Heart involvement & Aortic Regurgitation
Around the time the disease was first diagnosed, Dr J (my rheumatologist) referred me to a cardiologist, Dr. B, who ran a few investigations such as echocardiograms (ultrasound of the heart - similar to what pregnant women have to show the baby in the womb) and MRI scans.
These showed that the disease had damaged various parts of my cardiovascular system - mainly the aorta and carotid arteries.
The aorta is the major artery leaving the heart, which branches off to supply oxygenated blood to the rest of the body's organs. It has a "root" which is the bit going upwards leaving the heart, and an "arch" where it curves back down towards the lower parts of the body.
Within the aortic root is a valve called, originally, the aortic valve. This acts as a one way valve to allow blood out of the heart (left ventricle) when it pumps, but prevents blood in the aorta flowing back into the left ventricle when it is relaxed, which would cause an increase in pressure within the heart and could be damaging long term.
The disease process had caused damage and scarring to the aortic tissue, and ultimately weakened it. This meant it had widened with all the pressure of blood being pumped through it, and by widening it had stretched the aortic valves. The valves now did not close properly and do their job, so after each pump of the left ventricle, there was a continual back flow of blood into the heart.

As well as this, the carotid arteries which take oxygenated blood to your head and brain, had been damaged, but this time the damage had caused "stenosis" which is a narrowing of the artery! This means that the narrow artery is more susceptible to clots forming and lodging there, which could cause a stroke.(NB in the image below the narrowing of the carotids is caused by a "plaque" e.g. of cholesterol. In my disease this is not the cause of the narrowing but is a good illustration of where the narrowing occurs).
So to protect the heart and prevent my blood pressure becoming high enough to cause further widening of the aortic root, I was put on beta blockers and ace inhibitors (see Drug Therapy section). To prevent the risk of stroke I was started on aspirin.
Dr B retired and I was seen by Dr A - who continued to monitor my progress and laid out the future possibilities:
Basically the aorta was likely to continue to widen over time. Presently it was within an acceptable range so he felt annual monitoring was fine. Ultimately he expected it to widen to a point where I would need surgery to replace the root and possibly the valve inside it. He said this was likely to be within the next 5 years.
I was not yet 20 years old, and someone had just dropped a bombshell on me. I was scared, angry, thinking this would be the end to my pretty active lifestyle. I thought I would have a few more years of running about and climbing mountains, then it would be all change.
As it turned out, I didn't require surgery for almost 15 years.
These showed that the disease had damaged various parts of my cardiovascular system - mainly the aorta and carotid arteries.
The aorta is the major artery leaving the heart, which branches off to supply oxygenated blood to the rest of the body's organs. It has a "root" which is the bit going upwards leaving the heart, and an "arch" where it curves back down towards the lower parts of the body.
Within the aortic root is a valve called, originally, the aortic valve. This acts as a one way valve to allow blood out of the heart (left ventricle) when it pumps, but prevents blood in the aorta flowing back into the left ventricle when it is relaxed, which would cause an increase in pressure within the heart and could be damaging long term.
The disease process had caused damage and scarring to the aortic tissue, and ultimately weakened it. This meant it had widened with all the pressure of blood being pumped through it, and by widening it had stretched the aortic valves. The valves now did not close properly and do their job, so after each pump of the left ventricle, there was a continual back flow of blood into the heart.

As well as this, the carotid arteries which take oxygenated blood to your head and brain, had been damaged, but this time the damage had caused "stenosis" which is a narrowing of the artery! This means that the narrow artery is more susceptible to clots forming and lodging there, which could cause a stroke.(NB in the image below the narrowing of the carotids is caused by a "plaque" e.g. of cholesterol. In my disease this is not the cause of the narrowing but is a good illustration of where the narrowing occurs).
So to protect the heart and prevent my blood pressure becoming high enough to cause further widening of the aortic root, I was put on beta blockers and ace inhibitors (see Drug Therapy section). To prevent the risk of stroke I was started on aspirin.
Dr B retired and I was seen by Dr A - who continued to monitor my progress and laid out the future possibilities:
Basically the aorta was likely to continue to widen over time. Presently it was within an acceptable range so he felt annual monitoring was fine. Ultimately he expected it to widen to a point where I would need surgery to replace the root and possibly the valve inside it. He said this was likely to be within the next 5 years.
I was not yet 20 years old, and someone had just dropped a bombshell on me. I was scared, angry, thinking this would be the end to my pretty active lifestyle. I thought I would have a few more years of running about and climbing mountains, then it would be all change.
As it turned out, I didn't require surgery for almost 15 years.

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