My life feels like it is all about CF and transplant at the moment and today it has really got me down, I am told to expect days when I am on a high and days when I am feeling really low but it's quite worrying as I am not even on the transplant list yet. Today is indeed a low day, I feel as though anything will set me off into a crying state, I was just speaking to my nan on the phone and I said I so desperately want my old life back but I know I can't have that and I need to learn to accept that but I'm finding it really hard.
Today I have done two assessment tests, a full lung function which involved me sitting in a big glass box and blowing into the machines and another blowing and inhaling a mixture of oxygen, helium, carbon monoxide and nitrogen, I also did an excerise test - this was a bleep test so I had to walk from cone to cone and keep in time with the bleep, I managed 130 metres on 2 litres of oxygen and was told to stop due to high heart rate and low saturation's - both of these tests I had been dreading but they weren't as bad as i had thought.
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22 years old, happy, bubbly and honest. I enjoy life, seeing friends, music, talking & laughing & I have a love for all things pink. I am currently waiting for a double lung transplant due to Cystic fibrosis. This is my story living and waiting.
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2 comments:
I felt lower during assessment time and the time after than I did when actually listed, as then I thought "well here we go, something to move forward towards to get me my old life back". So I think what you're feeling is normal. Don't beat yourself up about it honey, it's a huge thing and so very scary and it will make you feel down at times. Keep on talking about it, vocalise as much as you can, to friends family or through this blog, it's a very cathartic thing to do. Sending huge hugs xx
Just to let you know I'm thinking of you. It must be so hard to be in hospital, on your own a lot, going through all these tests and worrying about the future. I would be surprised if you didn't feel down actually. Hopefully when you get home for Xmas and are surrounded by home comforts and family, things will start to feel a lot better. Big hugs xxxx
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