8.21.2011

A difficult time to put into words...

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.

27 comments:

  1. Tor you're amazing, and so driven to make things better for you and everyone on the transplant list. You're an inspiration and I often think of you. So sorry you've had such a tough time with first losing Scruff and then your friend. My thoughts are with you as always and I cant wait until you DO get your gift of a lung transplant. STAY STRONG we all need you to inspire us xxx

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  2. Don't worry about replying to people's posts as we all understand your enormous struggle. You are so courageous and determined and you have many friends all over the world (I'm in Australia) willing you on. You are one brave lady. xxxx

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  3. You are such a brave inspirational young lady and I feel so sad about your position. You have to remain positive though- as a transplant can seriously change your life around. I was very poorly with kidney failure until a transplant transformed my life- this was 11 years ago now- I count my blessings but I do feel incredibly guilty that others have not yet received the transplant they need.

    Keep positive and I know you have touched a lot of people with your bravery- my hubby has now becomne a donor card carrier since reading your tweets so you know your efforts to promote organ donation aren't in vain. All the best to you and I am keeping everything crossed that call no 89 will be 'the call' . Take care xxxxxx

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  4. I think of you often and hope that the call comes very soon. Your honest accounts of how hard this is are moving.

    You have fought for such a long time. Surely some happiness is just around the corner.

    With lots of love and best wishes

    Tor (another one!)

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  5. Amazing, amazing, amazing is what you are. So many people are rooting for you and willing that call to come.

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  6. You are truly an inspiration to me and reading your tweets and blog makes me cherrish the life and especially the health i do sometime take for granted.

    Through i picked up the courage and became an organ donor and it was surrpising to see how fast and quick the registation process was!

    In my hearts of hearts, I truly believe you will find this elusive organ dononation that you've been waiting years for!

    You are a born survivor Tor and i hope one day when you are well our path will cross and i can convey in words, how inspiring you have been to me.

    Keep strong.

    Dayo.

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  7. I'm not up to writing a lengthy reply at the moment but just wanted to leave a comment to let you know that you're in my thoughts Tor.

    Take care,
    Moll x x

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  8. Not sure what to say, getting quite emotional reading this. Just want to offer my encouragement and thanks.

    Your fantastic writing skills, blogging skills, and social networking skills have touched so many people! The planet is lucky to have you.

    You are one of the most inspiring people I know. Helping to encourage those of us that are in lucky good health to help others.

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  9. Strong, beautiful and brave Tor. You are keeping up such a good fight and in my thoughts often. I have everything crossed for you.

    Its easier said than done, butt try no to dwell on what you have not done. People who have contacted you will understand.

    Having your wishes done just in case is a good idea. Its scary thinking of it, but you will feel better once it is there. Remember though, that you can change it at any time. When I wrote mine down and had a big disscussion about it, things did ease for me. And in scary situations, I was able to relax a little knowing that they would be followed.

    Keep fighting.
    Kim

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  10. I have followed your fight for many years and your courage and determination never cease to amaze me and I am sure the many others who likewise do so.

    Don't ever give up fighting, CF will never win, it does not define you, it is how you deal with everything that has arisen with such dignity and determination that shows your true character.

    I lost my son to CF last year and though we have never met I have seen you many times at the Brompton and everyone is inspired by your fight!

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  11. sorry to hear that you have had such a horrible time. It must have been hard to lose your dog and then to hear about your friend dying it must have been awful :(
    I was Glad to hear that the video was a success and helped with transplant week.Sorry that things are still so hard for you, I hope that the admission to try the new ventilator will be helpful..I feel so powerless hearing about you and Rachy all I can do is offer my sincere wishes for improvement for both of you and my prayers that your next call comes soon.
    All the best Mark X

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  12. You know....I've been following you for awhile now and you have the right to be as negative and upset as you are. Don't sugar coat it, let it out. I can't imagine how you feel, but I pray to the stars that one falls from the sky for you. I want you to be able to live so badly! Much love.

