I can't believe how long it's been since I last updated. It's been a really difficult month for me with lots going on so I'm going to attempt to write it all in a list.
1) I have been struggling A LOT even for me. Everyday things are getting harder and harder each day with me needing more and more help from my mum. Things like getting washed/dry, eating and even walking the 20 steps to my bathroom have been just too much most days. Add to that the hot weather and pollen allergies, and life has been pretty horrendous. I never wish to sound preachy so try to avoid typical "most people don't realise how lucky they are" statements but it has been very hard to watch people out enjoying the sunshine, walking down the street without a care in the world. I feel like I am in a different world. Stuck in my bedroom, curtains drawn fans blazing, lungs feeling swollen and irritated, unable to catch my breath and the air all around me feeling polluted. Whereas I used to go to bed and think "tomorrow might be a bit better" I realised lately that that idea hasn't come true in several months. It has been unbearable trying to come to terms with the fact that tomorrow isn't going to be better than the day before. Some people will think that sounds negative but it's simply the stage that I'm at with my illness now. I am finding it nigh on impossible to cope and a few weeks ago I just cried evry single day. When I first went on the list the hope of transplant was enough to sustain me each day but now, 4 years later it just isn't enough any more. By no means have I given up but mentally and physically it is just worse and worse. My world that was getting smaller is now virtually non-exsistent. I barely go downstairs now, let alone get outside. Just getting my treatment and basics like meals and washing done leaves very little time (and zero energy) for anything else.
2) Last weekend was a piece of bad luck too far. After suffering for a few days with the heat I was praying for rain to make the air a bit clearer. I was so pleased when there were faint rolls of thunder....how wrong I was to be glad! Mum and I were both in my bedroom when a huge bang and flash of lightening lit the sky, at the same time there was a large flash of light in the corner of my room. We were terrified and it took us a second to realise what had happened. Our telegraph pole had been struck by lightening, knocking our phones and internet out. When the engineer came out to us after the bank holiday he said we were extremely lucky. We happened to have a power surge protector fitted where our router plugs into the electric, if we hadn't our whole electrics would have gone too and caused a huge fire: we were at even bigger risk with my oxygen piped all over the house. Our router and phone were completely fried inside and we have had lots of expense/ hassle getting it all back up again which we really didn't need. Very scary experience.
3) To make matters worse, because I had been so ill I had got very behind on my uni work. My tutor had been lovely, as helpful as possible and given me the maximum extension she could 21 days. I had to have the essay in by Tuesday midday or else the online system would no longer accept it. Then our internet went down with the storm. It was absolute hell! I was writing right up to the wire trying to get it done, pushing myself and my body past its limits. I felt awful but was determined that I wasn't going to let my CF take away this little piece of normality that iis so important to me. It was completely horrendous trying to think how I was going to get the essay onto someone elses computer to send/ having to push myself even further to get out and over to somewhere else in order to get it sent. In the end my tutor came to the rescue again, letting me send her the essay by post, and I finally got it in on Tuesday morning. Now I have a final 4000 word essay to get done in the next couple of weeks and exam next month. It is going to be a bloody struggle to get it done but I will try my hardest and try not to let it beat me.
4) After pushing it to the limit getting my essay ready for Tuesday, I then had my 6 monthly visit to harefield for clinic. It was a really long day and I barely scraped through it. It takes such a lot out of me. My dad felt really ill on the Tuesday and had a high temperature so to add to the drama we had to find someone else to drive us to the hospital, as I couldn't risk catching whatever it was he had. I had the usual ECG, heart scan, x-ray, lung function and blood tests. During my lung function I thought I was going to black out with the effort involved, I saw spots dancing in front of my eyes. I told the doctor exactly how bad I've been feeling, but left feeling dejected; they were still trying but obviously there was no new news for us. I was exhausted and could barely move all evening and the pain in my lungs from all the exertion was terrible.
5) Yesterday I was lying watching tv just before dinner at about 6.30. My mobile started to ring and it was Harefield. The co-ordinator that I'd seen the day before was chatting away and my first thought was, " Oh no there must be a problem with one of my blood results". Imagine my suprise when I was told that they had lungs for me. All the tissue typing had been done, it was a great match and I should come up to the hospital. We got together our things in a daze, could this really be happening so soon?! Every call is different and this time I was extremely calm. As the evening went on I began to think this really could be the one. I didn't need any of my tests done as I'd done them the day before. I met one of the surgical team who was so kind, I felt instantly safe and like he would take good care of me. The Dr on call was lovely and put my canula in with little fuss, I met my anestetist and was told about what I could expect to happen. My pre-med was written up and I signed my own consent form. Then my hopes came crashing down again. I saw the co-ordinator reflected in the mirror, just as she came through the door, I knew from her face that it was bad news. The donor lungs had been examined inside with a bronchoscopy ( small camera) and they were no good. Her words were " theres no point in putting in rotten old lungs when you already have a pair". Since then I have just felt numb, empty. I can't describe the disappointment, gutted doesn't come close. I wonder if it's ever going to happen, will everything ever come together just right like it needs to? everyone says that 7 will be my lucky number and well it might be, but they don't realise that so many people have said the same thing for number 1,2,3,4,5 and 6. I need help so badly now, life is becoming undoable. At the moment I can't think of words strong enough to express how I'm feeling. I have never felt more run down. Everything written in this post plus all the problems with antibodies last month, I just haven't had time to recover from any of it. Bad luck keeps on coming and I nevr seem to do anything but struggle from minute to minute. Having a call reminds me that life has the possibily to change but false alarms knock you down so hard; taking the thing you dream of most away in an instant. It gets more and more difficult to get back up again and keep on "keeping on" every single second of every single day.
