Monday, August 06, 2012


If things stay as they are right now, I think I could deal with that.
Today, pain has not been an issue. Slight ache this evening, but other than that, its like it was never there.
I have not taken a single pain killer in 24 hours.
Breathing is steady, I have not fully blocked up in the last day or so and on a good day, I can push 200 L/min on my peak flow.
I find I am still squeaking when I walk, but I am able to walk, which is great.
I have managed to save the funds to purchase a new nebuliser, cutting my treatment times drastically down and allowing my to travel once again, without having to make sure I am well enough to leave my equipment behind. I am just waiting on new stock with the company and then I should be able to get (hopfully within the next week or two)
Things right now, could be a hell of a lot worse.

At this stage, I know that there are no treatment options.
That any hospital admission would be to stop a decline rather than bring an improvement.
Right now, things are once again up to fate.
I am bidding my time until transplant becomes an option.


  1. Wow, you sound so calm and realistic. How do you manage to not panic, how do you stay happy? I have been trying to read much of your blog, but I haven't gotten through it all and I don't fully understand why you have tracheal stenosis, is that what you call it? It seems you were on a ventilator after your transplant, but were you on it for a long time, and if so, why would that be needed for a liver transplant? Please excuse my ignorance, I am just interested in how it all happened. I know a girl who had a lung transplant, and she had to be on a ventilator, but it was only for a few days, not long at all. I am not sure why it would be needed for a liver transplant, unless you were maybe in a coma or something? Anyways, good for you for staying on top of things and always staying so positive with a good sense of humour too. I hope you don't mind me asking questions.....

    1. It has taken a long time to get to the point where I feel happy. In the end, I have no control over parts of my life, like my health. All I can do, is hope for the best and I know that without having such a wonderful team working for me, to keep me well, things would be so much worse.
      I had my liver transplant due to being stabbed. The knife did a lot of damage and I was probably too far gone for a transplant really. But they took a risk for me. But being that ill when I got my transplant, plus the knife damage, resulted in a long time to heal. Espcially my lungs as the bottom of one was badly damage as well as my diagpram. So it was a long time till I could support my own breathing.
      Another factor in it was that my mind could not comprehend things and so I freaked out as soon as they lowered any sedation.

    2. Thanks for your reply. I am so sorry about what happened to you, that's terrible. I know you were with a very bad guy, I read some of that in your blog. I have had terrible boyfriends, really awful guys who were very abusive but they never harmed me physically, thank goodness. Partly because I am actually a lot bigger than one of those guys, he is a very skinny beanpole. Anyways, I do love your attitude, so positive. Of course, it would be hard to feel happy for a while, understandably. It must be hard to stay calm though, or at least it would be for me. I was seeing a counsellor who told me not to worry about things I cannot control, but that's the problem, I actually try to control the situation by worrying more even though worry cannot accomplish anything. It's hard to give up control over things, we feel we ought to have control even though we can't. It doesn't seem fair. That's so sad that you had to be on a ventilator for so long, resulting in tracheal stenosis. I don't know how common that is, but I guess it can happen if you are ventilated for too long...It is a very unfortunate outcome. I think you are very good at learning how to live with it though, you seem very practical and much more level-headed than I would be. So, good for you. I admire your attitude a lot.