, I’m back playing field hockey for Merton Hockey Club in London. Not only that, but I’m lucky to be able to play in the same team as my 15 year old son, Felix.

He plays up front & I play in defence as I don’t really have enough lung function for longer bursts of running in midfield. As a defender, I can utilise some of my latent ability which thankfully Kaftrio has restored for me.

This is my second winter season back playing & I have been able to steadily build up my fitness & durability. Only three years ago, at the start of the pandemic, the decline of my health was so pronounced, that I was struggling to walk up a flight of stairs without having a coughing fit!

I had pretty much stopped playing hockey in the winter months for the five years leading up to the pandemic, as it was just too punishing for my lungs.

One to remember!

That’s why what happened last Saturday makes me feel super proud as well as grateful for this second chance of improved health.

We played against a very strong local Wimbledon development team & managed to secure a hard-fought 4-4 draw. I knew in the lead up to the match, that it was going to be a testing game for our defence, & so it proved.

I was determined to give everything to help the team be competitive & fight hard against a quality opposition. I have to admit that there were times when I literally had nothing left in my body & was doubled up trying desperately to catch my breath before Wimbledon launched another attack at our goal.

As with any team sport, the sum of the parts is greater than the individual & the whole of our team worked hard to achieve the draw. In fact, we were only a few minutes away from winning before they equalised!

The five pairs of dad’s & son’s in our Merton team. Felix & I are 2nd from the right as you look at it!

The end game

At the end of the match, I was fatigued but elated that I had played the whole game & given a good account of myself. It seems that most of our team felt the same way about my performance & I was voted ‘Player of the Game’!

Especially important, Felix & my watching wife Katie concurred that I deserved this award and that meant the most to me. They have both endured my desperate times for many years before this moment & have seen me cough & wretch so hard that I’ve been sick. They were also put under severe stress when I had to shield away from them for over five months back in 2020.

This accolade was for Katie & Felix as much as it was for me!

Believe me when I say that it’s hard to put into words what being able to play competitive sport means to me. Not just in the moment, but to my self-esteem, mindset & long-term hopes for my future.

Before & after

To give this award some context, the table below dramatically shows the marked differences in my approach to playing hockey & exercise when I was at my lowest point in 2020 (having likely caught an early version of Covid) versus how I feel in 2023…

February 2020	February 2023 (2+ years on Kaftrio)
The cold winter months were always my worst time with reduced lung function & frequent Intravenous (IV) medications.	I have been able to gradually build up my fitness & lung function despite winter conditions.
Any type of running outdoors in February felt impossible.	I can do interval running outside but it’s hard.
I couldn’t run for long on the treadmill in the gym.	I have been extending the duration of how long I can run on the treadmill.
I would regularly break out in severe coughing fits when doing any form of running!	I hardly ever cough on a run or afterwards!
Mentally I was stressed & anxious before a hockey game in the decade leading to 2020.	I don’t worry before playing a game & look forward to pushing myself & being competitive in the match.
I was embarrassed at being on the same pitch as my son Felix & not doing my talent justice.	I feel truly blessed with the gift of playing on the same pitch as my boy!
I had stopped playing competitive league hockey in the winter months from 2015 as it was just too hard on my lungs. I only played in the summer months.	I can now play all the year round. My lungs & energy levels enable me to be competitive in the winter & summer leagues!
When I did play hockey, I could barely play half of the game as it was just too hard.	I can regularly play the whole game & keep my fitness up throughout, although I can’t run for long bursts!
The last accolade I would ever imagine being awarded was ‘Player of the Game’.	It’s possible to play well enough to get ‘Player of the Game’ awards from my team!
My self-esteem & self-worth about my hockey talent had gone!	I feel utterly proud that I can play, compete & be part of a team again!

I don’t honestly know if the effectiveness of the drug Kaftrio will last. It is such a new drug that everyone benefiting from it is keeping their fingers crossed. There are also thousands around the world who can’t have Kaftrio who are even more in need of new drug & treatment breakthroughs.

