Thursday, August 23, 2012


It has been one of those weeks where I seem to have been busy, yet done nothing at the same time.

I have had a couple of clinic appointments. My thoracic surgeon, complete with the usual tests including chest xray. I was quite pleased actually, that my lungs were not looking any worse than normal. The way I have been feeling, I was expecting them to be a little more hazy.

That clinic is really just to keep track of things encase of emergency. Other than that, the surgeon is happy keeping me under his team, though there is little he can do. We talked about the last 6 months, complications and the future.

My other clinic was transplant clinic, which again was fine. Saw a doctor that I have not seen before. He seemed nice enough. Everything is fine with my liver, though he dosnt particularly like all the bugs breading in my lungs. There are currently 3 there, but he thinks I am pretty much colonized with pseudomonas and staphylococcus aureus. Which basically means, they now live happily in my lungs, without causing me many symptoms. The problem with that though, is that they are pretty much impossible to get rid of and can still be passed to others. That makes me risky to certain at risk people, like other transplant patients. But alas that is one I shall tackle at another time.

So overall, its just riding this whole throat thing out. Its amazing how many people, even doctors who are up to date with new changes, ask if my current transplant meds will cover me, should I ever get a tracheal transplant. The answer is no, because the tracheal transplant does not need the life time drugs as the body ends up recognising the trachea as your own.

I have been using my scooter as well, I wasnt sure if I would. But it makes such a difference. I had forgotten what it is like to enjoy being out. Usually, I limit how often I leave the house as it is so exhausting. And when I am out, I am often to tired with breathing to enjoy the time. But since using the scooter, I can look at stuff, I can enjoy going around a shop, I like being out of the house. I never realised how much effort I was putting into doing simple things like shopping, until I suddenly wasnt putting it in. Yes, I am still a little embarrassed to be out on it, but, its getting easier, and I look forward to being out now.

I even went out to Alton Towers yesterday. I am worn out today and have had a pj day, but I managed yesterday and I had fun. I got around all of the park, that I otherwise would never have managed.


  1. Good for you Kim, getting out and about with the scooter, that's great news. Sod what others think, they have no idea why you're using that scooter . . . you're making the most of what you've got Kim and that is a positive and brave thing to do.
    A tracheal transplsnt would be amazing, I didn't even know such a thing exsisted. Are you on a list for one? and is there a lot of people needing them? I hope one comes your way soon if that's what would improve life for you.
    Meantime, you keep on scooting Kim, if it means you can enjoy the shops again, and Alton Towers it can only be a good thing. As always, you're a true inspiration.
    Love and prayers x

  2. Ah sorry, I forgot to reply here.
    Tracheal transplants are a brand new thing, kinda experimental. I am one of the top on the list for one, but it is going to be a minimum of 2 years before they become a legal procedure in the UK.