At some point during the first few months I decide to try and retrieve my medical records from Australia. Perhaps they will be of some use in relation to my current circumstances or at least provide some background for Dr Busy to work with.
In 1995 I had surgery to remove part of my left lung but more about that in another post. I manage to make contact with the right department back home and miraculously my records are accessed from a storage center and copied. I pay a small fee and a short time later they are sent to me here in the USA.
For anyone who has had to deal with bureaucracy in Australia you will realize immediately what a small miracle this really is. To get something from 15 years earlier copied and mailed to you overseas, let alone found in the first place, goes beyond any realistic expectation. I have Australian friends who will read this and I guarantee that a breathless “Bull....Shit” will escape from their lips...
At my next appointment I hand over the thick file to Dr Busy to research. He seems pleasantly surprised that I have been able to pull this off.... I’m guessing doctors are no strangers to bureaucracy either. He skims over a few pages, promises to get back to me, and then scurries off to whatever the hell is so important as usual..... perhaps there’s donuts for morning tea!
On my next visit Dr Busy says he found one tiny hand written entry in my hospital file that he wants to follow up with. I get an extra blood draw as my prize for this discovery and he, once again, dashes off to save the world.
This tiny piece of information turns out to be a vital cog in the wheel of mystery that has been my condition so far. The extra blood draw was for a specific test for Alpha-1 Antitrypsin Deficiency or A1AD. Ever heard of it? Me neither...... but it turns out I have had it my whole life. It’s genetic so one of my parents unwittingly passed it on to me.
I am classified as an MZ. That means I do not have full blown Alpha-1 but it does mean that I am a carrier and that one of my parents is also. In medical terms, Alpha-1 is a fairly new discovery (In 1963 by Carl-Bertil Laurell at the University Of Lund, Sweden) so the likelihood of them being tested for any reason still remains very low. Neither have a bad lung or liver history so there has never been a reason to test for it.
So now I know I have this thing.... what does that mean? I have a Pulmonary Function Test and although my numbers are lower than average they are still well above needing to have the specific treatment (infusion therapy) so for now it’s just a part of who I am. Dr Busy is not showing any signs of extra concern but seems very pleased that his hunch was right.
I’m still coughing though....
If you are interested in finding more about Alpha-1 please check out the following links;
National Institute of Health (NIH)