Last Saturday’s ‘Player of the Game’ award could be a one-off. To be honest, if that’s the case, I am at peace with that. The fact that I have come back from the brink to be playing competitive sport means I’m winning whatever the result.

When I was seriously ill for so long & battling through some very desperate times, I always held onto one crucial thought… ‘Never give up!’ For now, it seems that has made all the difference.

I will keep you posted on my life-affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right-hand side tab) if you have not already done so.

Yours cup half full.

Tim

Tim Wotton (author of Award-Winning CF Memoir ‘How have I cheated death?’)

* Cystic Fibrosis is one of the UK’s most common life-threatening inherited diseases, affecting over 10,500 people, and 70,000 globally. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations. For more information and to find out more view the CF Trust Website.

A New Hope

My first ever Postcards from Earth vlog explaining what the new CF wonder drug Kaftrio has meant to the quality of my life, and my hopes for those who are not able to benefit from it…

Filmed Autumn 2022 on the 2 year anniversary of starting Kaftrio

I’ll keep you posted on all the trials and tribulations this coming year as I make the most of the most precious gift of improved health and well-being.

Yours cup half full,

Tim

All I ever wanted

I reflect on another year defying the odds with cystic fibrosis (CF)* and the one gift I wanted more than anything, that until recently, proved the most elusive…

My ask of Santa

I’m extremely low maintenance as far as the receipt of festive gifts. For 49 years, the ultimate present would be to reduce my suffering in the form of a new medication. There are not many people who have ‘new medication’ at the top of their list from Santa?!

I appreciate all presents, but all I ever wanted was the precious gift of improved health. To be honest, if a wonderful new drug was gift-wrapped and left under the Christmas tree, you would have seen more joy from me than receiving any other type of gift!

More than anything in this word – the precious gift of medication!

It has now been over two years since I started the CF modulator drug Kaftrio, and it continues to make a big difference to the quality of my life and it has dramatically reduced my suffering and risk of death.

I have more energy, vitality and have been able to incrementally increase my lung function and fitness by playing competitive field hockey and regular trips to the gym. These are only 1% improvements but compared to how I was feeling pre Kaftrio, it seems amazing that I can actually feel better as opposed to regress.

I am living proof that your greatest wealth is your health. Being able to draw a deep breath without pain and to laugh without causing a coughing fit feels the most momentous present for me.

The gift that keeps on giving

The drug has helped me but only to a point. It stops the mucus production in my cells. It doesn’t alleviate the 49 years of lung damage. Playing sport and running are still damn hard but it’s night and day to how it has was before.

One sideways gift has been able to play league hockey in the same team as my 15 year old son Felix. We play most Saturdays in a competitive London league, which is such a wonderful activity for me (and hopefully him!). He plays in midfield and as my healthy clone, he’s able to run hard and has been winning a few player of the match awards, which makes Katie and I so proud.

Felix & I playing together for a dad’s & son’s London hockey league

I play in defence and can make more of an impact on the game with the positive effects of Kaftrio. I struggle to put into words how blessed I feel that I don’t cough any more when running and playing sport!

Still, there’s always room for humour. On a particularly cold day, we were discussing about the need to wear an ‘under armour’ type layer underneath our club hockey top. Felix told me that he wouldn’t need the extra layer as he gets so hot with all the running he does. He then added, “You don’t really run in your position, so you need the extra layer!”

I had to remind him that the new drug is good but not that good…

My new normal

One important realisation is that despite Kaftrio making a substantial improvement to my health, I still need to endure two hours of meds and therapies each day for my CF and diabetes. There is no remission period where I can feel normal enough that I can simply stop my medical regime.

In fact, half of my drug intake is in place to counter all the side-effects of heavy doses of previous drugs (like steroids) that kept me alive when I wasn’t expected to live that long. Also, I am now dealing with the associated issues of getting older with CF. I am now officially called a ‘geriatric CF patient’ by my doctor! I’m not sure if this is a compliment or not?!

Should auld acquaintance be forgot?

