Graham Brushett received a heart and kidney transplant in 2006
Me on ICU
The Brushett Family
I’m the ugly one with the beard. In the photo to the left I am being interviewed by Matt O’Donoghue from Granada Reports in July 2006 a couple of weeks after Nizar Yonan had carried out my operation.
The middle photo shows a person hanging onto life on January 1st 2006. Eight months on dialysis was required to get me stable enough for a transplant.
On the right is my family which is only together courtesy of my donor and his family.
So how do you get to need a simultaneous heart and kidney transplant? Thanks to my 15 year old donor and Nizar Yonan I am able to share this tale with you because the ‘Gift of Life’ came my way in June 2006 at the Wythenshawe Transplant clinic.
The journey is worth describing because so many people believe that end stage organ failure could never happen to them or someone they love. How wrong they are. Over 130,000 people have received organ transplants in the UK. 42,000 corneal procedures have restored sight to UK citizens. Over 22,000 people are walking around today with someone else’s kidney in their body, spared the misery of dialysis treatment. But everyone is so fortunate. Through the NHS we all have the right to a transplant provided we meet the relevant medical criteria. So surely we all have a responsibility to help the NHS to deliver this life saving right? Even with a tremendous 16 million volunteers on the Organ Donor Register people sometimes have to wait a long time for a life saving transplant. Tragically for over 1,000 people each year time runs out. I now dedicate my time to reduce this needless waste of life.
It transpires that probably my journey into a transplant started at birth back in 1955. Not until the mid 1990’s was I diagnosed with Desmin Storage Myopathy, a pretty rare inherited muscle wasting condition. So, no problems until I was sixteen. I had trials to play professional football but we found that my heart was enlarged and distended. Dr Conway at Southampton General hospital recommended an 18 month break from sport. An earth shattering blow for a ‘sportaholic’ such as myself. Soccer ambitions disappeared over night.
The same problem came back to haunt me when I had been accepted for the graduate entry scheme to join the West Midlands Police Force in 1976 pending a medical test. The test shed light on a suspected heart murmur. “Thank you, but no thank you” came the response from the police.
Via the Birmingham Longbridge Austin Rover car factory I ended up teaching in Bolton in 1983. Very fit, very healthy, very much into soccer, squash, basketball, tennis and golf. I coached a number of school sports teams alongside my ‘A’ level teaching at Rivington and Blackrod High school.
A month after my son was born in 1993 and the day after another exhausting squash match I felt a little ’faint’ walking to my classroom to teach another session of ‘A’ level Government & Politics. Maybe it was the thought of explaining to a group of 17 year old students how Margaret Thatcher had transformed British politics in the 1980’s that affected my metabolism? By 6pm I was sent by erstwhile GP, Dr Martin, to Bury General Hospital.
“You have experienced brady-tachy cardia young man – a pacemaker will sort you out”. Great. Throw in a few more terms like atrial flutter, sick sinus syndrome and arrhythmia alongside a load of nasty medication and you end up with a very distressed wife coping with a young baby and a patient that cannot believe what is happening to him!
Dr Bennett’s pacemaker installation at Wythenshawe and an ablation allowed normal service to be resumed. He fitted a dual chamber, demand pacemaker. A few models later Dr Shearer accepted that my tiredness and lethargy required further investigation. The pacing was doing its job. Something else had to be considered.
Enter Dr Hilton-Jones in Oxford. “You have Desmin Storage Myopathy – probably an inherited muscle disorder that is causing your muscles to weaken.” Nice one. This diagnosis made the picture more complex. Was the heart condition purely electrical or were other factors limiting its output?
Cutting a very long story short let’s skip to heart failure and left systolic dysfunction. Simply expressed this is when the heart is beating like mad to achieve very little oxygen output, as measured by the ejection fraction. As a result the heart works harder and sets up a vicious circle. The muscle wall of the heart gets bigger as its pumping action gets less effective, so the wall thickens and pumps less oxygenated blood to the body and so on.
But what do I know? I’m only the patient. Let’s keep it simple....I am diagnosed with cardiomyopathy.
Insufficient oxygenated blood getting round your body is going to cause problems eventually, despite medical intervention. Give up sport, retire from work aged 47 and slowly recede into a shell. Family life become very reclusive – immense stresses and strains take their emotional and psychological toll on all of us. A busy husband and father turns into a bed ridden shadow. Not quite what you hoped from life.
