This is about my lung transplant but an important part is missing – the love and support I received from my daughters (Julia, Melanie and Aimee) and my partner Chris. They were there all the time including during the critical operation – I can’t express how much it meant to me. It made the world of difference to my attitude and my survival.
Denise & Co
Vince shares his unique perspective of the importance of the treadmill room at Toronto General Hospital — both pre- and post-transplant — in his Denise & Co
Another person that I’m in debt to is Merv Sheppard who convinced the health authorities that fitness rather than age was the determinant of lung transplant priority.
And, always in my thoughts, is the person that donated their lungs so that someone could live. I don’t know who they are or anything about them but I’m in the process of finding the words to express my lasting gratitude in a letter to their family.
You may have noticed that I haven’t been around recently. My kids claim that I’ve in been in all-inclusive resort (as they call the hospital) and that I’ll be spoiled rotten by the time I get home – little do they know it’s way too late for that (or maybe they do!).
So here’s my situation in a nutshell. In 2005 I was diagnosed with breathing difficulties that they diagnosed as COPD (Chronic Obstructive Pulmonary Disease – usually associated with smoking or industrial processes). In 2008 they decided it was IPF (Idiopathic Pulmonary Fibrosis – no one knows where it comes from or how to get rid of it). They do know that it kills 3-5,000 Canadians a year, usually within 5 years of diagnosis. Last May Chris and I spent a month in Southern Italy and I functioned OK, and I also was playing tennis, although with the kindness of friends (thank you, guys!).
I went for a routine pulmonary check-up at St. Mike’s Hospital in July 2013 and they shocked me by telling me that I mustn’t walk home and they immediately arranged for a home supply of oxygen. From then on my need for oxygen steadily increased.
What did this mean for my everyday life? Well, it was an unpleasant social problem. I had to wear nose prongs 24 hours a day. My nose was constantly blocked. I was (as I called it) a phlegm factory. Before going anywhere I had to check on the number of stairs involved. I could sense the slightest slopes. I couldn’t leave home for more than 2 hours (one time I ran out of oxygen and had to get carried to the car). And showering was a major challenge. Hardest of all for me, as I’m sure those long suffering souls will agree, was my total dependence on other people.
Luckily, St. Mike’s referred me to the lung transplant program at Toronto General Hospital (TGH) – the hospital where the first lung transplant in the world occurred over 30 years ago and they now perform over 100 per year. Then I had to wait to see if I could get into the program. And to stay alive, they ordered a drug called Esbriet, the only drug designed specifically for IPF although, unfortunately, not funded by OHIP. I’m not sure if it helped – nor are the doctors – but I do know it cost me over $900 per week. The good news that I was a candidate for the lung transplant program came at the beginning of April. The next step was to go to the gym at TGH three times a week and wait for “the call”. I requested the lungs of a Kenyan marathon runner or a Scandinavian skier and waited.
I was in steady decline until on June 4 in the gym I was having real breathing difficulties and they shipped me off to emergency and eventually into the hospital until June 9. By then I was on just about the maximum oxygen level possible – 15 litres per minute at rest and up to double that for exercise. Everything was difficult and, of course, I was very restricted in my ability to go outside and enjoy social occasions.
Then I had another setback on June 19 and so I checked back into the hospital. But then a series of miracles occurred. They told me they had a donor of two lungs for me and at 1:30 a.m. the next day they started into the 10-hour procedure. By coincidence, Aimee, Dave and Desmond were visiting from New York so I was lucky enough to have Julia, Melanie, Aimee, and Chris looking over me. Then I was heavily sedated in the ICU, not making any sense and hallucinating (what’s new you say?). They then moved me to the Acute Care Unit (ACU) and, to my surprise, had to walk the 50 metres or so to get there. There I was under constant observation, had endless tests, and had about ten tubes sticking out of me. These were slowly removed and I gradually got weaned off oxygen until I was under 3L/min and then (hurray!) my new lungs were working independently! The reality however, was that I still thought I had lung and breathing problems and had to keep reminding myself that I had brand new lungs – I sometimes still have to do that today.
I then spent the next two weeks in the hospital. Luckily, the doctors were not only expert but attentive, the nurses young and energetic and the other patients, for the most part, very friendly. This is the point where I got introduced to the drugs required to minimize the chance of rejection of my new lungs. Suffice to say that there were lots of them. They made me gag for the first few weeks or so, and then I got used to them – just as well since I’ll need to take some of them for the rest of my life.
One of the drugs I’ll be on for the foreseeable future is Prednisone, which is a steroid. One of its effects is to boost energy and keep you awake and during those waking hours I thought of lots of things to do – poor Julia dragged lots of files into the hospital but, of course, I didn’t touch them and eventually they came home with me.
I’m tested weekly for the effects of the drugs, the type or amounts are changed accordingly, and key items such as signs of rejection, the FEV1 (Forced Expiratory Volume in 1 Second is an important post-transplant measure) blood pressure, white blood cell count, etc. watched very closely.
I was able to leave the hospital two weeks after my operation (earlier than most others that had a similar experience) and re-enter the normal world. While my breathing was fine, my body needed to catch up so I had to learn to walk again and after nine weeks I’ve still got some way to go. But I can get around town now and tackle stairs that I couldn’t manage a year ago but I can’t run for the bus – yet. For the three months following the operation I’ve had to work out at the hospital gym three times a week, give up both drinking and driving (because the drugs cause distorted vision). After the three months, my check-ups will become less frequent and I’ll go to the gym in my building.
So where am I nine weeks after the operation? Despite some minor issues I’m in great shape. My vital FEV1 capacity measure is around about 96%. In fact, my doctors are so impressed they are urging me to enter the Transplant Games – “you’ll be the oldest one there but you’ll blow them away.” I’d imagine they are one of the few competitions from which you are banned if you don’t take drugs! They are in Argentina in 2015, so I’m not sure if I will be ready by then. Luckily they’ll be in Toronto in 2016 so I have time to pick some events and train.
What I’ve learned is how few Canadians are donors – this probably applies to other countries too that don’t have mandatory organ donation. So sign up! I also learned that fitness is an essential ingredient. I’ve never thought of myself as particularly fit; my tennis being offset by my love of beer and greasy food. But apparently I was (and am getting there again); in fact, when they opened me up the surgeon remarked that I had the organs of a fifty year old!
Finally, thank you for being there. Keep active, exercise and look after your health!