It has now been 2 years since my transplant, I just can’t believe how quickly that time has gone and it has been amazing- I am doing things I never thought I would be able to, and have had so many happy times with my friends and family- which I hope will continue for many more years.
I realised that it has been 4 and a half years since Phil and I bought our house, got engaged and only a few weeks later I really started to become very ill. I went from feeling over the moon and excited about the future to having to come to terms that I was already quite far down the path of a terminal illness. Obviously I had been struggling with my health for some time by that point but I had no idea quite how serious it all was. It seems like a lifetime ago that all this happened but looking back, I also can’t believe how much has changed and happened over a 4 year period. You all know the story so I wont go into it today but I would like to try and express my feelings a little.
The last 6 months have been hard for me. To be honest, I don’t completely understand why but as I reach the 2 year milestone (which is generally considered the main recovery period from the surgery) I am starting to realise what physical issues that I am left with long term and also the mental scars of the whole experience. The physical effects can be testing but I do not wish to complain about them at all, I have gone from being 100% incapacitated and not being able to do anything for myself to having some annoying issues that I ignore whilst I live a normal life- there is absolutely nothing to moan about!
Whilst I could not wish to be more lucky and I fully appreciate all the time, care, expertise and hard work that has gone into to making me as well as I am, being a survivor through an experience like I have had is hard, really hard. It changes you. I have never been someone who really understands depression- I like to think I have a ‘get on with it’ attitude but at times I now understand what it is like to feel depressed and really low.
Again, I honestly do not see that I have a reason to feel like this but I know why I do. I think transplant gives you a severe identity crisis. Illness took away your life, then over the trauma of the surgery and recovery you don’t have energy to even contemplate anything and then you are given your life back and sent out to live it. This is wonderful but what is your life? I no longer have my career, I know I don’t have a full future to plan (hopefully I have a good few years though) and I don’t really know what my purpose is. You do not have the identity of a sick person anymore but you are not quite like anyone else either. Sometimes I feel like I am a square peg trying to fit a round hole although I don’t know if the peg is square and I’m not really sure if the hole is still round! Also, the world changes when you take 4 years out of it and it can be hard to find your new place.
I don’t think my overall personality has changed but I have, and not necessarily for the better. I am obsessed with things being fair and right. Everything that happens in a normal day that is slightly annoying drives me up the wall, and I can’t let things go. I also to a degree have some sort of OCD about things being in their place at home and I can’t possibly sit down or rest until a daily to-do list has been fully completed. If the supermarket doesn’t have 1 item, I have to drive round others until I find it- otherwise I just can’t relax. It’s ridiculous and drives my husband mad!!
This all probably sounds really pathetic. Please do not think I am moaning and I do not want any sympathy whatsoever, I am writing this post as I want people to understand why maybe I am different to before. I feel like I sometimes push people away with my attitudes because I can’t really hide them. I get very frustrated as I have been trying to work on this and assess why I can’t be more normal but I am not getting very far!
I know that a lot of the problems are likely to stem from the drug cocktail I take everyday so there is not much that I can do about it, the main culprit probably being the steroids. My dose may come down a little soon, which could help things but I will always be on a certain amount.
I am basically just having a little time of reflection and I was reading a blog about a guy in America who has had a transplant and he wrote some advice to other transplant patients that really touched me:
“When you get the call (saying there’s an organ available for you), put it in God’s hands and never waste the chance to thank your donor and donors everywhere. Be humble because no matter what pain you went through to get there, you deserve this no more than others waiting. You are very lucky to receive such an inexpressible gift. When you heal give back…you’re not an inspiration, you’re not special, you’re not a chosen saint, you’re the recipient of a life-saving organ from another human being. It is the most precious, special gift anyone of us could imagine….and… YOU OWE!”
These are really good words, it made me think that I shouldn’t let this journey I have been on define me- I am not solely a transplant patient. But then this leads me back to the original question- who am I now? It also makes me realise that maybe this is just all a self indulgence that I feel I am entitled to after a few tough years and I need to focus on doing what he says and giving back- this is not about me and how I feel, it’s about being kept on this earth to give something back. There are also plenty of other people going through what I am and other hard times.
I shall take these thoughts into the new year. Part of the reason of writing this blog is that it is therapeutic for me and a record for me of my illness, recovery and life post-transplant (with ups and downs) and that’s why I wanted to get this down before my trip away. 2014 is a new year and a new start ☺
Just to mention as well that I have started a new page called “Post-Transplant Travels”- hopefully there will be many! I will be posting on this page during my holiday.
And if for any reason, I can’t access the blog online or something- I would like to thank you all for being fabulous friends and followers who have helped me more than I can say. I wish you all a very happy Christmas and a healthy new year.
Love Kerry xxx