THE BLOG
13/12/2017 07:57 GMT | Updated 13/12/2017 07:57 GMT

Keith Chegwin's Death, My Dad's, And Why We Need To Talk About Organ Donation And Little-Known Diseases

Chegwin's death rocked me even more when I realised that this vibrant man died of the same little-known disease at the exact same age as my dad

Ben A. Pruchnie via Getty Images

Hearing about the death of entertainment legend, Keith Chegwin filled me with sadness, as I remember his ever smiling and vivacious being on our TV screens; one of those faces synonymous with great children’s TV programming and good times!

But his death rocked me even more when I realised that this vibrant man died at the age of 60 of the little known disease, Idiopathic Pulmonary Fibrosis (IPF); the exact same age and condition which claimed my dad’s life just two years before on the date of what would’ve been my parents 33rd wedding anniversary.

Memories came flooding back of my dad, who like Chegwin, was also outgoing; the life and soul of the party, loved by people especially children and had a natural charm and energy which drew people to him like pollen attracts bees.

That is why there is something so bitterly devastating and cruel about IPF - it literally sucks the life out of you as the lungs become so scarred they no longer function.

Very little is known about the disease but according to the British Lung Foundation, roughly 6,000 people are diagnosed with idiopathic pulmonary fibrosis (IPF) every year in the UK, with men more likely than women to have IPF. Similarly, although it can affect anyone at any life stage, the majority of the diagnoses are made in people over 70. The causes of it are unknown but there are several theories.

The symptoms can sometimes be confused with COPD in the early stages but include shortness of breath, fatigue, swollen finger tips, weight loss and aches and pains amongst other things.

There is no known cure except that a lung transplant can make a huge difference if in the relatively early stages of the disease- subject to the recipient being strong and healthy enough to undertake surgery and that there is a suitable organ donor with the right blood type. Similarly, there are ways to extend and improve quality of life for those living with the condition but eventually death comes sooner them than for most living with a life threatening condition.

My dad exhibited most of these symptoms, but being a typical man, ignored them putting it down to getting older and being incredibly active in his day job and leisure time. However one day, he collapsed on the floor at home gasping for air, we just knew this was just more than being fatigued.

After a series of tests, the doctors were still unsure of what condition he had as the crackling sound on the lungs sounded as though it could be COPD. But one fateful afternoon, after another episode of breathlessness, my dad and I went to the hospital determined to get to the bottom of his condition. We waited to be seen and eventually an expert in the field gave the dreaded diagnosis.

I didn’t know what it was but all I knew was that we were finally grateful to be able to put a name to the condition that was debilitating my father. Leaving the hospital that afternoon, my dad and I went for lunch and I decided to have a quick google of the condition. It couldn’t possibly be serious as the doctor who had diagnosed him was so matter of fact and neutral,that there was no immediate cause for concern. He just said the name of the disease and left.  Surely if it was life threatening the doctor would have said so at that point?

However, sitting across from my dad, having googled the name and read about it,  my heart sank to the very bottom of my being. What I read was nothing short of a death sentence. One in five people with the disease will live for more than five years but for most people, at least 50% of those diagnosed, will be dead within just a few years.  And despite the increase in medical advances and research, to improve the life chances of those with IPF, it’s still pretty bleak.

In that moment my dad looked at me to find out what the condition meant. I uttered some words that didn’t betray the sense of sadness felt. How were we going to tell him? How was I going to tell my mum? The family? My dad, so full of life and with big plans for retirement, was now going to be cruelly robbed of his golden years.

Christmas is a particularly painful time for our family and for many who have lost loved ones.

 

One in five people with the disease will live for more than five years but for most people, at least 50% of those diagnosed, will be dead within just a few years

I have particularly fond memories of Christmas as it was my dad’s favourite time of year - full of festivities, fun, laughter, gifts, good food and Jim Reeves music!

Dad was diagnosed in the summer of 2013 and by Christmas that year he was totally dependent on portable oxygen, yet still able to be relatively mobile, travelling around the house, taking care of himself with a little bit of assistance & still speaking in his usual energetic way.

But by Christmas of the following year, 2014, he was bed bound and utterly dependent on loved ones to even do the smallest of tasks. He needed round the clock care. He was also living on morphine because the pain was so incredibly awful as there is not enough oxygen flowing around the body - putting a strain on his heart and vital organs. It’s heartbreaking to watch. 

Dad was in hospital full time at this point (being cared for by wonderful doctors and nurses of the incredible NHS) but we managed to plead with the nurses to have him home for three days - from Christmas Eve to Boxing Day. We all knew it would be his last and it was his dream to be home with the family. He was so ecstatic when this happened.

At this point, it was a miracle Dad was still alive - as he had gone for his last lung capacity test just two weeks before to see if he would still be able to have a transplant. However the consultant broke the news that unfortunately Dad had become too weak, he wouldn’t be able to survive the procedure.

He had 8% lung capacity. The consultant was stunned that Dad was still in the land of the living! Technically he should’ve been dead, but my dad, despite having His transplant dream shattered, had a steely determination (honed by his time in the military) that he was going to see in the New Year.

His weakened body, by now, was held captive by the oxygen machine keeping him alive. Yet despite this, he was on top form throughout the Christmas season; telling stories and cracking jokes with the little breath he had left and finding breath (we didn’t know he had from somewhere deep within) to entertain the steady flow of guests who had come far and wide to see him.

He was ever vibrant and charming - a showman giving his final run of performances for his adoring masses! Dad was determined that if this was his last Christmas then he was going to go out with joy and he definitely did!

A month later, in the early hours of January 20th, Dad died. He got his wish to see in the New Year.

By this point, In the days leading up to his death, he had deteriorated rapidly. His breath had become so incredibly laboured, he would sweat profusely and cry out in pain, as though he has run several marathons back to back, we knew the time was coming....  It still hurts to know he is gone but I am just so glad he is no longer in pain.

IPF is cruel in so many ways but one of them is the suspended hope that comes from being put on the transplant waiting list. For many people with the disease, if you are considered healthy enough and under 60 years old, you will be put on the waiting list and hopefully receive that life changing call - a transplant awaits!

We had a silver suitcase, our silver suitcase of hope, packed ready, right by the door, in case dad received that call. Our phones were perpetually charged up and stuck to our side, in case the transplant hospital called. But they never did. This was made particularly painful because, although organ donation consent is improving in the UK, we still have some of the lowest consent rates in Europe and the trend among Black and Asian communities continues to be worryingly low, which exacerbates situations like my dad’s - those with an already rare condition in need of an organ transplant.

Despite my dad not being given that gift of life through organ donation, he gave his body as a gift to others - agreeing to donate his organs in the event of his death, and for this, I am unspeakably proud of him and his legacy.

Organ donation is a sensitive topic and one that is now coming back onto the news and political agenda - with the launch of a new government consultation on compulsory opt in starting next Tuesday. However in the meantime, especially at this time of year,  whilst  most people are feverishly running around looking to buy gifts for loved ones, why not consider giving the gift of life, in the event of your death for someone else and become an organ donor? We don’t have to wait for government to force our hands to do the right thing.

And if this is too morbid for you, please consider donating to charities like the British Lung Foundation who are doing incredible work to raise awareness of IPF over the past few years; to see increased investment in medical research and treatments of the disease, which will ultimately improve the lives of many living with this debilitating, little known disease.

For more information about the British Lung Foundation visit: blf.org.uk