On Wednesday 8th January 2020, despite terrible fatigue I made my way to Wolverhampton to catch up with my surgeon Mr Garnham. I had fortunately been squeezed into this clinic and was only given the appointment on Monday 6th January, so it gave me little time to sort out trains. I made 7th a 'rest day', but was truly fatigued. However, this trip to Wolverhampton was the furthest I had made since discharge from hospital back at the end of November. Just walking to my local tube and going to Euston seemed an effort before the long train journey ahead.
Luckily there seemed to be no other patients around when I arrived in hospital, so I was seen more or less straight away. I explained the events of the week before to Mr Garnham, and the fact that the radiating arm, little and ring finger pain had returned to the left arm, whilst the right arm (most recently operated on), was fine. He palpated my chest and said that my pec minor was 'as tight as violin string'. He said that I must rest this arm, although he didn't want it for too long in a sling. He said that initially to rest it, but that the next step would be to try botox in the muscle. I explained that unfortunately I couldn't afford to do this in Bristol. Mr G said that there was a radiologist who might be able to do it in Wolverhampton, but that they had't really got someone up to speed here - but they were attempting to send them on training. He said that if botox failed to help that we might be looking at surgery further down the line to remove my pec minor on the left side. He requested that I had a chest x-ray that day, which I had to go to A&E for as I was too late for their normal radiology department as this closed at 5pm. Thankfully I had enough to get this x-ray done before then waiting for my return train home. Mr G said to ring his secretary on Monday, and that he wanted to see me again in 8 weeks time. He didn't help much with explaining why my chest is so tight and full of pressure and weight on it.
This is my account of the appointment and the A&E event: https://www.youtube.com/watch?v=cA7VtoLgadc
I had tried to get the report of my A&E discharge summary as it had never reached me. Unfortunately it arrived the next day with a suspected diagnosis of 'Acute Coronary Syndrome' - ACS. This scared me a lot especially as my dad died of an MI aged 40. Some of treatments made sense - e.g. asprin, or blood thinning drugs as my blood is presently 'thick and clotty' with a high D-Dimer score still - apparently due to surgery. However the treatments that they outlined in the letter did not match what happened to me in the department, so I am having to verify with the doctor who signed the letter to make sure if it is not a mistake. If it isn't then surely I need a follow-up appointment with a cardiologist. In addition, I've seen abnormal ECG notes in my medical notes - I happened to have access to them and took a picture - something about an' anterior infarct' was mentioned on 4-12-19. If so, then this will surely need investigating. I am waiting for clarfication from the hospital. If I possibly have ACS then I will need to inform Mr Garnham asap. Otherwise my life remains continued in pain and fatigue and now I am not allowed to play my recorder either! Let's see if rest helps. Typing on the left hand (last 2 fingers) is not feeling quite right either. I am really wondering how great an idea all this surgery was. In his last email, Rob said it was quite probably because of my EDS if there is failure. Surprise, surprise.
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