Dare to hope

Hope of a cure is crucial for anyone suffering with a life-threatening illness like cystic fibrosis (CF)*. My hopes have been raised and dashed in equal measure over the years. But is the outlook at last changing?

Having just turned 42, I’m keeping just above the median age of life expectancy for CF sufferers in the UK which is currently set at 41 (and 38 in the U.S.as I understand it). Based on existing UK records, each week five babies are born with CF, and two people die. More than half of the CF population will live past 41, and improved care and treatments mean that a baby born today is expected to live even longer.

The ‘c’ word of ‘cure’ is of paramount importance to all of us and our loved ones. A cure from all our ills. This word has been bandied about in many different ways by all sorts of people from scientists to the media for more than half my life.

It was way back in August 1989 that scientists from the U.S. and Canada triumphantly announced the discovery of the gene associated with CF. It was the early days of gene hunting, and the CF gene was a big prize. At the time, they predicted that a genetic test for CF was just around the corner. But they also thought a drug to treat the disease was in reach.

Patient patient
24 years and over 8500 days later a CF cure is still proving elusive. Throughout this extensive period of hope, I’ve experienced many false dawns and had to rationalise the sensationalism of many press reports. I’ve also have to manage the delight of my family and friends who tell me they’ve just heard that “a cure for CF has just been discovered!”

From 1997 I endured a fallow decade of no new drugs that could improve both my body and mind. Based on the premise that if you don’t ask, you don’t get in this life; I must have sounded like a broken record with my doctor during every appointment, “Anything new coming soon?”

Often my doctor would name a couple of drugs that I’d never heard of and tell me that we needed to ‘save them for a rainy day’. Well England has had its fair share of rain in this period, but still I had no joy. I did ask but I didn’t get.

Strangely, the years have taught me about patience. Patience is waiting. Patience is keeping going when the going is torturous and slow. Waiting hurts. But not knowing if a cure will ever come my way can sometimes be even more painful.

I know a few CFers who have withstood lung transplants and are doing pretty well but very sadly I know some that didn’t survive after receiving their new organs. I know and see others around the hospital, heavily dependent on oxygen, who are desperately holding out for the right donated organs. I can only imagine that that must require the most amazing amount of patience.

Wait for me
There are now a handful of successful drugs making their way onto the market. Like buses, you have to wait an age for one to turn up and then suddenly a couple turn up all at once.

A new generation of transformational drugs are coming. I have luckily lived long enough to see a time where drugs for the first time are available that treat the root cause of CF.

‘TOBI Podhaler’ by Novartis, consisting of a dry powder formulation of Tobramycin for oral inhalation via a handy device is one such medication. I’ve been on this for a few months and it’s improved my lung function by over 5 per cent.

Also there are two further dry powder inhalations – ‘Colobreathe’ from Forest Laboratories and ‘Bronchitol’ (mannitol) by Pharmaxis. Lastly there is an oral medication called ‘Kalydeco’ from Vertex Pharmaceuticals.

The drug that is receiving a lot of press is Kalydeco. It took Vertex a while to find a drug that would help restore the function of the protein the CF gene makes. One of those chemicals ultimately became a successful drug, but it had to be modified so patients could take it by mouth, and so it would last the right length of time in a patient’s body. Overall the success of Kalydeco has been more than two decades in the making.

Kalydeco only treats patients with CF who have at least one copy of the G551D mutation. There are around four per cent in England – about 350 patients – who are benefiting from this medicine. While not quite a cure, the drug is extremely effective for those patients who have that mutation.

It has opened up a new era of genotype specific medicines that are the closest thing to a cure yet for cystic fibrosis. It comes in the form of two blue tablets, which control the symptoms in the lungs and for some of the digestive system too. After 42 years battling with CF, taking 40 tablets a day and many other treatments, I can’t imagine having only two little pills to take a day.

I don’t have the G551D mutation. I have the most common type of CF mutation, F508Del, which 90 per cent of people with CF carry, but Kalydeco could still help me in the long run. There are further trials using Kalydeco in combination with a substance called VX-809. The first results from these trials have shown a potentially positive impact on the more common F508del mutation.

