This post was started a couple of weeks ago now but I've been so busy with uni it hasn't been finished until now!
What a week its been....
On Tuesday, I spoke to a lovely journalist who is writing my piece for the Guardian newspaper (won't be in for a few weeks but will let you know when it is). We talked for ages and discussed all aspects of my life with CF and life on the list, she was so easy to talk to and after reading a copy of the article I am really pleased it. I also did a interview with local radio last week about transplant etc which went down really well and seems to have caused a lot of people to sign up which again is fantastic and gives me hope that the message is getting out to the public.
On Wednesday night I had started my NG feeding as usual and was laying in bed watching tv, while my mum was sorting out some medication in the other room. Suddenly my mobile started to ring with a number I didnt recognise....it was Harefield my transplant hospital. It was completely surreal, after talking for the last two weeks about waiting so desperately for a call I was getting one! The co-ordinator asked how I was and then said they had a potential offer of lungs for me. I was to get up to the hospital as quickly and safely as possible. My mum came in while I was talking and saw me grinning like a cheshire cat and nodding to confirm who it was.
I got dressed quickly but kept having to sit down as I was very breathless from exersion and nerves- the only sign that I was slightly nervous, otherwise I was just so excited and calm.
After my first call, I knew to dress in layers and take a cardigan for the chillyness of the car, i took my ipod to listen to on the way there while my mum grabbed some clothes and my medications that cant be packed in advance. At 12am we were off, the journey there was very quiet and we were in our own little worlds. It is lovely to drive so late at night, the dark blue sky, stars and twinkly lights are very calming. All the way there I kept reminding myself that this was probably a false alarm, even though deep down I felt it wouldnt be. I said a little thank you to the amazing family who had made such a brave decision when they were having the worst night of their lives.
When we arrived at Harefield my coordinator told me that they retrival team had gone to the donors hospital to check the lungs and that we should hear in a couple of hours. The next hour or so was filled with tests. I had bit of a nightmare having my blood taken which as regular readers know is a big stress for me. I have been severely needle phobic after a bad experience as a child and while I am 100 times better than I used to be I still get quite stressed if things are not going well.
First of all they were trying to get a canula in (so they have access when you are under anesthetic) but after a lot of trying it was a no go. So then the dr focused on trying to take some blood which needs to be tested to check for infection etc. Between the canula and blood tests it must have been 20 odd attempts and i was getting pretty upset. In the end they got the blood they needed and agreed they would try a canula later if we got the go ahead.
After that I had weight, height, loads of questions to answer, was examined, xrayed and even signed the consent forms for if the op went ahead. I kept trying to stop myself getting to hopeful that this may be my time but it is very difficult. You start to plan ahead, thinking "if it goes ahead I could be home for xmas, I'll be able to do this and that..." a whole world opens up in front of you, and all the dreams you have harboured seem possible. At 3am my coordinator told me that the donor lungs had been damaged and my transplant wouldnt be going ahead. I expected it but it was gutting, just like that everything that seemed possible 2 minutes ago was snatched away from me, and goes back to being just a dream.
We got home and I went to bed but couldnt sleep very well. I felt, numb, exhausted and angry. I never thought I would feel angry but I certainly did this time, not at anyone or anything just from pure frustration and disappointment. I kept reminding myself of the donor family to get some perspectiveand praying that they felt some peace in their grief, their pain was much more than mine. I am so grateful they decided to donate even though it couldnt happen.
I spent the next week or so absolutely exhausted, I had trouble sleeping and kept thinkng I heard the phone ringing. In all though, I think the aftermath has been less than my first call. I was probably physically harder hit this time but mentally I picked myself up pretty well and although it still hurts that it didnt go ahead I'm hoping that one day it will.
I also had an appointment at my CF hospital the next day which obviously meant I was more exhausted but am pleased to say that all the tests etc were good or stable so I am very very thankful for that.
It was 18 months in between calls for me, and I really hope it wont be that long again. As everyone keeps telling me fingers crossed for third time lucky!
x
What a week its been....
