Thomas Kelly is living with a life-limiting heart condition. He thinks only about 10% of his heart is working at the moment.
Thomas was first diagnosed when he was having pre-op tests for a prostate operation and the resulting diagnosis, and the cancellation of that operation because of what they found, has totally changed his life and his outlook on life.
Being diagnosed and how life changed
“So they [the hospital] said, “You have an irregular heartbeat.” At the time I didn’t know what that meant. I had no ill effects or anything. Then sure enough, I ended up with a pacemaker and a defibrillator, and then they messed around with the electrics in the heart, and I’m on loads of tablets a day. Basically I should have died last year.”
Thomas admits that when he was first told about St Clare Hospice he didn’t want to know – or think about hospice care.
“I ignored the advice to start with, because thought that you only go to the hospice to die. It was unfortunate because at the hospital, when I had my heart diagnosis they went through what was going to happen to me when I died, which didn’t make me very comfortable. Then the doctors surgery phoned to book me in to the hospice, and I said, “I’m not dying.”
Thomas wasn’t ready to talk about death and dying – he shunned the idea of a hospice for quite some time until his breathing became too difficult to manage without specialist help.
Thomas explained that he ignored the hospice idea for about a year. However, he was finding life more and more difficult. Just walking and moving around was taking its toll on his breathing and energy.
“It was really down to Esme [the hospital heart nurse] that got me interested again in the hospice. She said “It’ll be worth a try, Tom.” So I said, “Fine.” And I have, and I went to your four-week breathlessness course which I found very positive, very realistic. The team at St Clare are not making any false promises. But they would show us breathing techniques to try and help the process of breathing. It helps with the panic attacks that you get when you can’t breathe. They can be very frightening. “
Thomas added, “St Clare and the drugs have somehow kept me going. I can’t walk very far at all now. The doctors said it would just wear me down, until either in the end I have a heart attack or my heart stops altogether.”
How the St Clare Breathlessness course helped make each day more manageable
Thomas said, “The course relates your heart to your everyday life. One of the exercises that I’ve learned, and will always practice, is what I call the picture frame exercise. I always practice that whether I’m feeling unwell or not because it’s an easy one to do. And the way they teach you to climb stairs. I use that all the time too.”
“I also learned pacing myself was important. The physios at St Clare did the old battery analogy that, I kick off in the morning and I’ve got so much in the tank and if I use it all up at once I’m buggered for the day so I’ve got to spread it out.”
“I just thought I could recharge by just lying down for half an hour, but unfortunately my heart condition doesn’t allow that. If I knacker myself for the day, I am knackered for the day, there’s no coming back. I’ve got to wait till the next day before I think about anything. And when I’ve gone really silly, I’ve knocked myself out for two days.”
What does “going really silly” mean?
“Oh, go shopping down at Sainsburys, and push trolleys there and get loads of stuff, and then I unload it. Now I can’t carry too much anymore, and I can’t walk far, so that’s why I need a trolley, of course, I used to walk around with baskets. That’s a big change. I need the trolley.”
Life without St Clare
“Without St Clare in my life I’d be not as comfortable as I am now. I think I would have deteriorated sooner. I mean, I’m going to go downhill anyway, I just accept that, but I think I would’ve gone downhill sooner without St Clare.”
Being there for my family is important
Thomas explains that he is also working alongside St Clare on his breathing because he feels he owes it to his wife and his family. Before he retired, Thomas was a consultant, driving all over the country working 18-hour days. Now, with his health in decline, he feels it is only fair that he makes an effort to ‘keep on the straight and narrow’. He wants to be able to enjoy the activities they love, including going on cruises and spending time on his allotment with his family.
“My goal is to keep going on cruises. I have kidney problems now because of all the these drugs but that is my aim. I’ve just done five days in the fjords and have another one planned for Spring. That is my goal, just to get there.”