However, this is not an actual cure as the damaged CF gene still exists. The only way to fix that would be gene therapy, where a healthy form of the gene would supplant the damaged one. Although it seems simple in theory, in practice, gene therapy has been incredibly difficult to accomplish and clinical trials in the UK and US are ongoing. When perfected hopefully inside the next decade (but I don’t want to get my hopes up), the effect will be close to a cure for CF children and it will be very helpful for older adults depending on their state of health.

There is and always has been a lot of fanfare about curing CF, but this new generation of drugs offer an alternative ‘c word’ and that is ‘control’ – controlling CF at the basic level, and that offers hope while we wait for gene therapy. We are at last beginning to win a few battles while we hold out to win the whole war… but there’s still more waiting and patience required.

More can and needs to be done by pharmaceuticals to maintain the momentum on treating CF. Scientists need to have an ‘ABC mindset’ to CF – Always Be Curing!

Once a drug is available it would help to keep it at a realistic funding price so that it’s actually benefiting those that need it. There’s nothing worse for a person with a chronic health condition then knowing of the existence of a game-changing drug, only for funding red tape to delay or eliminate it ever being taken. People talk about dangling a carrot, but this is more like suspending a bar of gold above someone’s head and then taking it away.

There’s a golden opportunity for drug companies and R&D staff to leave a lasting legacy by making a tangible difference to the quality of life and longevity of CF sufferers, so that in my lifetime the average age for a CF life is doubled.

It would also have a massive impact on my life, hopefully prolonging it so that I can enjoy a better quality of life with my wife Katie and son Felix.

I’m told that time is a great healer. Up to now that hasn’t been the case. I’m hoping that I can dare to hope for a brighter future and that time will still be on my side…

The UK CF Trust is at the heart of CF research and is holding a Research Strategy Conference on 29 April in London. Check out the CF Trust Website for more information on their strategy.

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

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 8,500 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.

Catching the bug

People with the life-threatening illness cystic fibrosis (CF)* are used to catching infections but the bug I’ve recently caught is proving to be more of a help than a hindrance…

I’ve not been particularly happy with the state of my health and reduced lung function over the last few years, so last autumn after another intravenous (IV) treatment, I decided to draw a line in the sand and look at fresh ways to finesse my health regime.

‘If you do what you’ve always done, you’ll always get what you’ve always got. If what you are doing is not working, do something else.’ Joseph O’ Connor

Based on this adage, I made the commitment to alter some parts of my life. Rather than being on the defensive about not being able to exercise as much as I previously could, I was keen to go on the offensive and give something new a go. And that was to join a gym.

As I’ve mentioned before on this blog, I was reticent to get involved with gyms. This was partly due to the feeling that I would be in ‘competition’ with healthier people therein, but predominantly because if I needed to cough hard or clear my lungs, I believed a gym wouldn’t be terribly conducive or discreet.

Going to a gym after 41 years would be my ‘Dr Pepper’ moment – ‘What’s the worst that could happen?’ After all, if I didn’t try it after all these years of persuading myself that it wasn’t right for me, I would never know.

The catalyst for this change was thanks to an intervention by a physiotherapist at Great Ormond Street Hospital and a kind offer of membership by Nuffield Health in Cheam, which I started attending last October. For cross-infection reasons, prior to starting at the gym they conducted a check whether they had any other CF adults as members, which they didn’t. To assist with my CF needs and concerns, the centre manager and one of the personal trainers (who would be initiating me) were briefed about my health situation.

I must admit that going there for the induction and first work-out was a pretty daunting experience. Would the personal trainer understand? Would it be obvious to the other members that I was different? How long would I last on the treadmill before having a coughing fit? Would I feel like an imposter?

Working out (how much exercise is enough)

I have been frequenting this gym two to three times a week for the last four months, including weekends and evenings following a busy day at work. My routine consists of interval training – running bursts and speed walking – on the treadmill for anything from 30 to 60 minutes to get my lungs to work hard. A real bonus of this has been the chance to watch TV as I get fit!

At this point it’s important to visit the toilet to clear my lungs as it churns the phlegm up. The session is concluded by a short turn on an exercise bike and 20 minutes of weights which helps to stave off the harsh side-effects of 20 years of steroids and my osteoporosis.