As always please keep the amazing donor family in your thoughts,they are suffering in ways I can't imagine.
1) I have been struggling A LOT even for me. Everyday things are getting harder and harder each day with me needing more and more help from my mum. Things like getting washed/dry, eating and even walking the 20 steps to my bathroom have been just too much most days. Add to that the hot weather and pollen allergies, and life has been pretty horrendous. I never wish to sound preachy so try to avoid typical "most people don't realise how lucky they are" statements but it has been very hard to watch people out enjoying the sunshine, walking down the street without a care in the world. I feel like I am in a different world. Stuck in my bedroom, curtains drawn fans blazing, lungs feeling swollen and irritated, unable to catch my breath and the air all around me feeling polluted. Whereas I used to go to bed and think "tomorrow might be a bit better" I realised lately that that idea hasn't come true in several months. It has been unbearable trying to come to terms with the fact that tomorrow isn't going to be better than the day before. Some people will think that sounds negative but it's simply the stage that I'm at with my illness now. I am finding it nigh on impossible to cope and a few weeks ago I just cried evry single day. When I first went on the list the hope of transplant was enough to sustain me each day but now, 4 years later it just isn't enough any more. By no means have I given up but mentally and physically it is just worse and worse. My world that was getting smaller is now virtually non-exsistent. I barely go downstairs now, let alone get outside. Just getting my treatment and basics like meals and washing done leaves very little time (and zero energy) for anything else.
2) Last weekend was a piece of bad luck too far. After suffering for a few days with the heat I was praying for rain to make the air a bit clearer. I was so pleased when there were faint rolls of thunder....how wrong I was to be glad! Mum and I were both in my bedroom when a huge bang and flash of lightening lit the sky, at the same time there was a large flash of light in the corner of my room. We were terrified and it took us a second to realise what had happened. Our telegraph pole had been struck by lightening, knocking our phones and internet out. When the engineer came out to us after the bank holiday he said we were extremely lucky. We happened to have a power surge protector fitted where our router plugs into the electric, if we hadn't our whole electrics would have gone too and caused a huge fire: we were at even bigger risk with my oxygen piped all over the house. Our router and phone were completely fried inside and we have had lots of expense/ hassle getting it all back up again which we really didn't need. Very scary experience.
3) To make matters worse, because I had been so ill I had got very behind on my uni work. My tutor had been lovely, as helpful as possible and given me the maximum extension she could 21 days. I had to have the essay in by Tuesday midday or else the online system would no longer accept it. Then our internet went down with the storm. It was absolute hell! I was writing right up to the wire trying to get it done, pushing myself and my body past its limits. I felt awful but was determined that I wasn't going to let my CF take away this little piece of normality that iis so important to me. It was completely horrendous trying to think how I was going to get the essay onto someone elses computer to send/ having to push myself even further to get out and over to somewhere else in order to get it sent. In the end my tutor came to the rescue again, letting me send her the essay by post, and I finally got it in on Tuesday morning. Now I have a final 4000 word essay to get done in the next couple of weeks and exam next month. It is going to be a bloody struggle to get it done but I will try my hardest and try not to let it beat me.
4) After pushing it to the limit getting my essay ready for Tuesday, I then had my 6 monthly visit to harefield for clinic. It was a really long day and I barely scraped through it. It takes such a lot out of me. My dad felt really ill on the Tuesday and had a high temperature so to add to the drama we had to find someone else to drive us to the hospital, as I couldn't risk catching whatever it was he had. I had the usual ECG, heart scan, x-ray, lung function and blood tests. During my lung function I thought I was going to black out with the effort involved, I saw spots dancing in front of my eyes. I told the doctor exactly how bad I've been feeling, but left feeling dejected; they were still trying but obviously there was no new news for us. I was exhausted and could barely move all evening and the pain in my lungs from all the exertion was terrible.
5) Yesterday I was lying watching tv just before dinner at about 6.30. My mobile started to ring and it was Harefield. The co-ordinator that I'd seen the day before was chatting away and my first thought was, " Oh no there must be a problem with one of my blood results". Imagine my suprise when I was told that they had lungs for me. All the tissue typing had been done, it was a great match and I should come up to the hospital. We got together our things in a daze, could this really be happening so soon?! Every call is different and this time I was extremely calm. As the evening went on I began to think this really could be the one. I didn't need any of my tests done as I'd done them the day before. I met one of the surgical team who was so kind, I felt instantly safe and like he would take good care of me. The Dr on call was lovely and put my canula in with little fuss, I met my anestetist and was told about what I could expect to happen. My pre-med was written up and I signed my own consent form. Then my hopes came crashing down again. I saw the co-ordinator reflected in the mirror, just as she came through the door, I knew from her face that it was bad news. The donor lungs had been examined inside with a bronchoscopy ( small camera) and they were no good. Her words were " theres no point in putting in rotten old lungs when you already have a pair". Since then I have just felt numb, empty. I can't describe the disappointment, gutted doesn't come close. I wonder if it's ever going to happen, will everything ever come together just right like it needs to? everyone says that 7 will be my lucky number and well it might be, but they don't realise that so many people have said the same thing for number 1,2,3,4,5 and 6. I need help so badly now, life is becoming undoable. At the moment I can't think of words strong enough to express how I'm feeling. I have never felt more run down. Everything written in this post plus all the problems with antibodies last month, I just haven't had time to recover from any of it. Bad luck keeps on coming and I nevr seem to do anything but struggle from minute to minute. Having a call reminds me that life has the possibily to change but false alarms knock you down so hard; taking the thing you dream of most away in an instant. It gets more and more difficult to get back up again and keep on "keeping on" every single second of every single day.
As always please keep the amazing donor family in your thoughts,they are suffering in ways I can't imagine.
