And the results are in!


20 months, 12 Consultants, 2 professors, a GP and numerous emergency doctors and finally we have a diagnosis.....but more about that later.

The week started off so nice and quiet, my heart rate was still slow after my trip to A&E last week but not frighteningly so, generally I was taking it easy. Until Thursday that is, the day of my cardiology appointment, when my heart rate dropped. Plummeted might be a better description. Unfortunately I was in the house on my own as my husband was at work. I was positively determine to get to my cardiology appointment, almost to the point of stupidity. However after I collapsed for the second time I decided to admit defeat and call an ambulance. But not before I had called my cardiologist secretary to apologise for not being able to make my appointment.

The ambulance arrived and whisked me off to A&E, by the time we got there my heart rhythm was irregular, my blood pressure had a systolic of under 80 and my heart rate was bradycardic at 30bpm. Its safe to say I wasn’t very well. I was given atropine twice to try and increase my heart rate, which managed to get it up above 40. I was moved to the cardiac care unit where everyone kept a very close eye on me. The irony is that the next morning the consultant came to do his rounds and sure enough it was my lovely cardiologist who I was supposed to have seen the day before. So we have stopped some medication and I need to do a 24hr ecg and then I will see him again next Thursday. Hopefully he can sort this out. The only way I describe what its like to be bradycardic is like the most drunk you have ever been, its really horrible. I went home the next day with my heart rate at around 45 and even now its still around 50, it should be about 70.

However that is not the big news of the week. The big news is that after 20 months of being really ill, I finally have a diagnosis. I have Ehlers Danlos Syndrome. Thankfully it is not the Vascular EDS, which has a life expectancy of 46. I think it is going to take some time for the diagnosis to sink and for me to come to terms with what that actually means for me and my future. I have some clear next steps, for the first time in forever.

  • The bradycardia needs to be sorted out

  • I need to go back to the specialist unit in London so they can determine a specific prognosis and a treatment plan

  • I need to have a brain scan to determine if I have a chiari malformation

  • I need to have a scan of my spine to determine if I have scoliosis

It’s a plan!!!! My life has been in limbo for 20 months and now we can finally start moving forward. I don’t know what the future has in store, EDS is progressive, but at least we know which road we are starting the journey on. There is no cure for EDS so I know my life is never going to go back to what it was, however I can start to move forward and plan what my life will look like in the future but all of that is going to take me some time to get my head around.

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