As I’m extremely prone to diabetic hypos from exercise, I bring my glucose energy tablets and flapjack bars with me. There have been quite a few occasions, when I step off the treadmill that I have needed to sit down for a while with my energy bar while my body re-aligns its blood sugar levels. One time, when at a very low ebb and nearly keeling over, I was kindly given some free chocolate by one of the personal trainers.

I was concerned about my need to cough in front of others while exercising but this fear was set aside on day one. These gyms are pretty noisy environments with boisterous SPIN, Box-fit and high-intensity training classes taking place all around. As well as that, most members are wired into their mp3 players or listening to the TV console as they work out. I cough with no feeling of guilt.

It’s gym life, but not as you know it

In my short time there, a lot of my pre-conceived clichés about gyms have been disproved. There’s a mix of shapes and sizes, not everyone’s a picture of health and not many men are wearing too much pink lycra.

The gym isn’t full of superhuman physical specimens running around like Olympians. To my pleasant surprise, I discovered that the clientele is an assorted mix of athletic prowess. Not everyone is running flat out on the treadmill as if their life depended on catching the number 93 bus from Wimbledon to Putney.

A fair few gym incumbents use the treadmill to lightly train by only speed walking. This made me realise that a gym allows you to exercise at whatever level suits the individual and therefore such an environment could be appropriate for anyone whether they’re healthy or not, disabled or able-bodied.

Working out

Fitness makes perfect

I’ve definitely changed my mind on the value of a gym membership. You could say I’ve exercised away my demons. After 41 years of struggling with running outdoors, even in cold weather, my eyes have been opened that there are other ways of maximising my health. I have to say that it’s been a revelation for me.

Historically, during harsh winter weather of snow and extreme cold, I would not have been able to get any form of exercise for weeks at a time. However, the gym is winter proof. I can exercise even when it’s raining which I’d be loath to do if I was running outside in the wet. Apart from occasional games of league hockey for London Edwardians, I’ve not needed to run outside for a few months. With spring and warmer weather around the corner, that hopefully bodes well, though CF can catch you out when you least expect it, so I need to stay resolute and on my guard.

I’m definitely benefiting from the exercise and I’ve seen improvements in my running duration on the treadmill and in my ability to lift bigger weights. It’s an obvious statement but the more I exercise, the healthier I seem to get. It reinforces the paramount importance of exercise, however much or little is possible, for CF sufferers. Sport, mainly my hockey, has been absolutely vital in my longevity and defying the harsh CF odds.

Despite a long cold winter in the UK and succumbing to a few colds around Christmas, I’ve not needed my habitual mid-winter February IV treatment and time off work. Also the extra exercise has boosted my diabetic blood sugar level which has in turn helped to reduce the build up of infection in my lungs.

I noticed recently on my blog search report that someone had entered an internet search entitled ‘Tim Wotton obituary’. I was initially taken aback that anyone was hunting for my death eulogy. Perhaps they were concerned that my recent lack of blog posts had a sinister connotation and that I was no longer around and I was writing postcards from heaven instead.

The truth is that I am very much alive and kicking. I’ve caught the gym exercise bug and it’s one I want to hold onto. To achieve something you’ve never had before, you must do something you’ve never done before. How true…

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

I have been amazed by the zany ways family and friends have fundraised for CF over the years. My work director, Enda Logan, steals the prize as he’s doing a tandem jump out of a plane in Texas on 17 April. If you feel inclined, do sponsor this fine fellow and give him wings!

www.justgiving.com/Enda-Logan

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 8,500 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.

Goodbye to all that

A candle was blown out at Christmas, when the life of a fellow cystic fibrosis (CF)* adult was cut horribly short. For me, this has always been the hardest part…

He left a lasting impression on anyone that had the pleasure of knowing him and for those that were aware of him. Together his family and friends shared his journey, his infectious personality and unquenchable spirit; celebrating his highs and witnessing his lows.

I’m sure that he would have experienced and appreciated more in his forty years on this earth than most could achieve in a lifetime. He would have lived life to the full, making sure every second counted because he knew that life was likely to be short.

Through his hockey playing, education, work career, family, marriage and precious fatherhood he kept defying the odds and proving all the medical predictions wrong.

