It's a start

Well it's a start. I am still trying to navigate around the site and feeling rather doff....I will figure it out eventually. I started this because I wanted to do something constructive and I felt this might be just the thing. I can be quite curious at times and since my diagnosis I have been more curious about "why?" "when?" and "what next?" perhaps all my searching and digging and scratching will be of good use to some one in a similar position? Perhaps my experience is no different to the next? I am sure though that whatever happens next will be unpredictable and interesting either way.

In 2008 I was diagnosed with a lung disease called Usual Interstitial Pneumonia, it is one of many Interstitial lung diseases, but is the one with the most morbid outcome. There is currently no known cure or treatment other than a lung transplant Ya Right?? Lung transplants can cost up to R1 mil without complications, the results are not great high rejection factors, skills and facilities are, as far as I know not great in this country. So I find myself surrounded by a raging fire storm armed with a dripping facecloth.

One thing I did realise though...it takes a Doctor less than a minute to give you the news and more than two years later I still can,t figure out what to do with it. I don't mean to have a go at the medical profession.....but I will, just a tad. It seems one of the subjects Doctors do not cover in their many years of study is some bedside manner and at least the ability to give it to you straight and point one in the right direction, after that it will be my problem I know but at least I will some direction down which passage to go. Almost all the information I have today comes from the Internet...no really...I shit you not. I happened to find a fantastic online forum called "Huff n Puff" naturally an American site. It was through this site that I could share and ask a ton of questions relating to my issues and without fail within a couple of hours I would have a caring and sincere response from patients or caregivers explaining exactly what to expect and what I was experiencing. So I am hoping I can do the same, but I have to carry on with my enquiries and this is the reason for the blog. I have questions and some answers and I want to share them and get some feedback, so if anyone is up to it please indulge me and share with me your insight and knowledge. Just one thing please...bring your sense of humour with.

This is my first entry and I will be looking for answers to and sharing topics such as, death and dying. When I was diagnosed the first thing I wanted to do was to really start living and not just exist, it's strange how I never gave that a thought.

I look forward to your company.