I thought I would post this as it is quite interesting how the human body works and how the NHS doesn't work.
It started in my early teens when my face went bright red during exercise. My parents took me to my GP who measured my blood pressure, listened to my pulse and said that I was OK. Lots of GPs have done the same ever since. Later in my teens I got fed up with constant chest pains so went back to my GP. This time he said it was my intercostal muscles and sent me to a physiotherapist. Who said it wasn't.
I still have the pain as I write this nearly half a century later. Sometimes it is mild, sometimes it is totally debilitating. If I exercise regularly against the pain I can get fit, then I can take part in sports. But the pain is always there. So I played club rugby, climbed mountains, SCUBA dived, played golf and much more.
One thing I noticed. Drinking coffee (caffeine is a vasoconstrictor) made the symptoms worse. Drinking alcohol (a vasodilator) reduced the symptoms. So no guessing my drink of preference!
Then in my 40s, whilst living in Scotland, the pain got really bad one night, so I went to A&E at the Borders General Hospital. They put me in intensive care for a couple of days till my vital signs stabilised, then into acute care. They did many tests, sent me home, then brought me back for more tests. They discovered that I have very low arterial blood oxygen, which explains my blue lips. Then, not being able to find the cause, they discharged me.
One problem in all this is that I usually look fit and healthy, bursting with life, so people tend not to believe that I am ill. But the pain and the low oxygen are always there.
Then I married a doctor and she decided that we would sort this out properly. Since when I have suffered 12 years of specialists and tests. They find the symptoms but can never find the cause. So they discharge me.
About the same time I started getting occasional far worse episodes where I became seriously breathless and my blood pressure would collapse (we had bought a machine) to 80 over 50 or less. I would recover from these over a number of hours, but they became more frequent.
Then I had two hernia operations, the second one because the NHS made a mess of the first one. Each time I had difficulty recovering immediately after the operation, my arterial oxygen staying in the 80s% for some time (it should be 95+%).
So, we were getting nowhere. Then out of the blue last year a respiratory technician called me in for tests and I passed them all with flying colors with a well above average lung capacity and function. So she brought me back for an oxygen breathing test. This revealed that I have an 11.5% arterial shunt. This means that somewhere in my body the arterial and venous blood are mixing in a substantial manner, diluting the arterial blood and reducing the oxygen in it. This could be in my heart, my liver, my legs. Anywhere with a very big blood flow. So at last, after nearly half a century, I had a bit more information about my symptoms. But still the NHS showed no interest whatsoever in trying to find the cause.
Just over 18 months ago my episodes of debilitation ran into one another, with the occasional respite and they got progressively worse. I told my GP. I demanded to see a respiratory consultant. Who I saw twice, telling him my symptoms and that the debility was rapidly getting worse. Both times he did nothing.
Then I saw another specialist privately about my knee pain. He gave me a very thorough medical. He said the arterial shunt should be investigated starting with checking for pulmonary hypertension. He said I was wasting my time with secondary care (my local hospital) and that I should go to tertiary care (national centre of excellence) and suggested the National Heart Hospital at the Royal Brompton in London. So I did, privately.
As an expert on doctors, specialists and tests I can tell you that tertiary care is a different world. The tests are done to a much higher standard and have found out things about my heart that secondary care missed. However we still haven't found the shunt. This is still ongoing.
The debility got so bad that I could often hardly walk. Then one night I could not sleep through pain in my side and breathlessness (my wife was away on business). The next night was worse. At rest I was breathing as hard as I could and was only just holding off unconsciousness. Complete pulmonary collapse was near. I rang 111 and they told me to take the morphine I have for my bad back. This advice could very easily have killed me by suppressing my breathing centre. Never use 111. In the morning I rang my GP and she said ring 999. I went into A&E on oxygen and under a blue light. My vital signs (whilst on oxygen!) were a blood pressure of 80ish over 50ish and arterial oxygen in the 80s.
In A&E they did a chest X Ray, the registrar said I had fluid on my lungs and they would stick ultrasound guided needles into them through my back to take samples. Before I could enjoy this undoubted pleasure I had a visit from a consultant who said that this was utter rubbish and that I had bilateral pneumonia. She put me on large intravenous doses of two antibiotics.
Two days in I was still on oxygen and still breathing like a train so they did a CT scan of my lungs. This revealed that I had lots of blood clots trapped in my blood vessels in all three of my right lobes and one of my two left lobes. This is called pulmonary embolisms and can be caused by many different things, such as deep vein thrombosis or cancer, creating clots which travel in the blood till the lungs trap them. This prevents oxygenated blood from getting from the lungs to the rest of the body. The hospital put me on two different anti coagulants.
So no wonder I came so close to death. An arterial shunt plus bilateral pneumonia plus pulmonary embolisms. There wasn't much lung left working. What was especially annoying is that I has seen the pulmonary consultant twice in the previous six months or so. I has told him my symptoms and that they were getting worse. He did nothing and I ended up with a near death experience and arriving under a blue light.
I was on oxygen for ten days. They discharged me to home nursing. Now I have to go back regularly for blood tests for the warfarin anti coagulant. Before I left hospital the consultant said that they didn't intend to do any more tests. They were quite happy for me to have a shunt and embolisms and were not bothered trying to look for the cause. Despite the fact that a big shower of embolisms could very easily kill me at any time. I have had a number of relapses since I was discharged but am very reluctant to go to hospital when this happens, for obvious reasons. When it is bad I have to stop to get my breath back twice just going up a single short flight of stairs at home.
My wife "had words" with the consultant and he agreed to very limited further action. A halter heart monitor test and a repeat of the oxygen shunt test.
So somewhere in my body there is a vascular fault diluting my blood, also something is pumping blood clots into my blood. Possibly the same thing. It is utterly beyond the capability of the NHS to find out where these are. They are quite happy just to treat symptoms. In the meantime I have to lead an often severely debilitated existence in permanent pain. But I can still usually get to the pub and appear normal and healthy!
My feeling is that the medical profession and the NHS have failed me repeatedly over many years. Also I cannot help but think that the American medical system would have found the cause of my symptoms a very long time ago, and probably fixed them.