I doubt he would seek any pity about his illness or complain much about the grim daily medication but he would have wanted people to understand and appreciate his remorseless plight. When there was nothing to be happy about and everyone was in despair, his smile would light up the room, put people at ease and warm the hearts of anyone he met.

After clinging onto life for so long, he wouldn’t have wanted to depart when there was still so much to enjoy, do and achieve. For him he knew there would be no more changes of season, rain, sun, sport, films, tears, laughter, smiles, frowns, sunrises, sunsets, dawn, dusk, television, radio, alcohol, holidays, playtime with his children, hugs with his wife and family.

But he would probably have had enough of the relentless struggle with a terminator of an illness that doesn’t take many prisoners. His ravaged body which had fought so courageously for all those years would have likely cried out “NO MORE!”

No more pill taking, nebulisers, inhalers, physiotherapy, injections, pain, weariness, intravenous medication, lung function tests, coughing fits, wheezing, hospital appointments, operations and in-patient wards. NO MORE obdurate suffering.

I expect after fighting against CF for over 14,000 days he would have wanted some longed for peace and tranquillity, to breathe easy for the first time and be set free.

I’ve always been quite wary to mention the death of CFers in this blog, but we can and should take amazing solace and pride in the fact that he outlived all expectations, defied so many odds and made a positive impression on so many lives. His life did make a real difference and he does leave a lasting legacy which is critical when your time is up.

His fundraising efforts raised a considerable amount of money to offer a healthier future for the next generation of CF sufferers and their families, so that one day CF will stand for ‘Cure Found’.

His spirit will live on and shine brightly – a beacon of light and hope for all of a tough life well lived. We shouldn’t cry because it’s over, rather we should smile because it happened…

This blog is dedicated to the extraordinary life of Paul Harvey whom I never met, but knew virtually through a mutual hockey friend. I’m glad I was able to connect with Paul online. We were so similar in our stature, handsome looks, demeanour, hockey playing, drinking prowess, enhanced joy of life, family and health experiences that it’s almost like we were the same soul but in different bodies. My sincerest condolences go out to his wife, Sarah, and his beloved family. You will be missed Paul.

If you want to donate to Paul’s Just Giving CF website, click here.

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

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 8,500 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.

Introspective

The recent death of my father has given me fresh perspective on how I can and will keep battling the life-threatening illness, cystic fibrosis (CF).*

People have kindly told me that my struggle with CF has given them perspective on their own lives, how to contextualise tough times and what to be grateful for. But where do I draw my own perspective and health context from?

Apart from the obvious motivation of staying alive to be a husband to Katie and a father to Felix, seeing others out and about whom are physically and/or mentally in worse shape than me gives me all the incentive I require to knuckle down with my own fight against the odds.

I witnessed first-hand the plight of my dad who suffered stoically for nearly two years with one of the motor neurone diseases (MND) until his death last week, aged 81. MND are a group of neurological disorders that selectively affect motor neurons, the cells that control voluntary muscle activity including speaking, walking, breathing, swallowing and general movement of the body. They are generally progressive in nature, and cause progressive disability and death. MND is not that well understood by the general public and there is no cure. Here there is a striking similarity with CF.

Depending on which version of MND one has, there is very little that seems to prevent the advance of the deterioration to the sufferer. It felt like my dad was in a ‘plunging underworld of sinking’ to quote from Siegfried Sassoon’s WW1 poem Stretcher Case.

They say that it takes one to know one and on the subject of suffering, I feel that I was able to look into my dad’s eyes and better appreciate his true predicament and inner demons. Being permanently ill has allowed me to more easily empathize with others going through similar ordeals.

My dad’s unfathomable condition has had an indelible effect on me and my creative ability to seek perspective and find any good from a truly awful situation. I am immediately thankful for the enormous part he played in keeping me alive through launching my hockey career and raising, with mum, hundreds of thousands of pounds via CF fundraising activities.

The shocking finality of losing my dad has very much knocked the wind out of my sails, but conversely his death has made me feel more alive than ever. It helps me to keep shaking off the mortal coil that he unfortunately could not.