At this time of year, I poignantly remember those CF angels who are no longer with us, who all deserved to live long enough to feel the benefits of Kaftrio. They fought so very hard and will always be in my heart.

I’m also mindful of the 10% of the CF population who are unable to take Kaftrio, due to their CF genes. I know there’s a lot of great research and trials relating to gene therapy which I hope will cause a positive improvement in their lives in the near future. My thoughts will be with them until that fine day.

This Christmas, asking for the best possible health for 2023 will still be on my list from Santa!

I wish everyone season’s greetings and a healthy and happy new year!

I will keep you posted on my life-affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right-hand side tab) if you have not already done so.

Yours cup half full.

Tim

Tim Wotton (author of Award-Winning CF Memoir ‘How have I cheated death?’)

Worth a view – I recently shared my survival story with nebicorum, promoting the importance of PARI nebuliser equipment.  

* Cystic Fibrosis is one of the UK’s most common life-threatening inherited diseases, affecting over 10,500 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations. For more information and to find out more view the CF Trust Website.

(In)visible in the workplace

I recently had an article titled ‘Winning at the workplace with cystic fibrosis’ (CF)* published on pharmaceutical TEVA’s website. In the article I posed this pertinent question…

Why have I pretty much hidden away my condition, my big survival achievement and my most meaningful attributes in the workplace in order to get on?

People with CF are some of the most resilient I know and that counts for a lot in the outside world, especially at work, where we don’t sweat the small stuff, are determined to deliver and want to make each day count.  

CF has forced me to live each day with focus and determination. I know how to set deadlines, appreciate the present moment and use my finely tuned coping strategies to get the job done.  

Despite these challenges, I have successfully delivered corporate communications and change initiatives across huge companies like bp and Shell. 

BUT, I’ve had to hide ‘the real me’ my whole career. Unfortunately, all these wonderful attributes have helped me but meant very little to any employer. 

Why? I felt I had to keep it hidden away in order to stay employed, especially as a business consultant where delivery is everything and I didn’t want to show any possible weakness. 

CF is an ‘invisible or hidden disability’. I generally look well from the outside, but the majority of my suffering and trauma lies unseen within my body. 

I have had to put a mask on. I never properly revealed my condition and sadly, I was never offered a job when I raised it during interviews. I’ve also encountered ignorance, bigotry, meanness, bias and ridicule at times when I have raised my condition. 

I have to say that a I have had lots of strong support and compassion from line managers once they understood my health needs, but it can be hit and miss.

This excerpt from my survival book ‘How have I cheated death?’ details how I have had to manage this ‘Business Unusual’ career over the last 25 years. 

It was a huge achievement to not only have time and focus to write my memoir ‘How have I cheated death?’ whilst having CF, a full-time career and a family – but to also get it published. Sadly, I felt I had to hide this massive achievement as it could negatively impact my career. 

This is a photo of me winning a book award in London. I was so proud that night in 2015. It breaks my heart to admit that the next day at work, I didn’t even mention it for the potential negative ramifications of having a life-limiting disease.

Winning the Best Achievement award at the UK People’s Book Prize

Fortunately, a sea change is coming and work culture is changing. Thankfully people are becoming more open to ‘hidden disabilities’ and good business now values diversity, inclusion and belonging. This has been magnified by the pandemic.

I believe now is the right time to remove the mask and be more visible and transparent about my health situation and super-strengths. 

It has been a hellish struggle throughout, but, thank goodness, times seem to be changing and there is now more understanding and kindness in the workplace.  

I’m hopeful that in the future, people with invisible disabilities, can be more transparent, be valued for bringing their full self to work, so that they have careers that are more ‘Business As Usual’. 

Read the full article here Winning at the workplace with cystic fibrosis

I will keep you posted on my life-affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right-hand side tab) if you have not already done so.

Yours cup half full.

Tim

Tim Wotton (author of Award-Winning CF Memoir ‘How have I cheated death?’)

* Cystic Fibrosis is one of the UK’s most common life-threatening inherited diseases, affecting over 10,500 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations. For more information and to find out more view the CF Trust Website.

