{"id":7349,"date":"2017-03-15T14:16:59","date_gmt":"2017-03-15T14:16:59","guid":{"rendered":"https:\/\/alisonsdiary.com\/?p=7349"},"modified":"2017-03-15T14:16:59","modified_gmt":"2017-03-15T14:16:59","slug":"confessions-of-a-broadcaster","status":"publish","type":"post","link":"https:\/\/alisonsdiary.com\/2017\/03\/confessions-of-a-broadcaster\/","title":{"rendered":"Confessions of a broadcaster."},"content":{"rendered":"

\"\"<\/a>So, “yer nae on the telly much anymore are you?” is a question I get asked a lot. No. I’m not. But as you know life has a habit of giving you a good boot in the bum when you least expect it. Which is exactly what happened to me.\u00a0I was having a rare old time when the shit hit the fan.<\/p>\n

You are reading a Blog written by a woman who has LAM.
\nWhat?<\/p>\n

OK here it is in its unshortened glory. lymphangioleiomyomatosis<\/a><\/p>\n

No I can’t pronounce it either.<\/p>\n

I don’t want to be health bore and go on and on about it but in \u00a0a nutshell my lungs collapsed and surgery was the only option. I did write about it for the LAMpost which is the place people with this rare and inexplicable lung disease can gather and find support. So I thought I would repost what I wrote about it here….if one person in a similar situation reads it and feels better – great. If one person reads it and can add any information or theory as to why it happens then it can only be good.<\/p>\n

With only 200 women in the UK with this condition – and a few of them being broadcasters – \u00a0there has to be a connection and only by writing and talking about it will we potentially find out what it is.<\/p>\n

Might as well be hung for a sheep as a LAM.<\/p>\n

Oh and I will be writing this blog about life and how I love being able to live it with my sausage dog, friends and fun as I am a cup runneth over kind of girl once I get this off my chest – pun intended.<\/p>\n

My Diagnosis By Alison Craig<\/p>\n

I had a collapsed lung five years ago then nothing. It was a fast and virtually pain-free fix. The doctors quickly reinflated my lung and off I went.\u00a0 I racked my brain as to why this had happened and came to the conclusion that it was because I had choked on a tangerine. After a few days of confusion, I rejoined life with gusto.<\/p>\n

In between times I continued working on radio and TV, and enjoying life.
\nThen out of the blue two years later, the same lung went down and the same procedure took place in the same hospital, but then a week after that, the lung came down a third time.\u00a0 This time, the doctors decided to \u2018stick up\u2019 my lung up to prevent it collapsing again. \u2018Stick up\u2019 my lung was slang for a pleurodesis. I didn\u2019t really think about it, it was just what had to be done.\u00a0\u00a0 Of course, the reality of the procedure is somewhat gruelling, and not something that bears too much thought.\u00a0 It involves keyhole surgery during which a camera is inserted to check the lung, repair any holes and to glue the lung to the inside of the chest cavity.<\/p>\n

During the process, a biopsy was done as a matter course, and then I was sent home to sleep in an upright position. It transpired this wasnt’ a problem as I felt like I would never sleep again, I was so scared. After ten days, I got a call to come back to the hospital; I suspected something was up – after all I had only just returned home and was still in recovery.\u00a0 My surgeon told me \u00a0I had LAM.<\/p>\n

LAM? What on earth is that?<\/p>\n

My first question was, \u2018Is it a precursor to cancer?\u2019 The dreaded C , the big C, the word we all dread hearing. No, I was informed, but we will want to do the same procedure on your other lung as the chances are it will also collapse when you have recovered from this op. Not what I wanted to hear when still in recovery from my first op, so I went home and concentrated on my recovery, deciding against reading anything about the condition until I was stronger.<\/p>\n

About a week later, my other lung collapsed and whilst still weak and I was in for another pleurodesis. Double whammy. \u00a0I stopped eating as I was a clenched ball of nerves. Honestly I had been the fittest healthier most robust person up to this point. Never a cold, A flu. A chest infection. A wheeze \u00a0and now I was unable to walk upstairs and my whole life was in the balance. Only when I began to get a little stronger did I look on-line for information about LAM. That was my first mistake, and my advice to anyone reading this is do not search on-line for information about LAM. Goodness knows it\u2019s tempting, but don\u2019t. The hysterics, the headline grabbers, the out-of-date information that whirls around in cyberspace will do you no good at all. I know. I searched on Googled and what I found threw me into a black hole of panic and despair. “A fatal lung condition” Stress caused me to lose over two stone.\u00a0 I stayed in that place in information shutdown until I met Professor Simon Johnson at Nottingham University Hospital.<\/p>\n

My second piece of advice is ask to be referred to Simon. The day I met him, my life began again. He has made it his life\u2019s work to study this rare condition and as a result he is the man you want to speak to. As there are so few cases in the UK there is a general ignorance about the condition. GPs, doctors, surgeons \u00a0– these people will know very little if anything about LAM so don\u2019t listen to any of them, just listen to the man who knows and the great team at LAM Action.\u00a0 Simon is the man who has the most up-to-date research and who is the voice of reason in a mire of soundbites and historical, hysterical nonsense.<\/p>\n

There is so little known about LAM, even in medical circles, that when a patient presents with a collapsed lung or other symptoms which could be related to LAM, she is generally patched up and sent home with no further support, they way I five years ago.
\nSo as I said, do not search for data on-line. Search engines do not update the information on treatment. Data can be out there for years misleading you, me and the next woman to be diagnosed.\u00a0 It would have helped me immensely to have been handed a sheet on day one which gave the following information:<\/p>\n