The lead up to surgery
Each year from my early twenties, I would visit for routine echocardiograms, MRIs and expect to be told when I would need surgery. Each year the answer came back that my aortic root diameter was stable, had not really changed significantly, and so things could wait a while longer. Initially this was year by year, but after a while I got to know my cardiologist Dr B really well, and he could see a trend in stability for me.
"It could be in 5 years it could be in 10 Jamie, at the moment we don't really know. You are already doing things most patients wouldn't be doing, your heart seems to be coping well, this is a balance between interrupting your lifestyle and ensuring your health. At the moment you are doing great."
So after a while I just tried to forget about it and enjoyed life.
A summary of life leading up to surgery includes working as a mountaineering instructor, kayak instructor and general outdoor educator throughout the UK and overseas. Personal climbing throughout Europe, the Middle East, New Zealand and Cuba. This is not designed to be a "wow" list of achievements, but to show that I was often spending long amounts of time in remote environments doing pretty physically demanding activities, and suffered no significant ill effects.
Physical achievements include alpine climbing up to 4000m. Summitting Kilimanjaro 5895m (2003) Running the Auckland marathon in New Zealand (2009) regular hill running, road cycling and all the other outdoor activities I love to do.
I operated within mountain rescue teams, carrying stretchers and so on. Overall my point is that I was never held back or felt I was the weaker link in any group of people, and it was easy to forget all about the heart.
On returning from living in New Zealand in 2012, a couple of things happened, which may or may not be related.
Firstly I had a PET scan at the end of the year which showed there might be some possible inflammation still in the aortic root, and so I was restarted on methotrexate (this has been covered in a previous post).
Then, before Christmas 2013 I had an appointment to discuss my latest MRI scan. Dr B the cardiologist told me that finally some change had occurred in the aorta and it had widened sufficiently for him to suggest surgery was needed in the next 18 months or so.
This was a bit of a shock, and I had to take some time to let it sink in.
Another appointment after Christmas proved to be even more surprising.
Dr B admitted that he was really thinking I needed to have something done by the summer of 2014, which was more like 6 months than the previously discussed 18 months.
We talked through the pros and cons of everything, and I agreed that this would be the most sensible thing to do. I had started studying medicine at Swansea and having the op over the summer break would allow me to recover in time to start my second year in September. Leaving it later would make it hard to timetable a suitable recovery time which wouldn't interrupt my studies.
I was happy to agree to everything, but was pretty nervous and unsure of the impact this would have on me. Mo put me in touch with a friend of hers who she had discovered, had a congenital heart defect (ie at birth) which had required multiple operations over the years. She was also a climber, outdoor instructor and runner, and I started exchanging emails with her to find out how it had impacted on her life.
I wanted to cram lots of good stuff into life before the operation. Partly because I knew there was a slim risk of not waking up from it, but mostly because I knew I would have to do a lot of enforced resting in recovery, and wanted to make up for it beforehand. The months before the operation, we climbed plenty, I climbed as hard a route as I have ever done and felt at the top of my game. We got married in April (this had been planned for over a year but was just good timing I guess), and spent plenty of great family time together too. I had a good trip to the Alps with my best mate getting some good climbing done to 3700m, and generally enjoyed life.
On 20th August 2014 I arrived at the hospital to have the operation.
"It could be in 5 years it could be in 10 Jamie, at the moment we don't really know. You are already doing things most patients wouldn't be doing, your heart seems to be coping well, this is a balance between interrupting your lifestyle and ensuring your health. At the moment you are doing great."
So after a while I just tried to forget about it and enjoyed life.
A summary of life leading up to surgery includes working as a mountaineering instructor, kayak instructor and general outdoor educator throughout the UK and overseas. Personal climbing throughout Europe, the Middle East, New Zealand and Cuba. This is not designed to be a "wow" list of achievements, but to show that I was often spending long amounts of time in remote environments doing pretty physically demanding activities, and suffered no significant ill effects.
Physical achievements include alpine climbing up to 4000m. Summitting Kilimanjaro 5895m (2003) Running the Auckland marathon in New Zealand (2009) regular hill running, road cycling and all the other outdoor activities I love to do.
I operated within mountain rescue teams, carrying stretchers and so on. Overall my point is that I was never held back or felt I was the weaker link in any group of people, and it was easy to forget all about the heart.
On returning from living in New Zealand in 2012, a couple of things happened, which may or may not be related.
Firstly I had a PET scan at the end of the year which showed there might be some possible inflammation still in the aortic root, and so I was restarted on methotrexate (this has been covered in a previous post).
Then, before Christmas 2013 I had an appointment to discuss my latest MRI scan. Dr B the cardiologist told me that finally some change had occurred in the aorta and it had widened sufficiently for him to suggest surgery was needed in the next 18 months or so.
This was a bit of a shock, and I had to take some time to let it sink in.
Another appointment after Christmas proved to be even more surprising.
Dr B admitted that he was really thinking I needed to have something done by the summer of 2014, which was more like 6 months than the previously discussed 18 months.
We talked through the pros and cons of everything, and I agreed that this would be the most sensible thing to do. I had started studying medicine at Swansea and having the op over the summer break would allow me to recover in time to start my second year in September. Leaving it later would make it hard to timetable a suitable recovery time which wouldn't interrupt my studies.
I was happy to agree to everything, but was pretty nervous and unsure of the impact this would have on me. Mo put me in touch with a friend of hers who she had discovered, had a congenital heart defect (ie at birth) which had required multiple operations over the years. She was also a climber, outdoor instructor and runner, and I started exchanging emails with her to find out how it had impacted on her life.
I wanted to cram lots of good stuff into life before the operation. Partly because I knew there was a slim risk of not waking up from it, but mostly because I knew I would have to do a lot of enforced resting in recovery, and wanted to make up for it beforehand. The months before the operation, we climbed plenty, I climbed as hard a route as I have ever done and felt at the top of my game. We got married in April (this had been planned for over a year but was just good timing I guess), and spent plenty of great family time together too. I had a good trip to the Alps with my best mate getting some good climbing done to 3700m, and generally enjoyed life.
On 20th August 2014 I arrived at the hospital to have the operation.
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