So this week was Valentines day, all love, romance and matters of the heart. Well I am afraid I am a cynic and think that valentines day is a Hallmark holiday, however spending the night my local A&Es Resus was really taking things to extreme, even for me. Yet again I had a series of angina attacks during the day that culminated in one massive one that couldn’t be controlled by GTN at home. My husband had to call an ambulance and I was promptly taken to A&E and straight into Resus. Whilst there my blood pressure dropped dangerously low to the region of 70/30 which, I have to say really makes you feel awful and not really conscious. Thankfully the wonderful staff at hospital managed to get everything stabilised over the next several hours and I was allowed back home, I may be pushing it with the word allowed. The Doctor wanted to keep me in HDU (high dependency unit) however once things had stabilised I didn’t feel right taking up a bed like that so begged to go home, promising to come back at the slightest twinge. I spent the next couple of days feeling like I had been kicked in the chest by a horse.
This week we have also been for a check up with my orthopaedic consultant who operated on my hip, which is all ok. I’ve also seen my cardiologist, I think we have come to the conclusion that at the moment, any benefit of doing the provocation angiogram is massively outweighed by the risk that is involved for me. I have had a slight tweak to my medication and we are going to wait until, hopefully we have the answer on the underlying condition.
Talking of the underlying condition I am having a fight with my health insurance company about the genetic tests that my consultant wants to carry out. The insurance generally doesn’t pay for genetic testing as they consider it to be screening, however my consultant cant diagnose without the test. He is almost certain I have a connective tissue disorder and he thinks it is Ehlers Danlos. However he believes it is not the Hypermobility type, which can be severely disabling but is considered to be the least serious. So it is really important that we find out which type it is, especially as some can be what they call life limiting, with an average life expectancy of 46, particularly the types with vascular involvement. Not to mention for my sanity as worrying which type it is and if my time is limited will drive me nuts, I would far rather know what’s going on so that I can deal with it.
As you no doubt will have seen from the pictures on the from the heart 999 facebook page, my arm is now braced to stop the elbow dislocating and irritating the ulnar nerve. It seems to be helping which is good and will hopefully prolong the time until I have to have surgery on it. I am also finding that typing and knitting is starting to really hurt my fingers. I am fast falling apart. Though last night my husband and I actually went out with friends which was lovely and so nice to feel ‘normal’.