Wednesday, 31 July 2013

Re transplant, palliative care medications

Things the last few days have been increasingly hard, I'm having some extremely hard times with my breathing, points where I feel I'm going to go Into respitory arrest and my anxiety levels have only made it much worse. I had an exercise test yesterday on 2litres of oxygen, of the 6 minute walk test I managed 3 minutes. My heart felt like it was going to explode and felt like I was going to collapse, my sats went down and my heart went up. So for walking I'm going be on 4+ litres of oxygen and resting I will remain on 2+.

Today nonnie my consultant came in, my breathing wasn't great but better then it has been. But she instantly noticed how bad it was, and said she could see the anxiety and worry in my face. I could certainly feel it. I was started on oramorph 2 days ago which has slightly helped, but as of today I'm going on to MST and also starting lorazepam all to help with the shere effort of breathing and to try and bring down my anxiety levels over it all. These medications all come under the palliative care meds. For me this is all very familiar in April of 2011 my conversations were very much the same, although I was already listed for transplant. Next week they will all discuss whether I can be re transplanted with the surgeons and the whole of the team. I think it's obvious I am on a slippery slop moving at a rate to me that is even faster than last time. We still have the hope that radiation will act as a stabiliser but I'm not willing to put all my chips in one basket and therefore feel the discussion for re transplant is very much appropriate now.

How do I feel about this all? I feel scared, I feel tired, Im praying it will all come right but again I find myself making lists of songs and poems I wish to be played at my funeral. Somewhere I know it will all come right in the end, how I'm not sure and that doesn't mean I will make it but I just know it will be ok.

Remember where there's life there's hope!


- Posted using BlogPress from my iPad

36 comments:

  1. I hope retransplant is a possibility for you Kirsty. The picking songs/poems stage really does suck as that thought its always in your mind whether you want it or not. Have faith xxx

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  2. Do you know if there are any transplant charities that are involved in the London Marathon?

    Ive been following you for a while (ever since I saw your documentary on TV). Im thinking about taking up the challenge of running the Marathon next year (massive challenge as I hate running) but I'd love to do it in your honour and raise money for a charity to increase transplant awareness and research.

    Im always telling friends to sign up to the register and think not only is it amazing to give people a second chance at life, but should also be a comfort to those who have lost someone they love to know that it wasn't entirely in vain.

    Good luck, I hope you get better news soon,
    Jennie
    x

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    1. How about my hospital harefield hosp? Or lltgl which Im part of x

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  3. Thinking of my cf family right now. Kirsty, stay strong and remember the universe already has a plan. I have cf too, and work in palliative care as a counsellor. Right now I would hold yours and your family's hand and listen... thinking of you all.

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  4. On my favorite book called "Illusions" Richard Bach says something that always keep me going "Here is a test to find whether your mission on earth is finished: If you're alive, it isn't. " So dont give up cos there are still a lot of things for you to do in this world, I know God will help you out this time, the same way He did many time before. I will keep you in my prays.
    PURA VIDA (This is saying here in my country Costa Rica, that means "Pura Life", and it is a way to recall us that as long as we are alive everythins is OK)

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  5. There is always hope Kirstie. Thinking of you xx

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  6. Life=Hope......you are right! sending you only positive thoughts and love

    xoxo

    Lori

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  7. Keep strong Kirsty, what you're doing is amazing. Sending prayers for your family, but hoping they don't need them xx

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  8. Phew...tough times. Hang on in there Kirsty.
    Love from Karen, Rich and Ricky xxx

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  9. Thinking of you Kirsty. Have followed your Blog these last couple of years and feel sad that you are having to go through all this again. Listen to your heart, its telling you its going to be OK in the end. So keep strong and remember there are so many people out here sending you their love and positive thoughts

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  10. Sad that you are having to suffer in this way again Kirsty.....but keep strong and remember there are so many people thinking of you. Listen to your heart which is telling you it will be OK in the end . I feel sure you can get through this. xx

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  11. I too have been following you Kirsty since your documentary and you are truly inspirational. My 8 year old niece has CF, I increasingly feel scared at what the future holds for her and knowing I might outlive her breaks my heart. I pray you get your transplant and get healthy once more Kirsty, you certainly deserve it hun. There's some encouraging research that I've heard about although my niece isn't quite old enough to go on the trial yet but fingers crossed they can somehow switch off this nasty gene. Huge hugs and I hope your new meds help soon x x

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  12. Omg i'm very shocked as you were doing so well. I feel sick now, you are a very strong lady and i'm sure things will pick up and I hope the radiation helps you. I don't know what else to say and i'm worried for you. Tx carries huge risk and I cant' get over this is happening to you. You've been low and pulled through a lot in you're life, My prayers are with you xx

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  13. So sorry to hear things are so tough. Thoughts and prayers for you and your family.
    Love

