As promised.

I’ve finally got round to sitting down and writing an update. I apologise for being so slack with the posting lately but it has been a busy few months! Apparently when you haven’t got end-stage liver disease you can go out and do stuff everyday! This is something I’ve learnt first hand over the past few months and it’s pretty cool!

I have been living with my new liver for just over five months now, things have been going extremely well and I continue to be amazed at how lucky I am. It hasn’t been an easy ride, this transplant business was always going to provide many challenges, physically and emotionally and although things have gone so well and pretty much according to plan I have still had challenges along the way.
I was experiencing horrible light headedness and headaches constantly for about three weeks a couple of months ago. It was awful and I felt like I had taken a huge step backwards with my recovery. I was really fatigued again and this along with the light headedness and headaches was making it difficult for me to carry on as I was. I was having to sleep loads more and going out and doing stuff was really taking it out of me again.
A lot of people mistakenly believe that a transplant is a cure for everything that was wrong before and that once you’ve had it that’s it, nothing else to worry about! That really isn’t the case. The whole point of any transplant is to prolong life and improve the quality of it, it isn’t a cure and it isn’t a quick and easy fix. You certainly don’t walk away from it with an end to on-going health concerns. Of course for anyone who needs a transplant it is the best possible outcome, the life you gain afterwards is more precious than anything ever and the opportunities that come with it are so much more than you could have hoped for before, the opportunity to live being the biggest one of all! Life after transplant is never taken for granted but I think one of the things I have found challenging is adjusting to this new life.
Since the age of seventeen, I have always had to adapt to my health, to different stages and levels of my PSC and Ulcerative colitis and all that comes with both conditions. I quickly learnt how to be good at adapting and I understood and knew my body very well. I learnt everything I could about both conditions and I knew when to worry about symptoms, when to ignore symptoms, when to act on worry and when to just get on with it. Having a transplant is like being diagnosed with a new condition all over again in many ways. You have to relearn what to worry about; whether a certain pain is just something healing or something going really wrong, whether a bout of nausea is just anxiety or a worrying side effect from one of your meds. Your body is completely different after a transplant and you have to learn everything about it once again and begin to understand what is ‘normal for you’ now, it takes a lot of getting used to and I’m not quite there yet, I’m still learning and still unsure but I will get there. All of the challenges now are far less impacting that the challenges I was faced with whilst waiting for my transplant and all the positive,amazing things like BEING ALIVE and being able make the most of life again completely outweigh the difficulties.

Like I said, things are going really well. My new liver seems to have settled in very comfortably and its doing a super job! Any little blips I’ve had have been easily resolved or aren’t related to my liver, usually they are related to the medications or my body reacting to the trauma of the surgery but so far none of them seem to be anything to worry about. After my clinic appointment on Thursday, it was decided that I don’t need to go again for FOUR WEEKS! That is an amazing achievement for me and proves how well my super liver is doing!

Life is now back in full swing. I have been able to start exercising again gently and work towards getting a decent level of fitness back. I’m still not ready to take party in any dance classes yet, I have lost a lot of confidence with it and want to be a bit stronger and fitter before I go to a class so I don’t completely fail at it and destroy my confidence even more. I know it sounds ridiculous, it is but it’s my personal choice. The biggest thing to happen over the past few months is that I have been able to go back to work after two years! I’ve got myself a new job and I am really enjoying it! I’m starting off slowly with part time hours, they have been really understanding of my situation and that has made everything much easier. It is so satisfying coming home after an 11 hour day at work and realising how impossible that would have been just a few months ago.

My mum, dad, boyfriend and I went to Oxford last Saturday to attend the PSC Support meeting. This was my first meeting as a committee member of the charity and as a transplant patient. It was so good to meet lots of new people and to see some friends from the group again. Lots of people were coming up to me and saying how they enjoy following my blog, that was really lovely and I’m glad to know it reaches and helps so many people.
Dr Roger Chapman is a PSC specialist and he gave a talk about the past, present and future of PSC. It was so informative and really reassuring to hear of all the research that is going on into the causes of PSC and new treatments. It is a really exciting time for PSC patients as we are closer than ever to getting the answers and hopefully the cure we so desperately need!

psc support

This week is going to be pretty exciting! A few weeks ago NHS Blood and Transplant asked if I would take part in a promotional video for their staff to instil a sense of pride about the work they do, the video wil be used at their leadership conference and directors roadshow. Of course I said yes, I always want to help with anything positive related to organ donation and to be able to be a part of something that is going to have a positive effect on their amazing staff is wonderful. So tomorrow the cameramen are coming to my house to film me talking about my transplant story and how my life is so different now I’ve received my new liver. Then, on Wednesday I am going to Bristol to the NHSBT Organ Donation and Transplant building where I am going to be meeting and talking to the staff who arrange all the transplants and I actually get to meet the man who arranged mine in October and say thank you to him. It’s going to be so surreal and very emotional but I cannot wait, what an amazing opportunity! I will write a post about the experience in the coming weeks.

Well, I don’t think there is much else to say except thanks once again for everyone’s ongoing support, it means a huge amount to me!

Thanks for reading x

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2 thoughts on “As promised.

  1. Hello Maxine, just reading your posts. I had my liver transplant last may so I’m heading to a year. I agree when you mentioned that people look at a transplant as a cure when in reality the transplant has fresh challenges. It comes with a whole load of its own problems. I also write a blog, if you’re interested. http://www.transplantmum.blogspot.com

    Hoping to keep up to date with this lovely blog! You’re doing so well and so brilliantly.

    Monira x

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