Sorry for lack of updating lately.
Following on from my last post I've been feeling very up and down still this last week, and I didn't want to blog until I was feeling better. One of my lovely transplant co-ordinators phoned me last week to see how i was as she knew I'd been feeling down. Things like that really make you feel like they care, you're not just a number, its funny how much it cheered me up.
Anyway I have been feeling a bit better so I'm back!!
I have some exciting news now. Today I recieved a letter from the cf trust. My mum (she really is the best mum in the world) has nominted me for the Trust's breathing life awards, basically an awards night for people with CF. I am very honoured to have been short listed and invited to the ceremony on 28th May!
My mum, dad and me are all going up to London and stay overnight in the Hilton Metropole hotel, we get a 4 course meal and entry to the awards night. Winners are announced on the night and its all rather exciting! I'm very nervous, especially as I have to record a small film to play on the night, cue grinning idiot who is too nervous to say anything!
I will also get to buy a posh frock to wear,which I will throw myself into whole heartedly as any good nominee should ;)
Bear in mind I only found out this morning and I have already trawled the internet and tried on one nice dress this afternoon!
I'm also very happy with the terrible weather! I absolutely LOVE it when its raining and cold, and you can snuggle up all warm indoors. It has been snow storms here on and off all day.
I'm telling you that being pushed in a wheelchair against gail force winds,snow and hail, is incredibly cold but also lots of fun!
Physio time now and then a nice hot bath (with gorgeous lush products) and snuggling up in bed later with snacks and a dvd! bliss!
xxxx
Saturday, 22 March 2008
Thursday, 13 March 2008
I'm all shook up...
I'm really loathed to write this blog entry. I don't want to write about feeling down but this blog is to record the highs and lows of life on the list.
First of all let me say before I go any further, that if I had the chance to go back and erase my false alarm I would not do it. I am grateful to have experienced a false alarm, some people on the list aren't even that lucky. It WAS a very positive day.
Unfortunately it has hit me harder than i thought. I've spent 8 months on the list now,and although I think about transplant most of the time, subconciously I started not to tense whenever the phone rang, not to suddenly think "they could call any second" not to lay down to go to sleep and think that my life could change in an instant. I was always aware that it could but I became more settled than when I first went on the list.
After last Tuesday however, after all the excitment, and shock and exhaustion are gone, I'm left with a feeling of sadness that it didn't go ahead and a terrible longing for Harefield to phone me again.
This wasn't my chance, but it makes everything seem more real and I just want to know they will phone again, that one false alarm isn't all i'll ever get.
I desperately want to talk to someone about it all and have done repeatedly. But the answers I want to hear are answers they can't give me. I want someone to tell me that it will be ok, and that they will phone again with the real deal. For someone to give me the security to know that the prize is there waiting, no matter how far away, but that it is definately there.
But no one can.
I suppose its the thing of "giving with one hand and taking away with the other" While the experience has given me renewed hope (which i still have more than ever), it has also shaken up my whole world again, leaving me feeling the way I do.
Lots of people who have experienced the same thing have told me that this is natural and things will seem better soon, which I'm sure they will. I'm also having some other hassles at the moment which don't help.
Sorry for the whinge, i do count my blessings everyday but this has knocked me for six.
XXX
First of all let me say before I go any further, that if I had the chance to go back and erase my false alarm I would not do it. I am grateful to have experienced a false alarm, some people on the list aren't even that lucky. It WAS a very positive day.
Unfortunately it has hit me harder than i thought. I've spent 8 months on the list now,and although I think about transplant most of the time, subconciously I started not to tense whenever the phone rang, not to suddenly think "they could call any second" not to lay down to go to sleep and think that my life could change in an instant. I was always aware that it could but I became more settled than when I first went on the list.
After last Tuesday however, after all the excitment, and shock and exhaustion are gone, I'm left with a feeling of sadness that it didn't go ahead and a terrible longing for Harefield to phone me again.
This wasn't my chance, but it makes everything seem more real and I just want to know they will phone again, that one false alarm isn't all i'll ever get.
I desperately want to talk to someone about it all and have done repeatedly. But the answers I want to hear are answers they can't give me. I want someone to tell me that it will be ok, and that they will phone again with the real deal. For someone to give me the security to know that the prize is there waiting, no matter how far away, but that it is definately there.
But no one can.
