The Doctors daily ward rounds in a hospital are a big anticipated event for any patient, but when you don’t know what is wrong with you and you are desperate for information and just want to get better and go home, they take on another level of focus. They normally take place mid-morning after they have arrived on your ward and had a team meeting with the nurses. If you are situated close to the nurse’s stand, you might attempt to eavesdrop on the team meeting as every nugget of information is vital. I listened so hard every day I nearly made my ears bleed! When your Doctor arrives mid-afternoon, after he has already seen you in the morning, approaches your hospital bed smiling nervously, draws the curtains around, sits next to you on the bed, rather than standing at the end of the bed like he normally does, you know instinctively it is not good news.
At this point, I had already been a patient for 10 days after being admitted after several weeks of severe breathlessness and partial heart block (that came completely out of the blue with no warning signals) that had turned within a couple of days of admittance into complete heart block. I was having near fainting episodes multiple times a day when my heart would stop for 7 seconds at a time. I had listened to the Doctor’s explaining that I would probably need a pacemaker, whatever the eventual diagnosis, which I was completely rebelling against. Excuse me! I am 50 years old, not 85! I was FRANGRY – frightened and angry!
I was in complete denial and desperate to get back to work. I behaved like a passive-aggressive maniac – or I would have done if I wasn’t so busy fainting! I was convinced that the breathlessness was caused by my asthma and I just needed steroids to cure it. I had been rushed through every test possible – ECGs, Angiogram, endless blood tests, Cardiac MRI, CT scans, Ultrasound, Echo – for which I was very grateful. They had already ruled out Lyme disease, thyroid issues and a virus. The results of these tests were all pointing towards the diagnosis that was about to be delivered.
Joanna, from the tests we have done we believe you have Cardiac Sarcoidosis which is very rare. I am really sorry, I know it’s a lot to take in. You haven’t done anything to cause it. We are 70% sure it is in your heart and we need to do so some tests on your lungs too. Do you have any questions?’
In my head I say this – ‘Err what?! What did you just say – Scardi what? What the bloody hell is that! Yes, I will have questions!! I just don’t know what they are yet because I have never heard of whatever it is you just told me and I don’t know what to ask. I am understanding it is serious by the fact you are looking sad, telling me you are very sorry, telling me you know it’s a lot to take in and are patting my arm’. What I actually say after I burst into tears, is apologise for crying (my inner people pleaser just cannot be quiet!) and say I think I have some questions but I’m not sure what they are yet, although could he clarify that I have a heart and lung disease (yes we are pretty sure that is the diagnosis but it will be confirmed with a PET scan). Being a man, he is by now looking very uncomfortable at the crying so, not wanting to frighten him further with big, girly ugly tears, I thank him (!!) and ask him to leave the curtains drawn so I can continue ugly crying and google this Scardi bloody thing.
Google – Sarcoidosis is a rare condition that causes small patches of red and swollen tissue, called granulomas, to develop in the organs of the body. People also ask ‘What is the life expectancy of a person with Sarcoidosis’. Answer – The average clinical course among these 22 patients was 10 years from the onset of the disease. It is also most common in African Americans and Scandinavians.
Well, the Doctors obviously don’t know what they are talking about as I am not an African American or Scandinavian so I cannot have that – I just think I have a chest infection. Yes, they have got this totally wrong. How can I have something I haven’t heard of? No, I definitely haven’t got this. Also I am not ready to die in 10 years! Now I feel quite definite that they have got this very wrong and need to double my insistence on steroids for this chest infection and get the hell out of here. After of course my pesky heart stops wildly fluctuating which is causing me to faint several times a day. Right after that has been sorted, I am out of here!