This week is National Transplant Week and as well as writing a blog update which you can find here I also wanted to post a special one.
Not only is it Transplant Week this week but on the 9th I will have waited for a transplant for 4 YEARS. 4 years of waiting and hoping that my life will be saved, 7 false alarm calls for transplant and still no successful match. It is heart breaking. On the other hand it is 4 years I wasn't expected to see at all, 4 years of heartache but also good times, happy times and for all the crap I wouldn't have missed it for a second. When I was put on the list 4 years ago I wasn't expected to live for 18months. Now the toll on my body is more than ever before, I can feel a change for the worst and I don't know how much longer I can hold on before things start to turn even more.
I have made a video appeal to ask people to consider becoming an organ donor. Without a transplant there is no hope for me. Please watch my plea and pass it on to spread the message far and wide, to FB pages, twitter, add to your blogs, send to email contacts. PLEASE. You can do something today and save lifes of people waiting each day for their lives to start. I wouldn't ask anyone to do anything I wouldn't do myself, I am fully registered as a donor and vividly remember telling my parents as a child that I wanted to help someone if I died. My transplant might never come but if my heart, kidneys, liver or any other organs could give someone else a chance I would want that without any hesitation. Good coming out of tragedy.
The full version is here http://t.co/k9pOX2O
And the shorter version is here. http://t.co/Ct8LdYG
Please share them and help the 10,000 people waiting for a transplant, 3 of whom die each day because their call doesn't come in time. Needless preventable deaths that we can stop.
Thank you for your support. xxx
Tuesday, 5 July 2011
Scared
Huge apologies for lack of posts lately, I haven't forgotten you but as I said last time there just haven't seemed to be the right words. Usually when I write a blog post it just flows without me thinking about, I speak honestly and from the heart and most of the time don't even read my work back. But every time I have tried to get something down these last few weeks it's been stunted, difficult and I've given up.
I'm not exactly sure why this is, nothing major has happened but things have been very hard. I don't like how things are going or the person I'm becoming and maybe that has something to do with it. I have been thinking about what single word would sum up my feelings over the last few weeks and the word that seems to come close is scared.
Uni has finished for the time being (more about that another day) but rather than the relief I expected to feel once that huge stress was lifted never really materialised. Instead I have become bored very quickly and long for something with meaning to fill my days. I'm caught in a viscious circle because while I crave something meaningful, my body craves rest. I am reduced to watching tv or tapping away on my computer; when I'm not doing treatents I'm too tired and breathless to do anything other than rest. It hurts me terribly to have to face that my life has come to a shuddering halt. I don't go out anymore (I've not left my house in 6 weeks), I can't apply myself to workk because my energy and concentration don't stretch to that anymore. 90% of my day is sitting in my room and even then I am often gasping for breath just sitting still. Life is so far removed from anything I actually want to do that its really an exsistence and to write those words is like sticking a knife in my stomach. Forcing me to realise how bad it's become.
The heat that everyone else enjoys so mcuh is abysmal to me. I sit in my room with a fan directly on me, ice packs, cold drinks the works but nothing eases my breathing and I long for cooler days. Its hard to know its only going to get worse for me heat wise from here on in. I had to cancel my clinic appointment from last Monday as there was just no way I could survive the ordeal of getting dressed, down the stairs, into the car etc and spending all day in the hot when I couldn't draw breath sitting in bed. My oxygen levels in my blood are lower than usual and I'm actually using a higher flow of oxygen as I can't manage on my usual amount. I'm dragging myself to the bathroom, and back to my room and that is about it. Friday morning I woke up with a rumble in one side, sat up and proceeded to cough up blood, something I never do that is terribly frightening. All these things are harsh reminders that things are slowly but distinctly getting worse. My hospital are always asking if I have any new signs of infection and I can honestly say I don't, that just means there isn't anything that can be done. I worry that I don't say the right words to the people that need to know, to get over just how bad things are, to make them understand that there isn't much more to cut out of life. Eating and talking leave me so breathless, pausing inbetween words, choking on food. It's scary.