On Tuesday, I spoke to a lovely journalist who is writing my piece for the Guardian newspaper (won't be in for a few weeks but will let you know when it is). We talked for ages and discussed all aspects of my life with CF and life on the list, she was so easy to talk to and after reading a copy of the article I am really pleased it. I also did a interview with local radio last week about transplant etc which went down really well and seems to have caused a lot of people to sign up which again is fantastic and gives me hope that the message is getting out to the public.
On Wednesday night I had started my NG feeding as usual and was laying in bed watching tv, while my mum was sorting out some medication in the other room. Suddenly my mobile started to ring with a number I didnt recognise....it was Harefield my transplant hospital. It was completely surreal, after talking for the last two weeks about waiting so desperately for a call I was getting one! The co-ordinator asked how I was and then said they had a potential offer of lungs for me. I was to get up to the hospital as quickly and safely as possible. My mum came in while I was talking and saw me grinning like a cheshire cat and nodding to confirm who it was.
I got dressed quickly but kept having to sit down as I was very breathless from exersion and nerves- the only sign that I was slightly nervous, otherwise I was just so excited and calm.
After my first call, I knew to dress in layers and take a cardigan for the chillyness of the car, i took my ipod to listen to on the way there while my mum grabbed some clothes and my medications that cant be packed in advance. At 12am we were off, the journey there was very quiet and we were in our own little worlds. It is lovely to drive so late at night, the dark blue sky, stars and twinkly lights are very calming. All the way there I kept reminding myself that this was probably a false alarm, even though deep down I felt it wouldnt be. I said a little thank you to the amazing family who had made such a brave decision when they were having the worst night of their lives.
When we arrived at Harefield my coordinator told me that they retrival team had gone to the donors hospital to check the lungs and that we should hear in a couple of hours. The next hour or so was filled with tests. I had bit of a nightmare having my blood taken which as regular readers know is a big stress for me. I have been severely needle phobic after a bad experience as a child and while I am 100 times better than I used to be I still get quite stressed if things are not going well.
First of all they were trying to get a canula in (so they have access when you are under anesthetic) but after a lot of trying it was a no go. So then the dr focused on trying to take some blood which needs to be tested to check for infection etc. Between the canula and blood tests it must have been 20 odd attempts and i was getting pretty upset. In the end they got the blood they needed and agreed they would try a canula later if we got the go ahead.
After that I had weight, height, loads of questions to answer, was examined, xrayed and even signed the consent forms for if the op went ahead. I kept trying to stop myself getting to hopeful that this may be my time but it is very difficult. You start to plan ahead, thinking "if it goes ahead I could be home for xmas, I'll be able to do this and that..." a whole world opens up in front of you, and all the dreams you have harboured seem possible. At 3am my coordinator told me that the donor lungs had been damaged and my transplant wouldnt be going ahead. I expected it but it was gutting, just like that everything that seemed possible 2 minutes ago was snatched away from me, and goes back to being just a dream.
We got home and I went to bed but couldnt sleep very well. I felt, numb, exhausted and angry. I never thought I would feel angry but I certainly did this time, not at anyone or anything just from pure frustration and disappointment. I kept reminding myself of the donor family to get some perspectiveand praying that they felt some peace in their grief, their pain was much more than mine. I am so grateful they decided to donate even though it couldnt happen.
I spent the next week or so absolutely exhausted, I had trouble sleeping and kept thinkng I heard the phone ringing. In all though, I think the aftermath has been less than my first call. I was probably physically harder hit this time but mentally I picked myself up pretty well and although it still hurts that it didnt go ahead I'm hoping that one day it will.
I also had an appointment at my CF hospital the next day which obviously meant I was more exhausted but am pleased to say that all the tests etc were good or stable so I am very very thankful for that.
It was 18 months in between calls for me, and I really hope it wont be that long again. As everyone keeps telling me fingers crossed for third time lucky!
x