It has liberated me that I am still here, seeing each new day and unlike my poor dad, I do have the opportunities to fight back against my illness. I can keep reinforcing the ramparts of my castle against the invading foe that is my CF and diabetes. Both physically and mentally I can help myself to counter CF and live a full and fun existence.

After my September intravenous treatment, I recently began using a new antibiotic inhaler which is helping my lung function, especially important with winter looming. I am being even more fastidious with measuring my blood sugar levels and taking insulin with every meal so that I can keep my diabetes in check. Also, thanks to Great Ormond Street Hospital and Nuffield Health, I now attend a local gym and am definitely benefiting from the exercise machines and weights (while watching Sky Sports TV!).

Dissimilar to my dad, I have had my ‘hard truth’ all my life since my mum diagnosed me at six months old and as horrible as my medical regime is every day for 41 years, I don’t know anything different. I’d clearly rather not have CF but I honestly believe that it is easier to adapt to a condition from birth rather than later on in life after a period of healthy living.

When I next take to the hockey pitch, my dad’s spirit and sporting vibrancy will be with me every step of the way. I will live and breathe on in his memory, galvanized beyond all belief, that as grim as my illness is, I can still control my own destiny.

It’s what he would have wanted…

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 if you have not already done so.

Yours cup half full.

Tim

Tim Wotton

To find out more about MND, visit: http://www.mndassociation.org/

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 8,500 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.

Cross to bear

Hide and not seek. This is the latest challenge for people with the life-threatening illness Cystic Fibrosis (CF)*…

Under current medical guidelines CF patients have been advised to no longer spend time with each other. It’s all down to the risk of making each other more ill from cross-infection.

From my experience it’s hard for CF people themselves to come to terms with, especially those like me who have lived for 41 years, who didn’t previously have such restrictions placed on them. Some regularly meet up or live together. It’s certainly not that well known outside of the CF inner circle that sufferers can’t really mix together.

Cross-infection is an issue of considerable concern for the CF community. Those with CF attract different bacteria or ‘bugs’ that grow in their lungs, which may be harmful to others who have CF but who do not have the same ‘bugs’.

Bugs such as B. cepacia complex and Pseudomonas aeruginosa can be transmitted from person to person by close personal contact, such as sharing rooms, sharing medical equipment, sharing cutlery or crockery, and by kissing or coughing.

There is little risk of transmission of ‘bugs’ in an outdoor environment, but travelling with other people with CF in a car or a coach, or meeting them socially would introduce a higher level of risk.

There is a worry that CF patients are more likely to pick up strains of these bugs from each other that are more difficult to treat than strains picked up from the environment. For this reason, CF Centres and Units are now encouraged to offer separated clinics.

This gives the expression ‘dangerous liaison’ a new meaning. But how does this work in practice?

I had a recent outpatient visit to Frimley Park hospital to assess the state of my lungs as part of my IV treatment. Up to a couple of years ago, I would have waited (and waited) in the reception area with other patients and their families until our names were called to go into the doctor’s room. I got to know a few other patients and we would often chat (and cough) and chat. We might even have some of the gourmet tea from the machine.

As my CF Unit has gone with the times and latest trends in CF care, on arrival, I am now ushered straight through to my pre-determined treatment room and the doctor comes directly to me (now there’s power!). The knock-on effect is that I don’t really see the other patients as I previously would have done. This might actually suit those that don’t want to engage with others about their CF.

We can hear the coughing from the separate treatment rooms, usually set off by blowing into the medical equipment, but we are unable to see each other. It’s like listening to the crickets on a warm climate but never actually spotting them. Our solitary confinement makes the clinic feel like we are staying in the Alcatraz ward of the hospital. A case of splendid isolation you might say…

If I do venture out of the room to ask for help and happen to come across someone else with CF during my journey, I’ll always try to acknowledge or speak to them from a distance. I won’t talk into my sleeve, like some FBI agent, I just won’t get too close as we speak. This does feel strange and slightly awkward. Unwittingly, one parent of a CF adult always covers their mouth when they meet me, which makes me feel a bit like a leper.

How does this cross-infection affect activities outside of the CF clinic?

