Patrick Comerford
I ended up spending much of the day in the John Radcliffe Hospital in Oxford yesterday, where I had been referred for a Myocardial Perfusion Imaging Test in the Nuclear Cardiology Department. The tests, checking the level of blood supply to my heart muscle, were recommended after recent tests in Milton Keynes University Hospital showed small traces or signs of sarcoidosis may have spread from my lungs to my heart some time ago.
I was first diagnosed with pulmonary sarcoidosis six years ago, back in mid-2009, but it may have been there a long time before that. Around the same time, I had also been diagnosed with a severe Vitamin B12 deficiency.
I suppose it could have been worse back then. I realised later that initially, with my symptoms, they were looking for lung cancer and the early onset of either MS or Parkinsons. So, in truth, thinking of the alternatives, I am much better off today than some expected back then.
But sarcoidosis – although it’s usually a benign condition – still sucks, to be frank. There is no nice way to talks about. I use a budesonide inhaler twice a day and formoteral inhalers too. But they control my sarcoidosis symptoms and my mild asthma – they do not cure them; and my B12 deficiency also means I have regular three-monthly injections.
I had been told to hope for remission at some stage, but that has never materialised. And – like everyone with pulmonary sarcoidosis – I have lived with the possibility of it spreading from my lungs to my heart, and perhaps also to my kidneys.
A Cardiac MRI scan in Milton Keynes University Hospital shortly before last Christmas showed a non-dilated left ventricle with mild septal hypertrophy and normal systolic function. In addition, patchy basal lateral and basal inferoseptal fibrosis of a low volume are indicative of a limited degree of prior cardiac involvement from sarcoidosis. These tests also showed up a large right renal cysts.
Myocardial perfusion imaging, which I was sent for yesterday, is a diagnostic tool used with patients who have suspected or known cardiac sarcoidosis. It can help identify areas of myocardial perfusion defects, which can be indicative of sarcoid-induced inflammation or scar tissue.
The test is often combined with other imaging techniques, like FDG-PET, to provide a more comprehensive assessment of cardiac sarcoidosis. Myocardial perfusion imaging assesses blood flow to the heart muscle.
The long journey by bus from Stony Stratford to the hospital in Oxford was in fact three bus journeys and took almost three hours. It was an endurance test matched only by a 24-abstinence from coffee. When I arrived, I was weighed and measured, and then had a myocardial perfusion scan that was in two parts – ‘stress’ and ‘rest’ – to see the effects of stress or exercise on the heart.
For the ‘stress’ part of the test, I had to exercise on a treadmill with a form of ECG test. I was then injected with a small amount of radioactive substance so that my blood flow could be detected. For this I received radioactive tracers – they may have been thallium-201, technetium-99m, or 13N-ammonia – that were injected into my body and detected by a special camera. This small amount of radioactive substance creates images that show blood flow to the heart muscle.
After resting for about 30 to 45 minutes, a camera was placed close to my chest to take images of different parts of my heart, similar to an x-ray. At the same time, my heart rate and blood pressure were monitored closely.
During longer breaks, I was expected to drink plenty of liquids to flush out the radiation from my system.
Myocardial perfusion defects appear as areas of reduced or absent blood flow. In cases of Cardiac Sarcoidosis, it identifies inflammation and defects can be used to identify areas of active inflammation in the heart muscle. It helps to differentiate between scar tissue and areas of ongoing inflammation, and this is important for treatment decisions.
Myocardial perfusion imaging is often used in conjunction with other imaging methods, such as cardiac magnetic resonance imaging (cMRI) and FDG-PET. However, the accompanying pet scan now has to take place at a later date, and a decision will be made early next week about whether this should take place in Milton Keynes or back in Oxford.
Sarcoidosis is commonly referred to in a friendly sort of way as ‘sarcoid’. But it is no friend to the body. It is an auto-immune disease or condition that causes the body to attack itself. No-one appears to know why this happens. But infection often precedes the first signs or symptoms. It often shows up first of all in breathlessness, blurred vision, painful joints or a general loss of well-being. Although many people with sarcoidosis look healthy, they don’t feel well. Sarcoidosis can even kill, although for most people who develop this condition a full recovery is likely.
With sarcoidosis, areas of inflammation may appear on the body. Any part of the body can be affected, but the most commonly affected areas are the lungs, skin, eyes and lymph nodes. One area alone may be affected, or it may be many at once.
As with many diseases, sarcoidosis is often present without causing any symptoms. When the symptoms do appear, however, they appear either abruptly, as in acute sarcoidosis, or gradually over a number of years, as in chronic sarcoidosis.
The symptoms of acute sarcoidosis can include fever, cough, joint pains and tiredness, and it makes people feel generally unwell. Red, tender lumps (erythema nodosum) can appear on the shins, and if the eyes are affected they become red and the vision becomes blurred. The lymph nodes can become enlarged and tender.
Over the years, chronic sarcoidosis causes coughing and shortness of breath as the lungs become more and more inflamed and their ability to function deteriorates. The eyes and shins may also be affected in the same way as in acute sarcoidosis.
Although sarcoidosis can occur at any age, I am surprised to learn that young adults are far more likely to develop it. It sometimes runs in families.
Sarcoidosis involves inflammation that produces tiny lumps in different organs. These lumps grow together to make larger lumps, damaging the way the organs and the body work. Many people with sarcoidosis have these lumps in their lungs, and while sarcoidosis is not cancer, one of the treatments may include a low dosage of chemotherapy.
It is not always easy to diagnose sarcoidosis as many other conditions display similar symptoms. My case may be like so many where it is only discovered after a chest x-ray reveals the characteristic swollen lymph nodes or shadowing in the lungs. Examining a sample of tissue taken from affected skin or lung under the microscope can help to provide an accurate confirmation.
I have now had sarcoidosis for eight years or more. The occasional flareup experiences are uncomortable to say the least, and can aggravate the mild asthma that was never treated in childhood. Sometimes, I end up at the end of the day walking around like the ‘drunken sailor’, with poor balance, sore joints, itchy and irritated shins and blurred vision. It has been going on for some years now – and there are more tests to follow.
After yesterday's round of tests were completed, and after lunch in the hospital, the three-bus journey back to Stony Stratford began, but in stages. I first caught the bus back into Oxford, and went for a stroll through Oxford and by the river at the Head of the River and Folly Bridge.
I then went to Choral Evensong in Pusey House, before catching the connecting buses to Buckingham and to Milton Keynes, having missed the last bus from Buckingham to Stony Stratford. If they had airport-style scanners before getting on a bus I might never have got home last night as the traces of radiocative injections still in my body might have set off all the bells and alarms.
On the previous day in London, Charlotte had to endure a 1.5 mile walk with me, 40 minutes each way between Euston Station and Duke Street. The reward for me was a visit too to the Ukrainian Catholic Cathedral on Ascension. But it was unfair on her.
Nevertheless, I am determined to continue walking a few miles each day as an enjoyable exercise, I have a healthy diet, and I am surrounded by love and well cared for.
As I have said so many times over these years, I have sarcoidosis, but sarcoidosis does not have me.
At the Head of the River and Folly Bridge in Oxford after a day of hospital tests (Patrick Comerford, 2025)
