Today out of anxiety more than anything I called one of the co-ordinators. I didn't want them to think I was pestering, my appointment was only on Monday but the amount of concern my consultant showed at the appointment has been playing on my mind. Well not really the concern but the sense of urgency and the 'oh dear although this is what I've been fighting for it is really happening now and I don't know what to do about it' feeling. Just a feeling that I want to help myself as much as I possibly can and if that means being a pest then so be it. The co-ordinator was extremely understanding and put my mind at rest. They had received a fax from my consultant and he has ordered an urgent cardiac catheter, he mentioned this would probably be needed. Now we wait for Cardiology to free up a slot when they do I go onto the transplant unit and complete the rest of the tests. As the cardiac catheter has been marked as urgent and the request has already been sent it shouldn't be more than a week. Things are moving forward, that, to me, is rather novel and something I'm not that used to.
Anyway although the co-ordinator had received the fax by the sounds of it, it was a brief one because she didn't know anything about me and began asking questions, most of which I struggled to answer. This led me to think back to some of the turning points I remember about my lung disease. Some of the main things that stick in your mind as sort of flash backs. Really not major events in reflection but just situations that never leave you.
She asked what my diagnosis was and I said I didn't have one, I didn't compare what I had to another more common lung disease which I and people around me have fallen into the habbit of doing. But then I thought how must that have sounded? I'm 21 in end stage respiratory failure due to some random lung disease I developed age 14 that I've had tests for for the last 6yrs and some of the top respiratory teams in the UK cannot even fully explain the disease or what it is, why I developed it and why its suddenly picked up pace and become hell bent at taking my life. For the first time in along time I allowed myself to relate to what my doctors or the doctors facing me must feel, Frustrated. Frustration has never really come to the front of my mind like it did today. Its always been there but never really a major feeling most of the time I've had to much other stuff going on to actually take some time out and try and assess what I'm actually feeling or even care about what they, my doctors might actually be feeling. I've always thought when it comes to my doctors 'how dare they feel frustrated when from what I'm feeling frustration would be an improvement'. And for some reason that just hit me today, that what I've learned might not actually be right, that contrary to what I might actually believe my medical teams aren't the enemy...
Sending some smiles!
4 weeks ago