So sorry for lack of blogging, time seems to have dragged on and on and an awful lot has happened adding up to a very horrible time. I have been finding it really difficult to cope and even harder to put into words, resulting in one extremely long and much delayed blog post.
The first and worst news is that my beautiful, little dog Scruffy who I spoke about in my last post had to be put to sleep. I can't begin to describe how much this hurt all of us as a family. She had been up and down and we knew it was coming but it didnt't make the decision any easier. She died as she lived, knowing she was loved and for her it was the kindest thing in the end as she had started to suffer and you could see in her face that things had changed. Today she will have been gone a month but it seems so much longer, I can't imagine the pain I feel will ever really leave. She is so missed I can't begin to tell you, as I sit here now I am sobbing to think I will never see her little face pop around my bedroom door, or be able to ruffle my fingers through her fur. I only have to look at her photo, or see a dog on tv and I just start to cry. Sometimes I don't even need that trigger. She was with us for 16 years and Scruff and I grew up together, it is strange that you don't realise how big a part of our lives someone is until they are gone. I have never experienced loss like this before and it gives some tiny little inssight into the immense grief and saddness people feel when their loved one has died, it makes the decision to donate someones organs even more amazing, inspiring and truly selfless in my eyes.
As you can imagine, for someone in my position Scruffs illness brought up lots of emotions, questions and worries for me. My poor mum could see I had lots on my mind and being the incredible woman that she is was brave enough to listen to all my fears and worries concerning my end of life care. No parent should ever have to talk about this with their child and it is much harder for her than it is for me but who else can I discuss it with? We have been in this together so far and mum was adament that we should continue to share the burden equally. I had a hospital appointment in July and I decided to bring up my concerns in the only place I could get some answers. My breathing tests were awful as usual and my Dr told me that there isn't any further for them to drop. I don't need numbers to tell me that, my life has literally been reduced to bedroom and the bathroom. I don't go out unless its to the hospital; as there's no enjoyment being so completely breathless, tired and in pain, and suffering greatly for days after. If I'm not doing treatment I'm worn out from doing it and every day that passes feels like a waste of my life. I literally wouldn't know where to cut out any thing else, uni is on a back burner, I don't get downstairs and even talking and eating leave me breathless now. Life has ground to a shuddering halt.
In the last year things have gone down hill and in the last few months I would say the distance between myself and any connection to "normality" has disappeared. My consultant was lovely and tried to discuss this most difficult of topics as kindly as possible. A major issue for us was if my condition detriorated what should we do? I knew that transplant patients can't be ventilated as if this happens, transplant is no longer an option so we were panicked as to where we would go and what we should do, especially as severe episodes of breathlessness are becoming more frequent. My Dr told me that I would most likely see a gradual decrease in my condition and that in this case the best option would be injections of morphine which would alleviate pain and ease breathlessness. I made it clear that I would want transplant to be an option for as long as possible and wouldn't want anything done to jeopardise that chance. She asked me outright if I had thought about dying and where I would want to be, to which I didn't really have an answer. This sounds horrendous and obviously it wasn't great and I hate having to keep discussing it but I think it had maybe been worrying me for longer than I realised and Scruff's death forced the issue into the open. Many people have said that it was a topic that shouldn't have been discussed so directly but if transplant never comes for me the only way to go will be down and if you knew that was a very real possiblity would you not want to know what would happen to you? Talking openly and having a plan in place means its dealt with and doesn't need to be niggling away in my head. If things get worse it would be a scary and frightening time but this makes it slightly easier to deal with. My main concern is how much its hurting mum to have to discuss it as obviously the talks have taken a huge toll on us, but one of my main motivations was that she shouldn't have to make hard decisions if I were extremely ill. Throughout all this I still unshakably believe this call is going to come, even in the darkest days that hint of hope shines like a beacon and I will never give up on it. The main relief for me is that mum will have support if I were ill and that it won't be a "oh my god what should I do" moment.
Things are still unsettled and I am currently filling in a form for what I do want. Its very diffcult to dwell on but I'm trying to think of what I definitely do or don't want strongly and go from there, eg, I want transplant to remain open to me, I don't want to go to my local hospital and I don't want to be sedated or feel as though I am out of control. Other things are less certain.
Aside from that I have been struggling more at home and am now using an oxygen mask for a large part of the day. This means my oxygen is increased and rather than being restricted to breathing through my nose which is a drawback of the nasal specs, I can breathe through my mouth which is good when I'm very breathless. I have felt as though I'm very much going through the motions lately, in a haze of breathlessness and exhaustion then just vegging out all afternoon until treatment again which I hate but can't avoid right now. On my worst days mum has even had to take me the 20 steps to the bathroom in my wheelchair, as you can imagine this is worrying for us all. There isn't really anymore to help me and while infection is not a big problem for me, it means there is little that can be done. I can feel that days are getting harder and feel now more than ever that these lungs need to come sooner rather than later. I don't want my end of life wishes being put into place.