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  13. Just sending my love along with everyone else. I have so much hope that I will wake up one day to hear you got THE call. Thank you for sharing your fight, as hard as it is. Much love, much light,

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  14. Your words are having HUGE impact on everyone who reads them, Tor. All our love to you and yours

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  15. Hi Tor, I don'y usually reply but your blog meant so much to me. I lost my daughter 5 years ago, same age as you, after a succesful transplant, her lungs rejected, and although she was given a second chance, sadly the call never came. We had the same discussions you and your mum have had, and although at the time it was painful, I feel so lucky to have had the closeness and love we had. By being on a transplant list you never give up, so all the family kept extremely positive to the end. My daughter was always worrying about us, and how we were feeling, this seems to be the same with all you wonderful CF youngsters, I feel so proud to have been such an important part of her life.Stay strong, stay positive, try and get through the hard days, knowing the phone may ring. Thinking of you all

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  16. Tor don't even waste a tiny bit of energy on worrying about not replying to people, even thinking about it is exhausting and we all understand that so are not offending or anything in the slightest!
    I'm so sorry you are having to plan what will happen at the end of your life, I really hope it doesn't come to that. I find it difficult to understand why so many have had their calls before you and keep praying it must be your turn soon.
    I'm so sorry to hear about Scruff, we lost our cat after 22 years and even now 4 years later I still miss him. When you are ill they become your best friend and pets are truly amazing, RIP Scruff xx

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  17. I can't even imagine what you are going through. I started following Rachy and you about December 2009. I was thrilled when Rachy got her call and had hoped yours would come soon. I am very sad for you both, for all the struggling you are going through... Please know my thoughts and prayers are with you, that that match will come soon. It is because of you and Rachy that I added "organ donor" back to my driver's license (that how we do it in the USA).

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  18. Hello,

    You are amazing inspiration! you gotta keep fighting it. Sorry to hear you go through tough times.

    I also suffer from a rare lung disease - pulmonary hypeternsion. In my case, there's not much that can help improve me current condition. I am also sadly not a candidate for a lung transplant. I do know what it feels like to be breathelessness. I would gave up anything to be one day free of feeling SOB. However, I don't think if i could ever have the courage to be put on the transplant list even if I could be. You are a brave young women!! You will get that call when the right time comes.

    Best wishes.
    -B

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  19. I have been reading your posts for some time now. You are wonderful and brave and i admire you completely for showing such courage and strength. I have also recently signed up to be an organ donor, you are truly inspiring and i really do wish that all your hopes and dreams will one day come true and your pain will be a distant memory.

    All the love and best wishes in the world.
    Vanessa xxx

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  20. You are such an incredible person and, as many commenters have already said, have people all over the world rooting for you. Thinking of you, Rachy and Portia and her family. Let your next call come soon and be the one you need xxx

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  21. Just wanted to send love and encouragement your way.. Stay strong; a turn for the better must be just around the corner! x

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  22. Tor,

    So very sorry to hear of the passing of your friend and your dog, Scruffy. I know it is such a sad loss for you to bear. Dogs are wonderful creatures and we miss them so much when they are gone. The very same as your best friend or closest of family members.

    I've been reading your blog and Rachy's for quite some time and am sending positive, mendy vibes your way. You both are really brave and inspiring young ladies. Stay strong and never give up the fight. Praying your donor call will come very soon.

    "LC"

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  23. You are amazing. Sorry to hear about Scruff. Will keep praying that the call comes. Anisha

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  24. You too are an amazing and inspirational person. Never forget all the lives you have touched.

    The very best of luck xx

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  25. I stop by your Twitter blob and I'm always moved and touched by how you manage to compose yourself when dealing with such difficult topics. Your words are an inspiration to me - to live my life without taking it for granted, to do everything I can to make other people's lives easier and to enjoy even the smallest glimmers when things are difficult. You said in a previous post that, with uni on hold, you were lacking something meaningful but I think you bring meaning to so many people's lives through raising awareness of CF and the organ register and through sharing yourself with us so selflessly. You seem to me to be a remarkable woman and I can only hope I'd have you courage and downright stubborn refusal to give in if I eve find myself in a similar situation.

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  26. Hello Tor, I have been reading your blog for a while. I just wanted to say that I would bet that there are a lot of people like me who read your blog without feeling able to post a comment. I am sure that just like me they are really hoping for good news for you. I am not someone who prays but you are in my thoughts and hopes. V x

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  27. Tor you're beyond amazing and I'm so pleased to be able to call you a friend. I'm so sorry that you have to deal with all this hardship and sadness in your life. but you keep doing what you're doing, keep on shining. and your day will come.

    much love and positive thoughts.
    -Ducky

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