A forthcoming CF fundraising black-tie ball has been organised in Southampton by a CF person I know and I’ve not been invited. I completely understand this is due to the risk of cross-infection so I don’t take it personally. It is a shame though as my mum, elder brother and his wife are all attending and I do look good in black tie!

Also, my mum’s Christmas card CF fundraiser will tend to feature me as the sole CF representative; and for my new gym membership in London, the management are looking to check if they have any other members with CF so that we are not exposed to each other.

From my experience, there’s only so much you can do to be pro-active. In my day-to-day life, I’ve probably been in close proximity with other CFers without knowing it – in offices, the underground, trains, pubs and public buildings like museums and sporting grounds.

In this brave new virtual CF world, it’s a shame that CF folk can’t openly meet up and chew the fat. By not being able to see each other’s body language, we miss out on the most powerful form of communication and engagement.

Our solitary existence has increased the use of other engagement channels like this blog, my forthcoming book, and social media such as Facebook, Twitter and the CF Trust online forum. Perhaps in the future CF will only be discussed in the form of text speak?

I believe that the CF community knows each other pretty well through our battle with this wretched illness. I think I have a quicker connection with a CF person that I meet for the first time than with some non-CF people because we already know each other’s pain and daily life struggle. In some ways, maybe we don’t need that face-to-face time getting to know each other?

I do feel it’s important not to hide your CF away and have at least one person with the illness that you can connect with on the phone or online. I tend to use the elder CF statesmen I know, Sean Bell and Chris Miller, for my sanity checks.

To meet or not to meet? That is the very real dilemma for people with CF. We need to know the risks associated with cross-infection and be as sensible as possible about how it’s policed. It’s yet another cross that we all have to bear.

Want to help CF people get a very important drug (Kalydeco) that’s being held up by cost – click here to sign the e-petition.

View a recent Mail on Sunday article about how a young CF chap has helped his CF by working out in the gym. The article also references me for my ‘flabs’ rather than my abs!

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 if you have not already done so.

Yours cup half full.

Tim

Tim Wotton

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 8,500 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.

Race for life

The true Olympic ethos has it that ‘it’s not the winning but the taking part that counts.’ This is also true of my family and friends who have stepped up to fundraise for my illness, cystic fibrosis (CF)*.

Perhaps prompted by my new openness via this blog, many family and friends have utilised their health and fitness to fundraise for the UK CF Trust, and I suppose, indirectly help me.

My parents, brothers, close family and friends in Southampton host a well-supported annual Christmas card fundraiser. My wife Katie has run two consecutive London 10K’s; my brother Chris and his wife Lisa have punished themselves running a couple marathons. Others have completed triathlons and the Great South Run and another dear friend is going to “run like mad” in the Great North Run this autumn.

You may remember from my ‘Show must go on’ blog last year that my good friend, Julian Archer, crazily cycled his bike from France to England, stopping off at shops on the way to ice his knees with bags of frozen peas, before joining me and my Phantoms hockey touring team in a charity hockey game.

More recently at the start of the Olympic fortnight, fellow hockey player and chum, Ben Sharpe, along with seven other “Mad Reservoir Dogs” entered the Adidas 24 hour Thunder Run – a continuous 24 hour relay run during which most if not all of them will have run a marathon.

I was unable to physically join Ben and his fellow runners for the actual race so I decided to prove my actual existence by emailing them a letter of encouragement prior to the race. This is something I have tended to do for the majority of guys that are kind enough to run for CF.

I wanted to thank them personally for running this in aid of CF, a condition that some of them would have known little about, and offer my congratulations on the great amount of money they had raised.

I explained that CF is a brutal illness which needs constant medication and care. That the average life expectancy is low but improving all the time (currently 41 years old which is the same age as me!).

I hopefully gave them some extra perspective by stating that many CF sufferers cannot walk till the end of their road or will struggle up a flight of stairs. I told them to cherish their health as it’s the greatest gift anyone can have and they should be proud to make it count.

I offered them the solace, as I do with all those who physically torture themselves in my name, that as hard as it gets – when they are struggling and ‘hitting the wall’ during their run – that they should think of me and remember that their lungs do work and they are blessed.

