Life changing news.

Waiting is such a pain in the arse. I always have been very impatient but with all this hospital malarkey over the past seven years, waiting is something I have had to get better at.
On our return from London I knew I had to wait three days for the phone call from my transplant coordinator telling me if I had been placed on the list or not. Three days is nothing I could handle that, I’ve waited much longer for results in the past but actually, those three days felt like three years! This time I was waiting for something that was going to determine the next few years of my life and potentially change the rest of my entire life…not knowing was really taking its toll on me.
The three days passed and Friday arrived – the day I was told I would get the phone call. I made sure I woke up early so I wouldn’t miss the call but I tried to take my mind off of it by carrying on as normal and not sitting by the phone, waiting for it to ring. That didn’t really work out so well! 4 o’clock came and I couldn’t wait any longer. Perhaps they had tried to call me but couldn’t get through, maybe they got my number wrong, what if they just forgot to call me? Of course I knew none of that was the case but I convinced myself I had better call them just to make sure. I managed to get through to Grace, my transplant coordinator and she gave me the news I had been waiting for – life changing news. She told me that the doctors had decided I needed to be placed on the transplant waiting list now.

So, that is how I got to this point. When people ask me how I feel about it I tell them that I’m a bit scared but it’s the best option for me. I see it as a positive thing. Sure, I’d love to be in a position where having a liver transplant isn’t classed as ‘the best option for me’ but I’m not in that position and it’s the only chance I have to get better. I’m not going to sit here and tell you that I’m completely fine with it and unafraid of what might happen, of course there are days when I get extremely anxious and full of fear about the whole thing and I could choose to spend everyday feeling that way, it would be quite easy,but the way I see it is that these are the cards I’ve been dealt. I can face it head on with a positive attitude and enjoy life as much as I possibly can, or I can sit and dwell on the negative side of this and all the things it’s stopping me from doing. Yes, I get frustrated that I’m 24 years old and at the moment my life is somewhat on hold. It’s frustrating that I live a life where getting out of bed often feels like a marathon, feeling like crap everyday is now normal for me and having the freedom to do whatever I feel like doing or to go wherever I feel like going is pretty much out of the question. I no longer have the luxury of spontaneity and I’m lucky if I’m able to stick to plans I’ve made but despite all of that I am grateful. I am so grateful for all the good things in my life and everything that I have got to experience and achieve so far. Everything could be a lot worse, at least I am still here, living my life. It may not be the life I saw myself living this time last year but it is still pretty great. I am incredibly lucky.
Life isn’t meant to be fair or easy, everyone has shit to deal with but I believe the way you choose to see things, the attitude you choose to have and the people you surround yourself with are ultimately the things that colour your life. There is always the choice to focus on positivity. There is always someone worse off than you and that is what I tell myself whenever it all gets too much.

Life is too short to not be happy.
happycat

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6 thoughts on “Life changing news.

  1. Reading your blog brought the waiting back to me, my husband like you had psc and it got to the stage that he needed a transplant. We waited 197 days, I am not going to say it was easy, it wasn’t.

    It’s nearly 4 years since he had his transplant and he is well and living his life to the very full. We made some massive life changing decisions after his transplant, so that we could cherish his second chance at life, but we never forget how lucky we are and the generosity of a stranger with a donor card.

    You will get lots of words of wisdom, people mean well, but all I can say is NEVER NEVER give up hope, you are in safe hands. You need to look after yourself so that you are fit for surgery when it happens.

    I set up a blog like yours to record our journey, I spent hours trawling the net looking for support and inspiration, there is support out there for you and your mum just to help you through. I am sure my husband will want to send you a note when he reads your blog. Now take care, Cat xx

    1. Cat, thank you so much for your comment. It is always great to hear from others who have been through the same experience. I’m so glad to hear your husband is living life to the full after his transplant – all the waiting must seem like a small price to pay now looking back.
      Hearing stories like yours and your husband’s is what keeps me hopeful. Thank you for getting in touch xx

      1. Hey, you’re very welcome, it helped me talking to people that had been thought the same thing, you look for inspiration and hope, I found so much comfort reading about others experiences and finding parallels with what we were going through.

        If you need to talk that’s no problem I can always give you our landline. We would be happy to talk about our experiences if it would help you and your mum, do take care, you will get that call xx

  2. I am so happy for you. I’m very glad that you made the choice to get on that list. I haven’t been through the “transplant” journey yet, but I’ve spoken with many that have. They are happy and healthy and have their lives back.

    Of course life style changes have to be made, and diet is very important. It’s nothing that you can’t handle though.

    Waiting is not one of my strong suites either, so I can relate to you there. That’s the worst part about everything, waiting. In the end, these things are well worth the wait.

    Although scary at times, I know you will get through just fine. There’s always a bit of fear when it comes to the unknown. That’s to be expected. I’m sure you are experiencing all kinds of feelings. This is no little thing that you are going through.

    Are you involved with a support group? If not, I’d like to suggest possibly looking into one (and your Mom too). Make sure you find the right one for you though. There are a lot of pity parties out there and that is not only counter-productive, it’s harmful. In my opinion.

    You have an awesome attitude and you seem like a strong woman. I am a firm believer in the power of a positive attitude. It will take you a very long way.

    I look forward to reading more as you go through your journey. I will keep you and your Mom in my thoughts and prayers.

    Sincerely,

    Shelley

    1. Sorry, I just realised I never replied to this post.

      Thank you for your kind words, I definitely see it as a positive thing now even though it’s scary I can’t wait to feel well again afterwards!
      It is a strange situation to be in and you’re right, I am experiencing all kinds of feelings but they’re mostly positive and when I do have a funny five minutes I let it happen then just move on, I don’t dwell on the negative side of it and I try not to get caught up in the overwhelming fear that sometimes comes over me.

      I am part of a couple PSC support groups on facebook, I find them useful and learn a lot from other people on there but I know what you mean, sometimes I have to ignore stuff or have a break from reading posts because it can be counter-productive. I never compare my situation or experiences with anyone else because PSC is so individual to each person, no two cases are ever the same.

      Thanks again for your comment and yes PMA always pays off! 🙂 x

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