Most of 2004 and 2005 is spent either in Fairfield Hospital in Bury, the Royal Salford or at Wythenshawe. Congested heart failure leads to the body retaining fluid. Huge problems with oedema left me in ward F5 at Wythenshawe for more weeks than the staff would like to remember! Mind you they sold a lot of tickets to view the naked night time walks that I took in my sleep – or is that a legend they made up?
Dr Nick Brooks and Dr Petra Jenkins listed me for a heart transplant in August 2005. Forty days later I had a stroke. Dr Roberts my neurologist calls it an ‘oxygen dump’. Not enough oxygen getting round the body has potentially fatal consequences. I had eaten. Limited oxygen supply goes to the digestive system. The brain gets starved of oxygen – I go deaf, blind and ‘gaga’. Fortunately the sight gets switched back on and one ear decides to play again. The balance remained impaired. Some say I am still ‘gaga’.
At this point you get taken off the transplant list because you are too unstable. Fifty days later on my wedding anniversary in October 2005 an embolism (blood clot?) to my right kidney leaves me with no renal function and a scary visit to Wythenshawe’s intensive care unit.
Dr Venning and Michelle Murphy got me accustomed to life on dialysis – a very dodgy experience if you have heart failure. They helped to restore my creatinine levels to a point where a double transplant could be justified, before my lung function became too weak. I was switched to ward G2 at Royal Salford and dialysed until my first transplant call at the beginning of June 2006.
Guess what, the plane carrying the organs wouldn’t take off from Scotland. So I woke up the following morning, having been fully prepped for the operation, to find my old heart still struggling away. Within a fortnight I got the second call which successfully got us all through, even with 10 days post operative sedation. Tragically my mother died during the sedation period. It is tragic too for the young man and his family that enabled my life saving operation to take place.
A major transplant is a very bitter-sweet experience. The bitterness is directed at my body letting me down in the first place! The loss of my previous life is difficult to accept. The distress for my family witnessing my decline and several near death experiences is very difficult to overcome. The long wait for the narrow window of opportunity in which the operation can take place can leave you feeling a victim of the process.
The greatest sadness is the loss of the donor’s life and the tragedy their family have to endure. No words of gratitude would ever suffice. Yet I know that donor families do get some crumb of comfort from the fact that their altruism has saved lives.
And now?
Using my teaching skills I go into schools, colleges, universities and hospitals to promote greater commitment to transplants and donation. It is my tribute to my donor. This is my way of repaying the huge investment of money, time and care the NHS has bestowed on me. An enormous number of very gifted and caring health professionals have kept me afloat. So too have my wife and son – family members suffer the most. Transplants are an amazing team performance.
Between April 2007 and March 2008 3,235 transplant procedures took place. A further 2,488 corneal procedures helped to restore sight to many people. All this was achieved through the altruism of 809 deceased donors and 854 living donors. We now need to get behind the implementation of the Organ Donation Taskforce recommendations to increase the number of transplants carried out by 50% over the next 5 years.
For my own personal contribution to this cause I have set up the Donor Transplant Education Group (DTEG). Leaflet appeals and websites may encourage people to become donors if they are already that way inclined. Face-to-face education is more effective because it can directly address the concerns that all people have about tissue and organ donation. I use my teaching skills to inform college and university students about the amazing benefits that transplants can bring to any family. My ambition is to embed this campaign into the curriculum of all secondary schools, colleges and undergraduate courses.
But that costs money, but what value do we place on a life? To get involved please email graham.brushett@yahoo.co.uk. Collectively we can make a real difference.
The collaboration of many people has enabled me to get to this position. Paramedics, volunteer drivers, ambulance drivers and porters have shunted me miles around different hospitals. Too many technicians to mention have analysed most of my body fluids. No ‘oscopy’ has been missed. Hundreds of scans and X-rays have been done. Phlebotomists have probably taken from me more blood to examine than the 50 units I was given to get through my 14 hour operation. The renal team at Salford kept me going until the Transplant team at Wythenshawe implanted the vital organs. After my heart had been implanted Ravi Pararajahsingham and the kidney transplant team from Manchester Royal finished the job off. I have so many people to thank at the Jim Quick ward, the teams of coordinators at Manchester and Newcastle, the New Start team, the army of NHS administrators and a very special modest carer I call ‘Gertie’. Hundreds of nurses and auxiliaries from all around the world have fed me, washed me and given me hope.
But what a waste of time, money and effort all this would have been if my donor family had said ‘No’. I sincerely hope this never happens to your family.
Graham Brushett April 2009