I’ve since been told by Ben’s brother, Richard, that one of the Reservoir Dogs team ran the race with my letter in his pocket. Another spoke unprompted that in the middle of the night while running the ‘graveyard shift’, when the physicality of the race was particularly onerous, that he was driven on by my words of encouragement.

This level of commitment and activity drew comparisons with the recent London Olympic Games, which I had the fortune to attend; visiting the Olympic Park twice to watch hockey and to Wimbledon three times for tennis. I also took my son Felix to watch the men’s bike race wiz past in Putney.

Seeing these supremely fit and healthy athletes in action  and maximising their potential is fantastic but I find it rather thought-provoking as someone who never had good enough health to ever follow similar aspirations. I envy their ability to run like gazelles and the lung capacity they have to extend themselves. I imagine that few of them are ever likely to know how lucky they are to be well enough to reach some physical prowess.

Conversly, there are many people who squander their health or who don’t feel the need to exercise to stay alive. In some ways, I am jealous of their blissful ignorance and apparent disregard for their fortunate health.

Where eagles dare

Full with Olympic spirit during the Games, I did go for a run after work around my own Olympic Park – the one behind my house – it’s called Morden Park and there were no spectators!

It was an extremely harsh run where my lungs were doing me no favours…

What do I think of when the going gets this tough and my lungs are screaming for me to stop? Where does the power come from to see my race to its end?

It has to come from within… I have to draw on my own motivation to keep running with breaks to stop and cough. There’s no winning for me. It’s all about the actual doing as I know the importance of exercise to my on-going health and survival.

When I’m hitting my own ‘wall’ on these runs, I often think of the words of Eric Liddell, the famous ‘Chariots of Fire’ runner, reading out a passage from Isaiah, Chapter 40:

‘He gives strength to the weary;

and increases the power of the weak.

Those who hope in the LORD will renew their strength.

They will soar on wings like eagles;

they will run, and not be weary,

they will walk, and not be faint.’

I may inadvertently inspire people to ‘bust a gut’ and raise critical funds for CF, but I find it works both ways. It’s their altruistic efforts that in turn inspire me to keep going and defying the medical odds.

The hard graft of those family and friends has made a real difference to the lives of the CF community – they have raised upwards of £30,000. These much needed funds WILL help to increase the median age of CF survival even further.

By breathing hard themselves, they have breathed life into the lungs of many CF sufferers. They all race to give life while I will continue to race for my very life…

If you feel inclined to take part and fundraise by running or by a more sedate activity, I encourage you to visit the CF Trust website for more information.
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 if you have not already done so.

Yours cup half full.

Tim

Tim Wotton

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 8,500 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.

Into the blue

Leaving the grey of England for a recent family holiday to sunnier climes allowed me to take a break from my cystic fibrosis (CF)* and diabetes… or did it?

In late June we went on holiday to Turkey. We had a great time – it was very hot with blue skies and a nice cooling breeze. It would be tempting to totally relax and take the foot of the pedal of my medical routine but even on holiday my CF comes along – lock, stock and barrel. After all, just because I’m taking time off, doesn’t mean that my sickness follows suit.

When I prepare for such a break, I spend less time packing clothes into a suitcase and longer getting my medication just right.

I need to bring a sizeable wash bag of drugs with me and this has to be exact with all the different variations (20+ types) and all my physiotherapy, nebuliser antibiotics and ice blocks.

For only a week, I painstakingly counted over 300 tablets into this bag. This always makes me feel dizzy. I have to get it right because once I’m at my holiday destination, there’s little chance of finding any replacement pills. I’ve been caught out before and learnt some harsh lessons. As my holiday progresses, I do find it strangely cathartic to see the bag continually diminish in size. It was also delightful not to have to rush my medication and be too prescriptive with my timings. I still needed to do them all, but while I was on holiday, my CF felt as relaxed as I was.

Another source of worry pre-flight was my nebuliser which enables me to breathe in an important antibiotic. I had been sent a replacement bit of equipment in the days prior and it was not working properly. This led to a frustrating scene in our kitchen where I simply bowed my head in silent angst and Katie said: “I have respect for you; I would have thrown it across the room by now!”

