Wednesday, January 20, 2010

Its been a while

opps So I just relised that I have not updated in like 9 days.
Its been busy and very tiring.

I have mostly been spending the night on the ward, going to physio/gym first thing in the morning (which is a killer on its own as I have to be up, showered, dressed, medicated and had my breakfast all by 9:30 and I really am not a morning person) Then I have been mostly going home after dinner which is when people have coming out to the house for assessments such as fitting a panic alarm and such. And when the afternoon is free, generally being dragged out shopping 'to give me some fresh air'. Back to the ward about 7 and trying to fit in some wii when i feel upto it as more physio.

Then Friday was my birthday. The nurses woke me up mega early to sing to me and give me a present. They bought me some lovely pjs with like a hooded top to go over them and slipper socks. Was really nice of them. Then my parents took me out at dinner time. We went to a new buffet place in town called red hot, it was really yummy and I cant wait to go back again! Then when I got home my sister and her kids visited and then after that my friend. So it was a very long day and I was absolutely shattered. So much so that I felt really rough and flu like all day saturday and most of sunday.

I have spent the last couple of nights drafting up a email to one of the surgeons who was on the news last week after successfully managing a tracheal transplant. One of these would turn my life around! It would get rid of the trach, it would sort my voice and upper airway out and hopefully fix my breathing. And with it being your own tissue should mean that I would get less crap and junk on my chest so limit the meds/treatments/cleaning and infections from it. But it is a very long way off from becoming a standard procedure. My current surgeon says that it wont happen in his lifetime as a surgeon so where talking 20+ years. So I thought by emailing this guy, I might just get my name in early hehe. Although im not getting any hopes up and doubt that I will even get a reply off him. But it was worth an email.

Today I had surgery again. They basically did the same op that they performed on the 23 December. He says  what he has done will not last and it will collapse again pretty soon and to be honest I think it already has. Apparently he removed a lot of thick fibrous tissue, more than he was expecting too. But he dosnt know what to do next. He seems to want to get my trachy out and restore my airway, but my other surgeon who has been trying all kinds of different things, wants to restore my voice and get me home to recover. I dont know who to put my faith in.

Todays surgeon claims he knows someone with an intrest in tracheal reconstruction and is going to talk to him and see where to go to next, but my other surgeon said there is too much damage for reconstruction. urgh I just feel like I am going around in circles and not getting very far. Maybe I will just let them fight it out.

Or at least give it a few days as coming around from todays surgery was very very off putting. I was in so much pain I was practically crying (If you know me you will know this is rare) The pain meds they were giving me where making me want to throw up and i was shivering and shaking so violently they asked me if I had an history of epilepsy. Overal not nice. Then I spent the rest of the afternoon sleeping, even refussing drinks right after surgery, which again is odd for me as I usually drink gallows, especially when I first come around.

So maybe more sleep pretty soon I think. And review when im feeling a little bit better after today.


  1. hi there iv just recently started reading your blog. its sad to see your having such a rough time. hope all is well.

  2. I can't wait to go to red hot with ya!