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This is my first post so i'll write a bit about the blog and what it's about. It's been a challenge to get this up and running as I have been so unwell throughout the process of setting it up. It has been a really difficult winter for me and others like me - as well as the NHS who have been struggling to look after everybody.
This is a story about breathing. Most people do it without thinking, you breathe, your heart beats, your blood pumps round and you take all that for granted. With COPD you are constantly aware of your breathing, or more often than not your breathlessness, and that becomes something that defines everything you do. As my COPD has progressively worsened and is now 'very severe' (a slightly more palatable description than 'end stage' as it's also sometimes called), I am now being considered for a lung transplant.
My blog will be centred around the story of my referral for a lung transplant and the process that I go through. I will be going to Papworth on 9th April for a pre-assessment.
But I don't want the blog to be just about the transplant as there's more to my life than that (although sometimes it doesn't feel like that!), so I've designed the blog (or Rob Moore has designed it for me) to have some visual interest to reflect things that I like to live with and look at amongst others.
I want the blog to be interesting to a wider audience than just those with experience of lung disease. Recently I have been confined to the house for over 6 weeks as I haven't had the breath to get up and out so I have had some time to look around on the internet for other blogs. There are not many and I only found one that I wanted to read : bitz-and-bobz.co.uk by Derek Cummings.
I like Derek's blog as he writes (making it seem easy) in a straightforward way about his experiences of living with COPD. He always sounds very pragmatic about his situation and about what he is able to do and enjoys doing, although does let us know that he has some difficult times too. His blog also has useful information about COPD and he has lots of articles on COPD.net which is good for education on all aspects of COPD.
There are a few Facebook support groups for those living with COPD so I joined one and found it reassuring in a way: you're not alone, there are others suffering too, and when you're housebound can be a way of communicating how you're feeling, but also scary as there are so many others who are even worse off than you are.
Not everyone has the hope of a transplant and some are confined to their homes permanently. The group has people from further afield including NZ and the US. There are an estimated 1.2 million people diagnosed in UK and 11 million people diagnosed with COPD in the US. There are 1336 in our facebook group.
I'll be writing about being diagnosed with COPD and how I came to be referred for a transplant as well as my experiences of becoming disabled - and increasingly so- and what that is like; to be an able bodied, independent, strong-willed and strong-minded individual who has to gradually get used to a narrowing of options.
But I am determined that this is not going to be a 'misery' blog. It might well help me to communicate some of my anxieties about having a transplant (crudely, in my mind , being sawn open and having a new pair of lungs stitched back in) and sometimes life with COPD can feel utterly miserable and I will share some of that, but I hope ultimately my blog will also be about offsetting that negativity.
I'll be posting a weekly blog giving updates on my transplant as I go through the assessment and beyond. Of course I may not get through the pre-assessment stage; there is a complex assessment of suitability to go through so I have to be prepared for not being able to go forward. I'll also be posting on anything else in my week that I think is worth writing (and reading) about.