The off-shot of this nebuliser debacle meant that I had to bring two nebulisers with me to Turkey just in case the new one continued to miss-fire. Luckily, while over there it decided to behave itself – it must have also preferred the warmer weather!

At Heathrow airport, while waiting to fly out, it became apparent that my son Felix had been studying more of my daily medical routine than I had realised. During breakfast, Felix caught be taking my Creon enzyme pills and said aloud:”What are you putting in your mouth daddy?”

Later on in the holiday, he caught me again during one of our meals and exclaimed to Katie:” Daddy’s eating those funny sweeties again!”

Very warm weather is good and bad for me and my health. It’s good for my overall lungs and lung function and I cough a lot less than back in the damper conditions of home. The heat does however affect my diabetes increasing the risk of having a hypo.

I also have to be more careful than most people about being out in the sun as I have a high risk of getting sun burnt. This is because I’m fair skinned but also due to the change in my skin from previous years of taking the antibiotic Doxycycline. I wear high-factor sun cream and don’t spend too long out in the sun. This does tend to leave me whiter than other sun-seekers – I joke that when I’m swimming in the sea, I’m in danger of being harpooned!

Either way, even with great care not to over expose myself to the sun, after a few days in warmer temperatures, I am heavily prone to vicious heat rashes on my arms.

The swimming pool is the next potential concern not least for hygiene reasons but also depending on its level of chlorine. Too much of it causes me to cough uncontrollably.

A few years ago, I did the big daddy adventure with Felix when I took him to a large indoor water park which was heavily chlorinated. What followed was one of those mad days as a parent where each part of the activity is beset with problems…

As soon as I got into the water, I was coughing like a soldier after a WW1 gas attack. There was this monster water slide which Felix and I queued patiently to get to the top of. Once onto the slide, the pocket at the back of my shorts meant that we didn’t slide down in seconds with the water stream but rather we embarrassingly inched down over a few minutes. As a proud dad, I had to keep smiling to everyone in the queue while we were crawling down the slide and especially to Felix who thought we were going slow on purpose. At the same time, I was trying to suppress my omnipresent cough! Not one of my finest moments.

Luckily at this resort in Turkey, the pool was not overly full of chlorine and there was no water slide… phew!

Enjoying our slice of Turkey

I used swimming as a form of exercise during the week – it was too hot to go for a jog – both in the pool and in the sea where a swim out to the moored pontoon proved pretty strenuous when the waves were at their peak.

I also enjoyed some snorkelling in the sea just off the beach and realised that all my years of breathing meticulously into a nebuliser proved rather useful when breathing underwater with a snorkel!

During my stay, I visited an on-site Spa to partake in a skin peel treatment called ‘Hamam’- the Turkish delight of Spa treatments. I was asked in pigeon English prior to the treatment whether I had any medical issues. I lied and claimed to be ‘fighting-fit’ as people struggle to understand CF in my home country let alone when abroad in a foreign language.

The session involved me lying down on a heated marble slab for 15 minutes in sauna like conditions – quite an undertaking as I was already sweating profusely on arrival at the Spa. The masseuse than poured cold water all over me and preceded to wash me in soap suds and finished off with another dousing of cold water. I was then led (more like floated) to a cool room for a period of relaxation, and reflection that I had lost a layer of skin but was still smiling.

Other highlights on the holiday included seeing Felix do his first solo front crawl swimming and diving for his dive sticks; Katie battling with the Turkish residents every day at tea-time when they served up cake and a paddle around the bay in a kayak while furiously popping my dextrose energy.

Even though I was unable to take an actual holiday from my treatments, by being thorough with my preparation and medication, I was able to enjoy a proper break that wasn’t ruined by any unexpected health dilemmas. Indeed, my ‘into the blue’ holiday wasn’t affected by anything ‘out of the blue’!

Fellow hockey player and chum, Ben Sharpe, along with seven other “Mad Reservoir Dogs” have decided to enter the Adidas 24 hour Thunder Run on 28/29 July to raise money for Cystic Fibrosis. The run is a continuous 24 hour relay run during which most if not all of us will run a marathon. Please click here and give as generously as you can…

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 if you have not already done so.

Yours cup half full.

Tim

Tim Wotton

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 8,500 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

http://www.cftrust.org.uk/