In the last few days I have decided to book an inpatient stay to try a new type of ventilator that I might be able to rest on in an attempt to gain a little more relief. At the moment its the only thing that may make some small difference to me, no other treatment is on offer to me so I have requested to go and try it. No one knows if it will help me as my lungs act quite differently from what is usually expected of them. I'm hoping to go in early in September depending on bed availibility.
Another major piece of news is that call number 8 has been and gone. I got the call on the 23rd of July which was my first ever call on a weekend but sadly the match was not good enough and I had to come home. The usual emotions the same heartache but all the more searing because we all know this needs to happen and soon.
A couple of positives in what feels like a very negative blog (now you know why I've been putting it off). My last post about transplant week and the video I made was a big success. Thanks to all of my fantastic supporters spreading the word, my video accounted for 24% of all hits to the website which is absolutely incredible. I am so grateful to every single person who helped to spread the word, people congratulate me but without you the work I do would literally make no difference at all.
I have also had an overwhelming amount of emails, letters, comments, tweets and post from some truly wonderful people sending best wishes, supproting me and generally making life a little brighter, for this I can't thank you enough. I do read them and appreciate them all, when I am really struggling the love and support helps me to keep fighting and you are responsible for getting me this far. I am so so sorry that I haven't replied to many of your messages. I do seem to be in a world of my own most of the time right now and am finding it impossible to engage with anything much. I have tonnes of emails, tasks, cards, and revision that are all languishing away because I just can't dig deep enough to find the energy to do anything other than keep breathing at the moment. Please know that I appreciate them immensely and will try to reply eventually.
Sadly in the last few days I heard some very sad news, a friend of mine Portia passed away. Portia had waited for a transplant for 3 years and a mutual friend (who also passed away last year) introduced us and although we never met because of cross infection issues, we did stay in touch and Portia especially often text me out of the blue. She was so caring, kind and supportive, despite often spending months at a time in hospital she never stopped thinking of others or lost her lovliness. I am very honoured to be her friend and am devastated that she fought so hard and so long without getting the chance she so deserved. Another of my close friends is having a very bad time healthwise and is currently fighting for her life in hospital. Her name is Rachy and in short she is the most inspiring, selfless, strong and courageous woman I know. A true example of unending bravery and detrmination when the odds are constantly stacked against you and life doesn't turn out as you planned. Please can you send your prayers/thoughts to both Portia's family and Rachy; right now they really need them. Thank you.
I'm really sorry to have such a miserable body of news, it just seems that life has taken a sad turn of late. I hope to be able to keep up the momentum of posting now and that next time things will soon take a turn for the better.
The first and worst news is that my beautiful, little dog Scruffy who I spoke about in my last post had to be put to sleep. I can't begin to describe how much this hurt all of us as a family. She had been up and down and we knew it was coming but it didnt't make the decision any easier. She died as she lived, knowing she was loved and for her it was the kindest thing in the end as she had started to suffer and you could see in her face that things had changed. Today she will have been gone a month but it seems so much longer, I can't imagine the pain I feel will ever really leave. She is so missed I can't begin to tell you, as I sit here now I am sobbing to think I will never see her little face pop around my bedroom door, or be able to ruffle my fingers through her fur. I only have to look at her photo, or see a dog on tv and I just start to cry. Sometimes I don't even need that trigger. She was with us for 16 years and Scruff and I grew up together, it is strange that you don't realise how big a part of our lives someone is until they are gone. I have never experienced loss like this before and it gives some tiny little inssight into the immense grief and saddness people feel when their loved one has died, it makes the decision to donate someones organs even more amazing, inspiring and truly selfless in my eyes.
As you can imagine, for someone in my position Scruffs illness brought up lots of emotions, questions and worries for me. My poor mum could see I had lots on my mind and being the incredible woman that she is was brave enough to listen to all my fears and worries concerning my end of life care. No parent should ever have to talk about this with their child and it is much harder for her than it is for me but who else can I discuss it with? We have been in this together so far and mum was adament that we should continue to share the burden equally. I had a hospital appointment in July and I decided to bring up my concerns in the only place I could get some answers. My breathing tests were awful as usual and my Dr told me that there isn't any further for them to drop. I don't need numbers to tell me that, my life has literally been reduced to bedroom and the bathroom. I don't go out unless its to the hospital; as there's no enjoyment being so completely breathless, tired and in pain, and suffering greatly for days after. If I'm not doing treatment I'm worn out from doing it and every day that passes feels like a waste of my life. I literally wouldn't know where to cut out any thing else, uni is on a back burner, I don't get downstairs and even talking and eating leave me breathless now. Life has ground to a shuddering halt.
