GIFT OF LIFE: 'I'm at a low point when I can't get my breath'

FRIDAYWe're going to Centre Parcs in North Nottinghamshire, it's only half-an-hour away but it's like a major expedition. I need canisters of oxygen and the canisters are all the size of a bedside cabinet, a carrier bag of tablets, electric wheelchair, manual wheelchair, two lots of portable oxygen and that was just for starters!We got there and the accommodation is very nice. All the rooms have ensuite bathrooms and I can walk to the toilet.SATURDAYWoke up at 9am which is early for me and went out in my electric wheelchair and around the park.It's the first time in weeks I've been fully independent.We went to the swimming area but I didn't swim. I had curry in the evening and managed a bit (Helen finds eating difficult because of the effort to coordinate her breathing with chewing and swallowing).And I was up until 9pm – well, I am on holiday (Normally Helen is in bed by 7pm as she feels exhausted by then).SUNDAYI woke up at 10am and had a 'walk' in the electric chair. Abbie (Helen's daughter) and a friend drove over from home to visit us for the day. My niece and nephew also came over and they had a good time.MONDAYMy son Daniel didn't want to leave, he said he'd enjoyed it so much. I started to feel really chesty as if there was a rock pressing on my chest. We left and came back home.TUESDAYGot up at 9am. I think I have an infection and went to the GP. I hope I haven't got an infection as I will have to temporarily come off the transplant register, I've been started on oxygen and antibiotics.WEDNESDAYI started to feel worse and the day seems like a blur. I have a suitcase full of tablets collected by dad from the chemist. I can't lie down as I'm coughing too much.THURSDAYWent to the Royal Hallamshire Hospital and saw the consultant who admitted me as soon as he saw me.I am on antibiotics and oxygen. So I'm off the transplant list. I'm at an extremely low point when I cannot get my breath, it feels like I have prickly heat.I hope when you are
reading this I will be out of hospital and I will be glad when this is all over as I'm beginning to feel desperate.