I suppose its the thing of "giving with one hand and taking away with the other" While the experience has given me renewed hope (which i still have more than ever), it has also shaken up my whole world again, leaving me feeling the way I do.
Lots of people who have experienced the same thing have told me that this is natural and things will seem better soon, which I'm sure they will. I'm also having some other hassles at the moment which don't help.
Sorry for the whinge, i do count my blessings everyday but this has knocked me for six.
XXX
Tuesday, 4 March 2008
Oh what a night!
Yesterday it was my sisters birthday, we enjoyed a nice dinner and i got to play on her partners ipod and see my cute little nephew. I had an uneventful evening, and went to bed about 11pm. Just before 12am I dreamily woke up when i heard a noise but couldn't quite work out what it was so I was drifting off again,when my mum came in and was told me to answer the phone it was Harefield offering me some lungs.
My dad (usually as cool as a cucumber) had answered it and told them I couldn't come to the phone as I was asleep! before he fully realised who it was.
My coordinator told me to get up to the hospital as soon as we could. I shoved on some clothes and gathered my things together. I have to say I've been worried how I would react to a call but I was extremely calm, my parents flapped a bit but I just felt excited. My heart beat very fast directly after putting the phone down but I just focused on getting ready. Everytime I thought "this could be my chance" a grin spread across my face.
We arrived at Harefield about an hour later, and had my obs done, all of which were normal. Then the anesthetist came and sited a canula which i handled quite well, he was really nice and took lots of blood. I saw my coordinator and she said everything was looking good but more checks were being done,all being well I would go to theatre at 5am. She said it was my decision but it was probably best to leave telling my family until we were definate. Me and mum sat and chatted about very mundane things really and I told her who needed to be phoned etc if it all went ahead.
At 3.30 my coordinator came back. As soon as I heard her footsteps approaching I knew in my heart what she would say. She told me that the lungs had been examined by their drs who weren't happy enough with them, and the operation would not be going ahead. I felt disappointed but at the same time very thankful to have had the dry run. We got home just before 5am and i fell into bed still dressed.
The whole experience was great. I know that sounds weird and I do feel a little disappointed but thats nothing to how excited and hopeful I feel. Last night I didn't get stressed or upset, I dealt with things calmly. The overwealming emotion wasn't dread it was excitment. I could be days, months years, minutes before i get another call, but I COULD. Out of the blue life can completely change, hope was dangled in front of me last night and taken away again but it is still there. Just out of sight waiting to emerge again. Thats good enough for now.
Please spare a thought today for the family of the donor. Although the lungs were no good for me they stillmade that amazing decision to save someones life even though they were going through immense pain and grief. Very brave people.
xxxxx
My dad (usually as cool as a cucumber) had answered it and told them I couldn't come to the phone as I was asleep! before he fully realised who it was.
My coordinator told me to get up to the hospital as soon as we could. I shoved on some clothes and gathered my things together. I have to say I've been worried how I would react to a call but I was extremely calm, my parents flapped a bit but I just felt excited. My heart beat very fast directly after putting the phone down but I just focused on getting ready. Everytime I thought "this could be my chance" a grin spread across my face.
We arrived at Harefield about an hour later, and had my obs done, all of which were normal. Then the anesthetist came and sited a canula which i handled quite well, he was really nice and took lots of blood. I saw my coordinator and she said everything was looking good but more checks were being done,all being well I would go to theatre at 5am. She said it was my decision but it was probably best to leave telling my family until we were definate. Me and mum sat and chatted about very mundane things really and I told her who needed to be phoned etc if it all went ahead.
At 3.30 my coordinator came back. As soon as I heard her footsteps approaching I knew in my heart what she would say. She told me that the lungs had been examined by their drs who weren't happy enough with them, and the operation would not be going ahead. I felt disappointed but at the same time very thankful to have had the dry run. We got home just before 5am and i fell into bed still dressed.
The whole experience was great. I know that sounds weird and I do feel a little disappointed but thats nothing to how excited and hopeful I feel. Last night I didn't get stressed or upset, I dealt with things calmly. The overwealming emotion wasn't dread it was excitment. I could be days, months years, minutes before i get another call, but I COULD. Out of the blue life can completely change, hope was dangled in front of me last night and taken away again but it is still there. Just out of sight waiting to emerge again. Thats good enough for now.
Please spare a thought today for the family of the donor. Although the lungs were no good for me they stillmade that amazing decision to save someones life even though they were going through immense pain and grief. Very brave people.
xxxxx
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