Last time I blogged it was about Transplant Week and I believe I posted about Kirstie and her gift of a life saving double lung transplant. I am pleased to say that against the odds Kirstie pulled through and is now back at home at her dads with her hubby and recovering well. It's so amazing to see that in a time of such great sadness for one family, another family can feel such hope. All that because someone took them time to sign up to the organ donor register.
At the same time Tor is still waiting for her chance, 4 years of waiting and 8 false alarms. This breaks my heart and I just wish there was more that could be done. Her blog is truly inspirational and extremely touching. Tor talks openly about how she is acutely aware that her time is running out. And even talks about now having to discuss where and how she wants to die if the transplant doesn't come in time.
If only we could get more people to sign the register :(
On a much less important note.....
In my own life things have been a little up and down. I've been kept busy with 4-5 hospital appointments a week. My life seems to revolve around them these days. Despite having had to go to these for years now I do believe I seem to be developing a bit of a phobia to hospitals!! As stupid as it sounds, every time I go to an appointment I feel sick and filled with dread. My respiratory appointments have resulted in an increase in my medication, new nebulisers, new antibiotics, new physio treatments and a change to my oxygen at home. None of which are particularly the positive steps forward I had hoped for.
I've also been seeing the neurophysio for a couple of months now and my walking doesn't seem to have improved. I'm starting to thing I'll be like this for life now.
On a happier note I met a couple of people I've been chatting to on Twitter, last week. I was a little apprehensive, always remember 'ya mother always tells you not to meet people off the internet'. But I figured I'm a big girl now at 26 and it was broad daylight at a busy train station. Turns out it was great, I made a couple of new buddies and it was good to share experiences about respiratory illness and how different people deal with it. The girl, also names Gemma was amazingly upbeat despite her illness and lived a life pretty much exactly the same as any 'healthy' person her age - apart from the usual drug and physio regimes. Richard I think found it a little harder but was honest and had a real enthusiasm for his hobbies and interests which was refreshing to see. I hope we get to meet again as we had a good laugh.
At the same time Tor is still waiting for her chance, 4 years of waiting and 8 false alarms. This breaks my heart and I just wish there was more that could be done. Her blog is truly inspirational and extremely touching. Tor talks openly about how she is acutely aware that her time is running out. And even talks about now having to discuss where and how she wants to die if the transplant doesn't come in time.
If only we could get more people to sign the register :(
On a much less important note.....
In my own life things have been a little up and down. I've been kept busy with 4-5 hospital appointments a week. My life seems to revolve around them these days. Despite having had to go to these for years now I do believe I seem to be developing a bit of a phobia to hospitals!! As stupid as it sounds, every time I go to an appointment I feel sick and filled with dread. My respiratory appointments have resulted in an increase in my medication, new nebulisers, new antibiotics, new physio treatments and a change to my oxygen at home. None of which are particularly the positive steps forward I had hoped for.
I've also been seeing the neurophysio for a couple of months now and my walking doesn't seem to have improved. I'm starting to thing I'll be like this for life now.
On a happier note I met a couple of people I've been chatting to on Twitter, last week. I was a little apprehensive, always remember 'ya mother always tells you not to meet people off the internet'. But I figured I'm a big girl now at 26 and it was broad daylight at a busy train station. Turns out it was great, I made a couple of new buddies and it was good to share experiences about respiratory illness and how different people deal with it. The girl, also names Gemma was amazingly upbeat despite her illness and lived a life pretty much exactly the same as any 'healthy' person her age - apart from the usual drug and physio regimes. Richard I think found it a little harder but was honest and had a real enthusiasm for his hobbies and interests which was refreshing to see. I hope we get to meet again as we had a good laugh.
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