news

I have had a fairly productive day. 

The sun being out, always puts everyone in a better mood.

I have started tidying my room, and by that I mean you can actully see my desk, now that is rare. I also have a big list of custom cards that I am slowly working my way through. By big list, I mean about 10 hehe. But its all progress and my head is a wash with ideas for differnt things. This summer, I think that i might have a go at setting up my own etsy shop. So watch this space.

Chest clinic went ok the other day, though I had a big coughing fit in the waiting room and all the chest patients turned and glared as if to say, stay away. Dont blame them, I would do the same. ha. But, the doctor also heard me coughing and asked about the treatment I have had for my cough. He wants to take me in and dose me up with some more IVs, to try and kick this cough's butt. My arms are still bruised from the last lot of IVs two weeks ago, but I have agreed to give them another try. I was meant to go in today, but they have no spare beds yet, so they are going to phone me when they do have them. Whilst I am in, he also wants to put me on some nebulised antibiotics as a possible long term solution to managing some of these infections. Boo at more time on the nebuliser, but yay at the prospect of keeping my chest under control. 

Today, I was talking, well emailing a lady from the national transplant service. I had asked a while back if there was anything I could do this year to help promote national transplant week. Last year I had an article in the local newspaper. After some discussion, she wants to use my story on their website, complete with photo. So there is talk in the not to distant future of having a professional photo done to go with it. eek exciting. 

So good things are happening all around. 

I also have a few new readers. *waves* Welcome. I love getting comments on my blog. 

Did I mention that I have my visa appointment? Well thats something else exciting. 

Oh so much changing. 

I like change. 

I like feeling like this.

Now what.

What do you do when the top doc in your area tells you that have no clue what to do?
It seems to be a reoccuring theme recently. Sorry if I sound bitter, but check the blog title.

Today was chest clinic. As I mentioned in my last entry, I am feeling rather crap, so I had hoped for a suggestion or anything that might make life easier. What I got was a puzzled doc. The bug is in my chest again, not sure if it ever went. All my tests are normal, so they have no idea why it is there, so they cant prevent it. The IVs didnt help, nothing is helping, and as it is rare to get it in your chest, they have no idea what to do with it. He dosnt think it is causing any huge problems, but generally he dosnt know. I feel awful, the pain is annoying and I am exhausted. We are going to try a long term antibiotic, but that is more to keep on top of any new infections. Other than that, go with it and see him after christmas.

He basically said, while your throat is a mess and your body is getting messed with so much in surgery so often, you wont be normal, you will continue to feel crap and there is very little we can do chest wise, till the throat is sorted. If you get further infections, we can treat them, but other than that, we need to try not to wear out the anti biotics.

Its disheartening. To have the hope, that yes soon you may feel better, and then a couple of weeks later be told, well you might, one day, maybe. Yes things are not terrible at the moment with my life. But I want more than to try living between crisis.

I over did things yesterday and so I am over tired today, so I slept all afternoon.
As a result, I have been moaned at so much today and I am losing my grip on staying cool.I am holding onto happy, but I am slowly slipping.

I know I am under the best docs I can be. There is nothing I can do at this point. Time to dose up on painkillers and go sleep.