In the last year things have gone down hill and in the last few months I would say the distance between myself and any connection to "normality" has disappeared. My consultant was lovely and tried to discuss this most difficult of topics as kindly as possible. A major issue for us was if my condition detriorated what should we do? I knew that transplant patients can't be ventilated as if this happens, transplant is no longer an option so we were panicked as to where we would go and what we should do, especially as severe episodes of breathlessness are becoming more frequent. My Dr told me that I would most likely see a gradual decrease in my condition and that in this case the best option would be injections of morphine which would alleviate pain and ease breathlessness. I made it clear that I would want transplant to be an option for as long as possible and wouldn't want anything done to jeopardise that chance. She asked me outright if I had thought about dying and where I would want to be, to which I didn't really have an answer. This sounds horrendous and obviously it wasn't great and I hate having to keep discussing it but I think it had maybe been worrying me for longer than I realised and Scruff's death forced the issue into the open. Many people have said that it was a topic that shouldn't have been discussed so directly but if transplant never comes for me the only way to go will be down and if you knew that was a very real possiblity would you not want to know what would happen to you? Talking openly and having a plan in place means its dealt with and doesn't need to be niggling away in my head. If things get worse it would be a scary and frightening time but this makes it slightly easier to deal with. My main concern is how much its hurting mum to have to discuss it as obviously the talks have taken a huge toll on us, but one of my main motivations was that she shouldn't have to make hard decisions if I were extremely ill. Throughout all this I still unshakably believe this call is going to come, even in the darkest days that hint of hope shines like a beacon and I will never give up on it. The main relief for me is that mum will have support if I were ill and that it won't be a "oh my god what should I do" moment.
Things are still unsettled and I am currently filling in a form for what I do want. Its very diffcult to dwell on but I'm trying to think of what I definitely do or don't want strongly and go from there, eg, I want transplant to remain open to me, I don't want to go to my local hospital and I don't want to be sedated or feel as though I am out of control. Other things are less certain.
Aside from that I have been struggling more at home and am now using an oxygen mask for a large part of the day. This means my oxygen is increased and rather than being restricted to breathing through my nose which is a drawback of the nasal specs, I can breathe through my mouth which is good when I'm very breathless. I have felt as though I'm very much going through the motions lately, in a haze of breathlessness and exhaustion then just vegging out all afternoon until treatment again which I hate but can't avoid right now. On my worst days mum has even had to take me the 20 steps to the bathroom in my wheelchair, as you can imagine this is worrying for us all. There isn't really anymore to help me and while infection is not a big problem for me, it means there is little that can be done. I can feel that days are getting harder and feel now more than ever that these lungs need to come sooner rather than later. I don't want my end of life wishes being put into place.
In the last few days I have decided to book an inpatient stay to try a new type of ventilator that I might be able to rest on in an attempt to gain a little more relief. At the moment its the only thing that may make some small difference to me, no other treatment is on offer to me so I have requested to go and try it. No one knows if it will help me as my lungs act quite differently from what is usually expected of them. I'm hoping to go in early in September depending on bed availibility.
Another major piece of news is that call number 8 has been and gone. I got the call on the 23rd of July which was my first ever call on a weekend but sadly the match was not good enough and I had to come home. The usual emotions the same heartache but all the more searing because we all know this needs to happen and soon.
A couple of positives in what feels like a very negative blog (now you know why I've been putting it off). My last post about transplant week and the video I made was a big success. Thanks to all of my fantastic supporters spreading the word, my video accounted for 24% of all hits to the website which is absolutely incredible. I am so grateful to every single person who helped to spread the word, people congratulate me but without you the work I do would literally make no difference at all.
I have also had an overwhelming amount of emails, letters, comments, tweets and post from some truly wonderful people sending best wishes, supproting me and generally making life a little brighter, for this I can't thank you enough. I do read them and appreciate them all, when I am really struggling the love and support helps me to keep fighting and you are responsible for getting me this far. I am so so sorry that I haven't replied to many of your messages. I do seem to be in a world of my own most of the time right now and am finding it impossible to engage with anything much. I have tonnes of emails, tasks, cards, and revision that are all languishing away because I just can't dig deep enough to find the energy to do anything other than keep breathing at the moment. Please know that I appreciate them immensely and will try to reply eventually.
Sadly in the last few days I heard some very sad news, a friend of mine Portia passed away. Portia had waited for a transplant for 3 years and a mutual friend (who also passed away last year) introduced us and although we never met because of cross infection issues, we did stay in touch and Portia especially often text me out of the blue. She was so caring, kind and supportive, despite often spending months at a time in hospital she never stopped thinking of others or lost her lovliness. I am very honoured to be her friend and am devastated that she fought so hard and so long without getting the chance she so deserved. Another of my close friends is having a very bad time healthwise and is currently fighting for her life in hospital. Her name is Rachy and in short she is the most inspiring, selfless, strong and courageous woman I know. A true example of unending bravery and detrmination when the odds are constantly stacked against you and life doesn't turn out as you planned. Please can you send your prayers/thoughts to both Portia's family and Rachy; right now they really need them. Thank you.
I'm really sorry to have such a miserable body of news, it just seems that life has taken a sad turn of late. I hope to be able to keep up the momentum of posting now and that next time things will soon take a turn for the better.
