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. I was having a rare old time when the shit hit the fan.
You are reading a Blog written by a woman who has LAM.
OK here it is in its unshortened glory. lymphangioleiomyomatosis
No I can’t pronounce it either.
I don’t want to be health bore and go on and on about it but in a 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.
With only 200 women in the UK with this condition – and a few of them being broadcasters – there has to be a connection and only by writing and talking about it will we potentially find out what it is.
Might as well be hung for a sheep as a LAM.
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.
My Diagnosis By Alison Craig
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. 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.
In between times I continued working on radio and TV, and enjoying life.
Then 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. This time, the doctors decided to ‘stick up’ my lung up to prevent it collapsing again. ‘Stick up’ my lung was slang for a pleurodesis. I didn’t really think about it, it was just what had to be done. Of course, the reality of the procedure is somewhat gruelling, and not something that bears too much thought. 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.
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. My surgeon told me I had LAM.
LAM? What on earth is that?
My first question was, ‘Is it a precursor to cancer?’ 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.
About a week later, my other lung collapsed and whilst still weak and I was in for another pleurodesis. Double whammy. I 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 and 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’s tempting, but don’t. 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. I stayed in that place in information shutdown until I met Professor Simon Johnson at Nottingham University Hospital.
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’s 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 – these people will know very little if anything about LAM so don’t listen to any of them, just listen to the man who knows and the great team at LAM Action. 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.
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.
So 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. It would have helped me immensely to have been handed a sheet on day one which gave the following information:
- What is LAM in a nutshell.
- Only women get it.
- It is believed it maybe oesterogen-based.
- There is a very wide spectrum of this disease from so mild a patient may never know she has it, to a more severe version.
- Do not search on-line. (I know I say that a lot, but it is so true. If you were to read the information on the back of a bottle of Night Nurse, you would become hysterical and take it to the local police station rather than take it for a bad cold.)
- Cherry-pick the information you need and do not immerse yourself in the minutiae – Professor Simon Johnson is there for that. Let him do the medical stuff, you concentrate on looking forward and getting on with life. I do not want you to lose two stone – an effective but unrecommended diet plan .
Until recently, doctors didn’t test for LAM so there may well be thousands of women who have it who had a collapsed lung or other symptoms and never knew what their underlying condition was.
I wish I didn’t know. The main battle with this for me is psychological as the very real questions of ‘why’ and ‘what happens now?’ cannot be answered. You may feel very alone; I did. It took me two years to get in touch with LAM Action in the UK and I encourage you, when you feel the time is right, to do so, too. They are great. I am trying to give you a shortcut to peace of mind about the future, though I still lie awake at night wondering was it my diet, pollution, chlorine, living in a city, living by the sea, the hair dye I use, sound studios I worked in for years, stress, bad posture… and so the list goes on until dawn, but whatever it is you and I have in common we have to try and find out what it is.
There are so few of us, the way to beat LAM once and for all is to share every piece of information. I share a lot on my blog (alisonsdiary.com) about life, the universe and everything. In fact, I am going to post this on there too – after all we are all in this together, and we women do LOVE to talk.
I hope one day you will be ready to tell your story and wish you well on your journey.