When a heart attack isn't a heart attack!!

A few days ago I was talking with Ron West, and he mentioned that he was going to have some tests on his heart.  At the time I said that when we had more time, I'd tell him about my experience of having a "heart attack".  Having thought about it though, its worth re-telling here as it might be useful for any of you to know about.

 

Let me first say that I have always had very good results whenever I have had tests done on my heart.  I have regular ECG's and Echo cardiograms, and am always told that my heart is working well and is very strong.

 

However my father died of a heart attack, very young, and his mother took medication for a heart condition for many years.  So there is a family history.

 

In 2000, as a precaution when they were investigating my growing weakness, and before I was diagnosed with Inclusion Body Myositis, my heart was given a full MOT, whilst I was in hospital having other tests.  They even did an Angiogram, where they ran a tube up from my groin into the coronary arteries, to check that these were clear.

 

Anyway, fast forward to the end of October 2005.  I'd been feeling a bit under the weather for a few days, with what felt like a chest infection, and finally one Sunday morning, I realised that I needed to do something about it.

 

Being a weekend my doctors surgery wasn't open but there was a NHS Walk-In Centre in Croydon, so I suggested to Mum, who was staying with me for a few days, that I'd go up there and see if I could get to see a doctor and get some antibiotics.

 

When I got to the Walk-In Centre, after having struggled to get up a huge step to get in, I was told that there were no doctors available, and there were unlikely to be any until early afternoon.  The nurse suggested that I go up to the local hospital, Mayday Hospital, and see a doctor at the out of hours service there called Croydoc.

 

Croydoc, was mainly a telephone based out of hours service, where you could call up and speak to medical staff and they would advise you on what treatment you needed, or send a doctor out to you, or refer you to the hospital.  There is also a small number of doctors on site, who will see people if required.

 

When I got there and registered, I had to wait about half an hour before being seen.  When I got in to see the doctor, I explained about the fact that I was feeling lousy and that it felt similar to how I had been on other occasions when I had chest infections.  I also explained that I had Dermatomyositis and Inclusion Body Myositis, and gave her a full list of all my medication. 

 

Now many of you will know "that" look a doctor gives you when you mention something like DM or IBM, and you know instantly that they don't know what you are talking about.  The arm length list of medication I'm on certainly didn't help.

 

Well she listened to my chest, and did all the normal things, and asked all the normal questions, before saying that she wasn't sure and really wanted me to go down to A&E to have an x-ray.

 

So I went along to A&E, which was in a same building and registered, and sat and waited to be seen.

 

After about 40 minutes I was called through.  I explained everything to the doctor, about how I was feeling and my medical history, and got "that" look again.  He decided that he needed to take some blood and arranged for a nurse to take this.

 

After waiting on a bed for about an hour, I asked what was happening about the x-ray.  The nurse went off and came back a few minutes later and took me through to another to another department.  If she hadn't taken me there I would have thought that it was actually closed, as there were no lights on and no staff seemed to be about.  Anyway, the nurse told me to wait there and someone would come and do my x-ray.

 

I was just getting to the point where I thought I had been forgotten, when I was called in to have the x-ray.  From there I was sent back to A&E to wait for the x-ray pictures to be sent through to the doctors.

 

Well I ended up sitting round for most of the afternoon, and eventually about 5.00 pm a doctor came and saw me and said that they couldn't find anything wrong and that I could go home.  At this point I was to tired and hungry to worry that I hadn't got any antibiotics, and was just glad to go home.

 

Once home, Mum cooked dinner, and I had just finished this and the phone rang. 

 

It was one of the nurses from A&E, asking me to come back urgently.  I asked if it was really necessary as I had spent most of the day there and I was really worn out.  He insisted that it was important, as results of my blood test needed to be checked again, and I really should not have been allowed home.

 

So about 7.30 pm I got back in my car and drove back to the hospital.  I was ushered straight through reception, and seen straightaway by the nurse who had called.  He explained that he needed to re-do the blood tests, and proceeded to take some blood.

 

There wasn't a bed available so I had to wait on a chair, in a corridor, near where the access for patients brought in by ambulance would come in.  So it was a nice busy area with doors being opened and closed to the outside, which made it nice and draughty.

 

About 10.00 pm, I was still waiting for the results of the blood test, and Mum who had come up to the hospital with me, was starting to drop off.  I suggested that she went off home, before it got to late, as she could get a bus right outside the hospital to near my house.

 

At about 11.30 pm, I finally managed to catch the nurse again, and ask him what was happening.  I pointed out that sitting in a draughty corridor was not doing anything for my health, and that I would be better off at home in my own bed.  He went to check what was happening with the blood results.

 

About 5 minutes later he came back, very apologetically, and advised that the blood he had taken earlier didn't appear to have been received by the lab, and he needed to do the tests again.  He quickly took some more blood, and promised to get the test results urgently, but advised that if the results weren't right he would have to admit me.

 

So about an hour later, the nurse comes to see me and says that the blood results are not good, and that I am to be admitted.  However at that time of night there wasn't a bed available on a ward, so I would have to stay in A&E, but as they didn't have a bed, I would have to stay on a trolley, but that this would be in a cubicle where I wouldn't be disturbed.