Elevating hope

It’s powerful when you meet people who could transform your health and thousands like me with the chronic condition cystic fibrosis (CF)*…

I recently presented about my survival story and health challenges to US-based ReCode Therapeutics. They are a genetic medicines company in Northern California, that is developing a new type of therapy for rare lung diseases like CF.

ReCode’s technology enables precise delivery of large molecules such as mRNA so that the needed CFTR protein can be made in the right cells in the lungs. Recode’s first program for CF is expected to deliver this genetic medicine directly into the lungs using a nebulizer.

As well as talking about my ‘holy trinity’ survival strategy (Medical commitment / Regular Exercise / Positive mindset), I also referenced how unwell I was prior to taking the modulator drug Kaftrio and the benefits I’ve enjoyed over the last 22 months.

ReCode were fascinated by the health improvement I have undergone as they know that their medical solutions can mirror that for people with CF.

Purpose leads to change

I was also able to ignite their purpose as they saw the ‘human’ who will benefit from their future medicines. After all, no change happens without emotion.

It’s important for any therapeutics or pharma to appreciate the wide eco-system behind each person with CF (or any chronic condition). Helping the health of the sufferer has a profound impact on their family and friends, which can equate to hundreds of people.

Hands Cutting Paper With Impossible Text

The (not so) new hope

ReCode have the amazing opportunity to improve the health of thousands of people with CF around the world, including the 10% of sufferers who don’t have the right CF mutations to benefit from Kaftrio.

They can also help those who cannot access Kaftrio yet or who have stopped taking it due to serious side effects. Lastly, for people like me, it may help to improve the lung damage which Kaftrio doesn’t touch.

However, gene therapy treatments have been mooted for over 30 years, ever since the CF gene was discovered in 1989. See the excerpt from my book ‘How have I cheated death?’ from 10 years ago and all the false dawns we have witnessed with such ‘hopeful’ treatments.

The big picture

I still suffer every day despite being on Kaftrio. I have at least two hours of medication throughout the day and my body is compromised by a plethora of side effects from the smorgasbord of my daily meds.

As much as we are grateful for the tangible health improvements from the modulator drugs like Kaftrio, there is still more that must be done so that CF stands for ‘Cure Found’.

Hope is only a four letter word but what it offers for the future of the CF community is beyond words I can simply convey. It’s important to reiterate that this hope is carried over to the family and friends of the person with CF.

During this presentation and follow-up Q&A with ReCode, I looked to boost their purpose and determination as they strive to elevate this hope with their future medicines.

They have what it takes to make this happen. Thousands of patients and even more people (in their eco system) are counting on it! I wish ReCode all the best of luck with their health solutions.

I leave you with an expression I find truer by the day:

‘What some people take for granted, others are praying for.’

I will keep you posted on my life-affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right-hand side tab) if you have not already done so.

Yours cup half full.

Tim

Tim Wotton (author of Award-Winning CF Memoir ‘How have I cheated death?’)

Worth a read – I recently read the CF book ‘Unconditional Love’, written by Laura Barrett about her lessons learned with her new born CF child and spending many months in the hospital. I encourage any parents of new born CF children to read this helpful book!

* Cystic Fibrosis is one of the UK’s most common life-threatening inherited diseases, affecting over 10,500 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations. For more information and to find out more view the CF Trust Website.

What if?

Catching Covid as someone who is clinically vulnerable with cystic fibrosis (CF)* was always a huge worry. Well, now it’s happened…

My family and especially my wife (who is a senior nurse) have worked very hard to avoid getting it up to now because of the obvious ramifications for my health. This was especially tricky when our son Felix had Covid during the 2021 Christmas period.

Sadly, I was aware of people with CF who have died after getting the virus, so the specter of catching it hangs over the CF community. Personally, I had many questions swirling around my head…

How much of the viral load will I get?

What if I end up in hospital?

What if I need to be on a ventilator?

What if I get long Covid as well as dealing with my CF and diabetes?