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  14. I'm so sorry you are going through this. I watched your documentary and have been following your blog since. My sister also has CF and I was so elated to see how much you improved post transplant and all the things you got to do after that CF would not let you do before. You gave me such hope that there really is a second chance at life. You truly are an inspiration and I hope so much that you get well. You have made me realize just how important organ donation is and how much of a difference it can make in someones life. Happy thoughts being sent to you and your family. xoxoxo-Courtney

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  15. Kristy, I am so sorry this is happening to you again.I am praying the doctors can get you what you need.I hope you can get listed again soon! Please fight until you know what the outcome of their meeting is next week. Find your inner happy place and keep reminding yourself that it will be okay. Love, Love, Love. Lisa

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  16. Dear Kirstie,

    I lived in Paris, I hope that you are going to understand my message because my English is not very good.
    I saw a report on you last week and I followed your story, your wedding and especially your strength.
    I went on your blog and I discovered that you had of new problems with your transplant.
    Kirstie, I am so sorry for you, I saw to what extent you are a brave, strong girl and I saw that you keptyour smile in all the situations.
    If I can make something for you, anything, do not hesitate to contact me. Maybe I can do anything on Paris.
    I send you all my strength and my courage.
    I kiss you
    Morgane

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  17. Kirstie,

    You've been there before and pulled through with your second chance. Sending positive thoughts and wishing for you the very best outcome. You've been an inspiration to so many so keep up the good fight. Thinking of you and family from across the big pond.

    GA - USA

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  18. you are amazing Kirstie, keep going my lovely xxx

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  19. I don;t have words but you are never far from my thoughts, you are an inspiration and truly special person in this world. x

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  20. could photopheresis help? keep strong

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  21. you are loved so much, praying for miracle xx

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  22. All the best of wishes and prayers for you Kirstie, you are such a strong and positive person, I wish you nothing but the best in your current struggle, keep positive :)

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  23. So sorry to hear you are going through all this again Kirstie, I hope you get your second chance again, and soon. Louise xx

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  24. Hey Lovely girl you keep on fighting. So many people have gained inspiration and strength from your courage. You are truly remarkable.
    I too have CF but am in awe of your spirit and character. You deserve another second chance so hang on in there so you can be given it. Karen xxx

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  25. Kirsty - your fight has been such an inspiration to Kate and I am sure many others. We all had the privilege of meeting you at Henfest and so much want you to be there next year as well, so all our thoughts are with you to help you get through this. The Godmother xx

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  26. I've only just caught up with the fact you're suffering with rejection. I'm so sorry for you and your family as you were doing so well. I guess its always a risk but its such a shame for you after all you went through. I hope that if re-transplant is an option and you decide to go with it that you don't have to wait long and that you keep well. All my love and prayers Louise

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  27. Really hoping they will agree to the second transplant, hopefully will come and see you soon:)Hollie xxxx

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  28. Beautiful lady. I knew nothing of your journey until my friend just posted this on facebook. Are there any other holistic ways you've been helping yourself?! meditation, affirmations? I could help you xxx

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  29. Thinking of you. Stay strong which is something you do so well. I know you will continue to be an inspiration to so many other cf sufferers and pray that another more succesful transplant is on the horizon for you. Thoughts are also with your family who I know fight every step with you

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  30. Hi Kirstie,

    I found your blog after watching your documentary "love on the transplant list" which I have now watched several times. You're an absolutely amazing person and I really do hope you get well soon.

    Keep smiling, you're an inspiration to us all.

    Much love, Maddy xx

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  31. Hi kirstie. I 'm elisabeth. I saw your story at french tv. And i find you're very courageous. I' m very sorry to learn your news problems of health. But you are a fighter and you 'll win this battle. With my amities. Kiss of france bye

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  32. My thoughts and prayers have been with you over the last few weeks. I lost my beautiful daughter also called Kirsty aged just 21 in March 2010 through CF and I really wish that your story has a happy ending. Hoping that things improve for you xx

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  33. Hi Kirstie, my name is Monica.
    I just wanted to say that ever since I watched your documentary on Norwegian TV approx a year ago, I've been following you. You are such an inspiration with your strenght, courrage and positive thinking and I will forever be touched by what you learn me about life. I understand these days aren't easy for you or your family - and I just wanted to hopefully participate in giving some inspiration and strenght back to you. You've already given so much to so many.
    Look how many people commenting, likeing, backing and following you! How many people who loves you. How many people who has been touched - only by you! It's no doubt that you're here for a reason.
    And remember that as long as you're here, your mission is stil on!
    Keep on fighting, as hard as you can.
    I sincerely hope that you feel better soon, and that when you've won and conquered this final big wave, God will let you surf on easy water for a long, long time!

    Never give up, Kirstie!
    Now show the horrible, horrible CF that it has NEVER met ANYONE like YOU! :-)

    Wish you all the best,


    Monica

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  34. Kirstie you are amazing woman very strong and brave! you are always in my prays and thoughts.xoxoxo

    Nicole

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