My little yorkshire terrier Scruffy has been really ill this last week. She is 16 and has had a full and happy life, loved and spoilt by us all. She has been up and down on a day to day basis and there have been many times when we have thought about taking her to be put down but couldn't bring ourselves to do it, she is eating drinking and in no pain and while she remains so we will do all we can to keep her comfy. I have been very fortunate to never experience a family loss, but Scruff's condition has stirred all sorts of emotions in me. It sounds silly but when her breathing was very bad and she was having coughing fits her little face looked so scared. As I looked at her it hit me, this could be me one day. Locked in my own little world, unsure what was happening and relying on other people to make decisions for me. Would I be laying in a hospital frightened, scared? I have always been frightened in hospitals at the best of times but would I want to spend my final days there? I hate feeling out of control and if I can possibly manage a procedure without sedatives I do, so to imagine myself so scared and helpless in a frightening place tears me apart. From the other point of view, seeing us all so upset about a dog, how would my family manage watching me slowly wither away? How would they cope if they lost me? It makes me feel physically sick.
I don't want to feel this way, as though everywhere I turn is a scary prospect that I can't bear to think about. It is an isolating and terrfiying feeling. MEanwhile transplant shines like a beacon of hope in the sea of darkness around me. If only it will come in time.
xxx
I'm not exactly sure why this is, nothing major has happened but things have been very hard. I don't like how things are going or the person I'm becoming and maybe that has something to do with it. I have been thinking about what single word would sum up my feelings over the last few weeks and the word that seems to come close is scared.
Uni has finished for the time being (more about that another day) but rather than the relief I expected to feel once that huge stress was lifted never really materialised. Instead I have become bored very quickly and long for something with meaning to fill my days. I'm caught in a viscious circle because while I crave something meaningful, my body craves rest. I am reduced to watching tv or tapping away on my computer; when I'm not doing treatents I'm too tired and breathless to do anything other than rest. It hurts me terribly to have to face that my life has come to a shuddering halt. I don't go out anymore (I've not left my house in 6 weeks), I can't apply myself to workk because my energy and concentration don't stretch to that anymore. 90% of my day is sitting in my room and even then I am often gasping for breath just sitting still. Life is so far removed from anything I actually want to do that its really an exsistence and to write those words is like sticking a knife in my stomach. Forcing me to realise how bad it's become.
The heat that everyone else enjoys so mcuh is abysmal to me. I sit in my room with a fan directly on me, ice packs, cold drinks the works but nothing eases my breathing and I long for cooler days. Its hard to know its only going to get worse for me heat wise from here on in. I had to cancel my clinic appointment from last Monday as there was just no way I could survive the ordeal of getting dressed, down the stairs, into the car etc and spending all day in the hot when I couldn't draw breath sitting in bed. My oxygen levels in my blood are lower than usual and I'm actually using a higher flow of oxygen as I can't manage on my usual amount. I'm dragging myself to the bathroom, and back to my room and that is about it. Friday morning I woke up with a rumble in one side, sat up and proceeded to cough up blood, something I never do that is terribly frightening. All these things are harsh reminders that things are slowly but distinctly getting worse. My hospital are always asking if I have any new signs of infection and I can honestly say I don't, that just means there isn't anything that can be done. I worry that I don't say the right words to the people that need to know, to get over just how bad things are, to make them understand that there isn't much more to cut out of life. Eating and talking leave me so breathless, pausing inbetween words, choking on food. It's scary.
My little yorkshire terrier Scruffy has been really ill this last week. She is 16 and has had a full and happy life, loved and spoilt by us all. She has been up and down on a day to day basis and there have been many times when we have thought about taking her to be put down but couldn't bring ourselves to do it, she is eating drinking and in no pain and while she remains so we will do all we can to keep her comfy. I have been very fortunate to never experience a family loss, but Scruff's condition has stirred all sorts of emotions in me. It sounds silly but when her breathing was very bad and she was having coughing fits her little face looked so scared. As I looked at her it hit me, this could be me one day. Locked in my own little world, unsure what was happening and relying on other people to make decisions for me. Would I be laying in a hospital frightened, scared? I have always been frightened in hospitals at the best of times but would I want to spend my final days there? I hate feeling out of control and if I can possibly manage a procedure without sedatives I do, so to imagine myself so scared and helpless in a frightening place tears me apart. From the other point of view, seeing us all so upset about a dog, how would my family manage watching me slowly wither away? How would they cope if they lost me? It makes me feel physically sick.
I don't want to feel this way, as though everywhere I turn is a scary prospect that I can't bear to think about. It is an isolating and terrfiying feeling. MEanwhile transplant shines like a beacon of hope in the sea of darkness around me. If only it will come in time.
xxx
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