What if I cannot say goodbye to my family and friends?

Face the truth

In late February all the restrictions were lifted in the UK and it did feel a matter of when, rather than if, I caught Covid. This was especially real as I was returning to the office a few times each week, meeting people socially, going to the gym and playing sport.

On Sunday 27 February, I started to get some ‘cold-like’ symptoms and decided to take a lateral flow test at home, because the next day I was due in the office. And there it was… a red line for Covid! This was 100% verified as Covid by a PCR test the following morning.

Now you see it, Now you don’t!

I quarantined in our bedroom with Katie and Felix keeping away but even so, unfortunately Katie also caught it a few days later.

As I had had a fourth vaccination a week before catching it, thankfully my symptoms were mild – headache, tiredness and a stuffy nose! I also had a course of the new anti-viral medication for five days which helped to reduce the impact of Covid. It went to my chest for a few days but nothing as bad as I had feared with all those ‘What ifs’.

I also have the extra ingredient of being on the CF wonder drug Kaftrio, which I’m sure played its part in keeping me healthy while having the virus in my body.

Finally on Day 9, I got a negative lateral flow test after a few days of faint lines when testing. The relief was palpable.

A few days after that I was able to return to normal activities like going to the office, gym, playing hockey in the same team as Felix and socializing.

(Viral) load off my mind

It was reassuring that after two years of ‘What ifs’ I was able to get through catching Covid with minimal disruptions and little impact to my lungs and long term-health.

I’m fully aware that so many have lost their loved ones during this pandemic. I know I’m lucky to have got through it and I’m glad I was protected by the vaccinations.

It’s also given my family some extra protection for a few months which will help set up the summer and hopefully easier times…

I will keep you posted on my life-affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right-hand side tab) if you have not already done so.

Yours cup half full.

Tim

Tim Wotton (author of Award-Winning CF Memoir ‘How have I cheated death?’)

* Cystic Fibrosis is one of the UK’s most common life-threatening inherited diseases, affecting over 10,500 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations. For more information and to find out more view the CF Trust Website.

Gone but not forgotten

Occasionally something will come from leftfield, stop you in your tracks and cause deep emotion and reflection. I had one such moment recently which I want to share with you…

I was in St. James Park, London, relaxing in the autumnal sunshine during a break from work, when I noticed on a Facebook forum a trailer for a film documentary about the amazing Mallory Smith, who lived life to the fullest while battling cystic fibrosis (CF)*.

Before she died, aged only 25, Mallory gave her mum the password to her video journals chronicling how she felt during her life-long struggle with the condition. A film has been produced from these journals, called ‘Salt in my Soul’.

I sat there watching and re-watching this short trailer with tears running down my face, seemingly frozen in time, with flashbacks of how I felt on many occasions battling the same illness for 50 years.

It brought back some dormant feelings that I had not properly felt for the last 15 months due to the positive impact of the ground-breaking drug Kaftrio.

Before starting Kaftrio in September 2020, I really was on a steep health decline with failing lung function and reduced energy. My quality of health was very poor.

I have little doubt that I would’ve started using oxygen and been added to the lung transplant list, with all the risks of finding a donor, organ rejection and death.

Back then, I was up for at least an hour every night coughing like a demon, using a towel across my mouth to suppress the barbaric noise, so as not to wake my wife Katie and son Felix.

The ‘end’ was on my mind more often than not; magnified by the huge dip in my health in early 2020 and the deaths of other CF friends around the world.

Thinking about how I would say goodbye to my family and loved ones was too tough to imagine so I fought it off with positive thinking, mindfulness, meditation practices and clinging onto hope for a new drug to ‘rescue me’ from the hell that was enveloping me.

In the sporting world, it’s common to say that it’s ‘the hope that kills you’ but in my worrying situation, it was ‘the hope that kept me alive’!

Since taking Kaftrio and having gone through the purge (of clearing the mucus from my lungs for a few months), I now hardly cough at all, which is amazing and surreal. Plus, I have more energy. I can play my beloved field hockey again and now play in a team at weekends with my son Felix!