 

The blood tests that they had been doing was to measure the amount of Troponin, in the blood.  Troponin is a complex of three regulatory proteins (troponin C, troponin I and troponin T) that is integral to muscle contraction in skeletal and cardiac muscle, but not smooth muscle.

 

Certain subtypes of Troponin (cardiac troponin I and T) are very sensitive and specific indicators of damage to the heart muscle. They are measured in the blood to differentiate between unstable angina and myocardial infarction (heart attack) in patients.  A patient who had suffered from a heart attack would have an area of damaged heart muscle and so would have elevated cardiac troponin levels in the blood.

 

The specific protein the blood tests were looking for was Troponin T, or TropT, and this was elevated in my blood, indicating, to the doctors, that I had suffered a heart attack.

 

After a not very comfortable night on the trolley, I was transferred to a general admissions ward the next morning.  Nothing really happened all day as they were waiting to get me onto the cardiac ward.

 

Eventually, I was transferred to the cardiac ward late on the Monday afternoon, and hooked up to all sorts of monitors.  Although I was allowed to get out of bed, to sit in a chair, I wasn't allowed to walk around.

 

I was seen by one of the junior doctors, and went through all of my medical history.  When I told her I had DM and IBM, she told me that it wasn't possible to have these two conditions together, and certainly not at my age.  However, it became clear to me from talking to her that she really didn't know much about the conditions.

 

I explained that I thought I just had a chest infection, and had never had any pain in my chest to suggest that I had, had a heart attack.  However, my TropT was so elevated that she could not see that it was possible that I had anything else wrong, than a heart attack.

 

For the next two weeks, I stayed in hospital, having various tests on my heart, but nothing could be found, beyond this elevated protein to indicate that I might have had a heart attack.  I had some good discussions with the doctor about my DM and IBM, and I tried my best to educate her on these conditions and how they actually affect people, rather than what she had read in her text books.  I did meet her again, during an admission in 2008, and this time she was much more willing to accept that I could have DM and IBM, as she admitted that following our discussions she had gone away to find out more about them.

 

Finally, they did another Angiogram, just to check that there was no damage to the coronary arteries.  The two surgeons who performed this procedure were very good at explaining what they were doing, and I was able to sit up, a bit, and actually watch the x-ray monitor to see the tube being pushed up into the heart.

 

As they push the tube up, it causes a funny sensation in your chest.  As it gets pushed up, this increases the pressure in the heart, and can cause the heart to feel constricted.  The immediate reaction is, "Oh my god, I'm having a heart attack" but in fact its nothing to worry about.  It does though make you feel flushed and very warm, and rather awkwardly, you can feel an overwhelming urge to have a wet yourself!

 

At one point when they were pushing the tube up towards the coronary artery, one of the surgeons said to the other, who was controlling the tube, that he had was going the wrong way.  This raised two questions.  Firstly, given the mass of blood vessels on the x-ray monitor, how did he know which was the right way.  And secondly, and more worryingly, if he was going the wrong way, what part of the body was he going to end up in?

 

Anyway, the Angiogram, was fine and they found no problems.

 

Before being discharged, the ward sister came and spoke to me, and to confirm that I had suffered a heart attack.  She told me all the does and don'ts that I should stick to, and that I would not be able to drive for the next 6 months.  She also gave me information on dietary changes, that were recommended, and suggested that more exercise might help avoid a recurrence.  I told her that despite everything she had said, I could not see that I had had a heart attack, but that two weeks rest in hospital had enabled me to get over the chest infection I thought I had.

 

After I got home, I had a rest, and during this the phone rang, and it was the ward sister, I had spoken to earlier in the day.  She said that she had asked the doctors to look at my file and results again, and following this they had downgraded my condition from a heart attack to a cardiac event.  On the basis of this, rather than having to take 6 to 8 weeks off work, she now said I should be fine to return to work in 2 weeks.  The other guidelines should still be followed, but I would not have to stop driving.

 

Anyway, life got back to normal.  I returned to work, and many of my colleagues commented on how well I had recovered from a heart attack, and how well I was looking.  And I have to admit that I did feel very much better than I had for a long time, although I still couldn't believe that I had had a heart attack.

 

Fast forward now to 2009, and I am seeing one of the doctors at the National Hospital for Neurology and Neurosurgery, in Queens Square, London. 

 

As is normal the first time you see a new doctor, he was taking a full medical history and when I told him about this episode, he smiled.  He went on to say that in all probability I was right that I had not had a heart attack, or any sort of heart problem. 

 

He went on to explain that it is quite often the case that people with muscular conditions such as IBM, have elevated levels of TropT in there blood.  If the doctors had understood anything about IBM then they would have known this.

 

So if you suffer with IBM and a doctor diagnoses a heart attack after checking your TropT levels, be aware that it might not be as straight forward as it seems.  If you don't think you've had a heart attack, and in my case I had never had any chest pain at all, and was sure it was a chest infection, then make sure that the doctor has taken your IBM into account.  It might save you from spending time in hospital, and a whole load of unnecessary procedures and tests.