It is Saturday lunchtime and Ken is taking a nap. So, I thought I would write to you. This will help me to be quiet in our wee apartment while he rests.
Ken’s release on Monday was inevitably a little nerve racking but in the first few days we are already building a routine. I’m getting back into work, the boys are enjoying their summer, Ken is settling into our temporary home and the hospital continues to provide unwavering support. He has physiotherapy 3 times a week, regular tests and bronchoscopies as well as a full day of clinic on Mondays. The clinic works closely with Ken to customize his meds and monitor his wellbeing as he slowly strengthens back up. They have told us it will realistically be a year before Ken is fit again but I can already see changes in his breathing. At rest he breathes with ease and when moving about it is his muscles for now, that let him down. It will take time for his lungs to reach their full potential but again physio will help increase their efficiency. Gone is the desperate struggle to catch his breath as he moves around. Gone are the weird but wonderful noises he used to make. What remains is Ken’s steadfast determination to crack his goal, well within the 12 months set by the hospital. Complications are common however. The road bumps will come in the form of reactions to medication and issues surrounding the need to keep his immune system sufficiently suppressed. It is rare for someone to sail through the first three months without a hitch but we are doing all we can to be careful. Everything needs to be sterile and washed. Public transport and crowds are out for now. But an outdoor patio in the shade, for a fresh orange juice at the end of a busy week is not only allowed, but encouraged.
The physio room is specifically for lung transplant patients. Ken knows this place as he attended intermittently over the two years we waited for his transplant. For me however, it is new. Those using the facilities are still waiting in hope for a suitable donor or like Ken, in post-transplant recovery. They range from children to the elderly. To be among them is heartbreaking, humbling and inspiring all at the same time. The room looks at first, like an ordinary gym with treadmills, bicycle machines and weights. Each patient has a caregiver who helps keep the equipment sterile and updates paperwork as each set of exercises are completed. Mothers help their daughters; Husbands support their wives, friends encourage friends. As I watched each team of two working together I realized this gym, while looking like any other, is actually pretty extraordinary.
What started with 4 friends in a café sending a note of encouragement on the day of Ken’s operation has turned into something beyond anyone’s imagination. (Paul Moen, Jack Burkom, John Ivison and Joel Crouse – Ken and I will always be grateful!) The ‘Go Kenny D’ campaign staggers us. Every day more photos come – more friends take the time and every image is enjoyed and shared. They have come from all over the UK and across Europe. New Zealand, Fiji, Dubai, Africa, Singapore, United Arab Emirates, Kuwait, India, The Caribbean, Japan, Australia, the Philippines and the USA include the countries photos have been sent from. Canada has been outstanding and Scotland has been behind us all the way. Old friends from school who we have not seen in years have participated. Work colleagues both current and from other stages in our careers took the time. Your kids have got involved as well as your Mums and Dads. And Ken’s former regiment, the Royal Scots sent photos from across the globe individually as well as from groups of veterans who gathered in both Edinburgh and the Highlands. (Special thanks to Bill Sutherland and George Higgins).
It is impossible to explain how much it means to Ken, the boys and I. We are doing our best to find real ways to pass what you have done forward. This week, we used your kindness to bring attention to the need for all of us, to register as donors. My baby brother, Craig (he will kill me for saying that given he is 44 years of age) worked very hard to help us. He did the research and calls to determine who would be the right people to approach. At the moment a white paper is being presented to parliament recommending an ‘opt out’ solution for donor registration in Scotland. This makes such good sense. The story you have helped create, being shared publically back home will help keep a spotlight on the issue and encourage more people to recognize the importance of this change in the Scottish donor system. The BBC have run a piece on both the radio and in print and the Edinburgh Evening News is featuring a full story this coming Monday.
Right now in Canada I do not believe an opt out option is on the horizon. But the online registration process takes less than 3 minutes! I know this because my friends have timed it! There is no age limit (a 93 year old man donated his organs recently and saved a 69 year old woman). 1500 people in Ontario alone, are waiting right now for another chance at life. Think about that. Registering as a donor and making sure family knows your choice is simple, but essential.
Tonight the lovely Sarah Hennessay and Pippa Aird are coming to have supper with us. Curry is on the menu. Ken will be thoroughly spoiled and while we miss our boys, we are lucky and grateful to be so well looked after by our Toronto family.
Sending love and thanks to all