OUR JOURNEYS

Memorial story

Peter SmoothyPeter Smoothy

in a letter by his sister

I want to share my story with you after reading the stories of courage on this web-site.

I am a 30 year old English woman currently on a one year working holiday visa in Australia. I am having the time of my life, but want to share with you the stories of my brother and sister.

My sister Karen Jane was diagnosed with PPH in October 1969. Nothing could be done. She died in December 1969 at the age of 22 months. At this time my mother was 7 months pregnant with me.

I was born 'normal' in 1970. My brother Peter Anthony Smoothy was born in May 1972. From the beginning my parents knew there was something wrong with Peter. He survived pneumonia 3 times before the age of 5. Twice my parents were told he wouldn't survive the night. At this time they shielded me from Peter's illness and I stayed with various relatives while he was in hospital.

The main point of this story is that Peter was a survivor. He was finally diagnosed with PPH and was put on medication. Despite being unable to walk very far he became an excellent student and with only part time education passed many exams. The upper school installed a wheelchair lift and ramps, but Peter's main mode of transport was his friends' arms.

Peter was the life and soul of the party and participated in amateur dramatics and was an armchair sports enthusiast.

After school Peter started working with me in the accounts department of a local construction company. He worked as hard as he could but as his health went downhill he could only manage part-time work. At this stage I believe many people would have given up and stayed at home, but Peter didn't want to miss out on anything. But he got so ill that in July 1994 he was put on the transplant list. In August he was put to the top of the list. My husband and I took him on a boating holiday in the Norfolk Broads. It was summer, but Peter was freezing cold and had to be pushed everywhere - never complaining.

On 23 September 1994 Peter had a heart and lung transplant at Harefield Hospital near London. His sense of determination and spirit meant that he recovered quickly. He felt like a new person. For the first time in his life he could walk, run and ride a bike without turning blue and collapsing. He was on top of the world. We went on holiday to New York City and to New Zealand. The company took him on a VIP day to Manchester United Football Club. He won the Peter Willmott award for personal achievement from the company.

Peter was part of a domino transplant, whereby his enlarged, but healthy, heart was given to a man dying of heart failure. Due to a set of co-incidences Peter met Brendan, the man who had his heart. It was a beautiful moment for both families.

Even though he felt better than he had ever felt, he had to endure side effects from the transplant operation and the drugs he had to take every 2 hours. He suffered epileptic fits and a couple of rejection episodes. After 2 years of relatively good health Peter started to reject again. Radiotherapy was ineffective. His lungs weren't functioning properly. He was on oxygen and had to be fed by a tube into his stomach. A second transplant was an option, but he was so sick it wasn't thought that he would not survive a second operation. We took him home in June 1997 and he made plans for when he would be well again, but despite battling for 25 years, Peter lost his fight for life on 8 July 1997.

Although, for his family and friends, this is a sad story, it is also inspirational. He NEVER gave up and when he was given the chance he lived life to the full.

I was pleased to see from surfing the internet that the gene for PPH has been found. I would like to be tested to see whether I carry the defective gene as this will determine whether or not I start a family of my own. I hold out hope that a cure will be found as I don't think I have my brother's courage to endure what he went through. I wish the PHA Association well and I wish I had discovered it sooner.

Kind regards,
Sandra Freeman

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.