My sleep is better (despite snoring, which is a side effect of Kaftrio) and I have no more need for that towel by my pillow at night to suppress the coughing fits. Indeed, my quality of life has improved beyond expectation.

The drug cannot fix all the years of lung damage but what its given me is worth its weight in gold.

Gone but not forgotten

The person I was before Kaftrio and the very real concerns of my impending demise are currently out of sight but they are most definitely not out of mind. Watching that film trailer reminded me of that in no uncertain terms.

My feet are staying firmly on the ground. I don’t take any of the recent days of better health for granted.

More than ever, I know that life is impermanent. My health could still revert back to how it was because we don’t know how long the positive effects of this new drug will last.

I want to honour the memories of my CF friends and angels like Mallory who sadly were unable to benefit from Kaftrio but deserved to, just as much as me.

I appreciate that every single day is a blessing – a gift with abundant possibilities. I’ll make sure to make the most of this new beginning, however long it lasts.

This post is dedicated to my CF friends who have passed away who are also gone but not forgotten.

Wishing you all a wonderful festive holiday and healthy 2022!

If you watch one thing today > ‘Salt in my Soul’ film trailer. The film will be available on streaming services from late January 2022.

I will keep you posted on my life-affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right-hand side tab) if you have not already done so.

Yours cup half full.

Tim

Tim Wotton (author of Award-Winning CF Memoir ‘How have I cheated death?’)

* Cystic Fibrosis is one of the UK’s most common life-threatening inherited diseases, affecting over 10,500 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations. For more information and to find out more view the CF Trust Website.

Free at last

It’s been a year since I started the cystic fibrosis (CF)* wonder drug Kaftrio and a lot has changed for the better…

Here’s my Top 10 list of positive changes:

1. I have more energy and have gained some weight.
2. I rarely cough at all now compared to previously coughing most of the day and night. I don’t suffer from the habitual choking episodes at night, where I felt close to never catching my breath!
3. I have not needed an Intravenous (IV) session to re-boot my lungs and remove chronic infection since February 2020 and it’s not even on my radar to even need such a treatment.
4. I have reduced some of my treatment and tablets burden
5. I have been able to maintain and incrementally improve my lung function and fitness via regular exercise.
6. I was still able to run twice a week during the winter when I was forced to run outside in the cold due to gyms being closed during the many lockdowns. I hadn’t been able to run outside in the winter months for well over 10 years.
7. I felt fit enough to be able to re-commence playing field hockey after a break of two years.
8. I was able to play whole games of hockey for the 1^st time in over a decade and felt like I could be competitive on the pitch, rather than just existing.
9. When I’m playing, I never need to cough up mucus, which was a real problem for the majority of my previous 40 years of playing.
10. As well as being double vaccinated, I feel more protection should I ever catch Coronavirus or any future infections.

Tim with Katie & Felix in the Isle of Wight, July 2021

For transparency, I’m far from cured and I still have some health challenges:

1. I still take over 30 pills a day and do around 90 minutes of different treatments (including diabetic care) per day.
2. Kaftrio does not reduce the 50 years of lung damage so I will need to wait for a different medical intervention for that one.
3. There has been a one significant side effect to navigate which has caused me different issues and I’m still looking to find solutions for it.
4. I also got injured (on purpose) by a hockey opponent back in June and had to have 4 stiches in a vertical wound in my right kneecap.
5. I am beginning to feel the effects of loss of hearing caused by a number of medications (which I have now stopped taking)

Tim having just played a full game of hockey for the 1st time in a decade, June 2021

Overall, I feel blessed with the better quality of my life, being able to take deeper breaths, exercise with more energy and the positive outlook for my life with my family and at work. I’m not free from CF but I feel free at last…

I will keep you posted on my life-affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right hand side tab) if you have not already done so.

Yours cup half full.

Tim

Tim Wotton (author of Award-Winning CF Memoir ‘How have I cheated death?’)

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,500 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations. For more information and to find out more view the CF Trust Website.