21.2.16

Our Journey's...

I have read all of TWO transplant books. I'm actually fairly ashamed to admit that I've only read two, I know a lot of people who've written one or at least I know of transplant books that I should probably read but I've read two. Before we go any further this has nothing to do with the authors of those books that I have not read I am sure those books are great but the reason for my not reading them will become clear further on through the blog. 

The two "transplant" books that I have read are by two people that I hold extremely dear and close to my heart Mark Watson who wrote "For My Donor - 20 years and counting" and that was released about 18 months ago now and Kath Graham who recently just released her book "Life is for the Living" They are two very different books with two very different directions but both are equally amazing in their different ways. 

Mark suffered from Cardiomyopathy and had his heart transplant nearly 22 years ago and Kath suffered from Pulmonary Hypertension, like myself, and had her Heart and Double Lung transplant  transplant 2 and half years ago. Now there's a reason I don't read "transplant books" and it's a ridiculous reason, so here we go. I had just "met" Mark as you do with transplant people over twitter and I saw he had just released a book, now at this point in time I was still waiting for my transplant and thought hey why not give it a go? I was pleasantly surprised that the book wasn't strictly all about him getting his transplant but was also about other aspects of transplant and cellular memory and whether or not that existed and other aspects of his life that weren't strictly all to do with transplant. It also pulled on the heart strings  as well when you learn of some things that he's had to go through to get to this point in his life and it's a extremely engaging and insightful read whilst also retaining the humour that Mark is well known for. However for me bits were anxiety inducing, I was pre-transplant and at this point I had given up watching a lot of medical programmes such as "Grey's anatomy," "24 hours in A&E" etc. etc so reading about some aspects of transplant that I had yet to experience and was obviously worrying about at this point because I had yet to experience them was a rather anxiety inducing thing for me to read but I preserved with it and I honestly loved the book. It's eye opening to read about and although I hate the word inspiring it really is inspiring to read a book by someone who has made it 20 years down the transplant road and that gives you the hope that you're always looking for while you're on the list because whilst there are lots of people who do make it to 20 years and beyond we all still get told that the average life expectancy after transplant is 5 years, so to think that we might one day make it to that point is amazing. I am fortunate enough that Mark is now a big part of my life and I get to have his amazing influence in my life daily and although his book gives you a sense of who he is you don't really get to see how amazing he is until you know him. The anxiety though is what stopped me from reading anyone elses books, I didn't want to do that to myself especially whilst I was waiting and it certainly wouldn't have helped with the very little sleep I was already getting. 

Now Kath who I've mentioned on more than one occasion and we all know is basically my PH parent has been writing her book for the past year or so and even though I knew I was going to get the anxiety reading it I knew I had to read it because it's such a big thing for her to have done. Also I'm going to her book launch on the 28th and I wanted to have read it by the time I see her. It's basically her memoir. It's really amazing to read because although you might know someone and kind of have an idea of what they went through you really don't. The loneliness and the fear of being diagnosed with a disease that you know will kill you unless you get a transplant, you know someone must be feeling it but usually as long as someone puts on a happy face on you don't see it and her book really puts in to perspective how hard having PH is and how hard that journey really is, not just for her but also for the rest of her family. There were points in the book that I found hard to read just because it reminded me so much of what I had to go through, the nebuliser and having a IV line fitted and although Kath never graphically described what having a IV line put in your chest feels like, for me, it took me back to the 3 occasions I had to have one put in and taken out. 

I guess the reason I very much stick to Fiction is because when it's real life it's too real for me. I can't read about real life murders, criminal cases, terrorism that type of thing because that just re-enforces in my mind that it could happen to me and that scares me. Reading other peoples transplant stories is too real for me and reading them I'm reading things that could potentially still happen to me, things that I have yet to go through so for me that's scarier than reading a made up story because real life is much scarier. 

Both Kath and Mark are two very special people whom I love dearly and therefore reading their books was something I was always going to do I'm lucky enough that I have both of them in my life and therefore don't have to refer back to their books to feel the amazingness of them both, I could simply text them but I think it's absolutely wonderful that the rest of the world has their books to read and gets to gain a little insight into the world of transplant, in their different ways, and gets to experience just a little bit of them and how amazing they both are. 

Mark's Book:- For My Donor: 20 years and counting
Mark's Blog:- formydonor.blogspot.co.uk
Mark's Website:- www.formydonor.org

Kath's Book :- Life is for the Living
Kath's Blog:- kathryngrahamwriter.blogspot.co.uk
Kath's Website:- kaggraham.wix.com/kathryngrahamauthor

As always, thank-you for reading and chat soon. 
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2 comments:

  1. I will definitely get on to reading one, or both of these books.
    I'm like you, I prefer reading and watching fiction over reality,as reality can disenchant and scare me. Which in turn would waver my motivation to keep fighting and stay positive.

    Im so greatful for your blog. For so many reasons.In particular,a night like tonight, when I can't sleep due to mental and physical discomfort, due to the strains of being a Pulmonary Hypertension patient my self. Reading your blog is not only distracting my mind from going in circles, it's also quite soothing and comforting. It's like talking to someone, who just gets it, someone you don't have to explain and re-explain what it's like to try to maintain a 'life' and still 'live' with pulmonary hypertension. Which is one of the main issues I've been dealing with today.
    Anyway,as always. Thankyou for being a digital friend.

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  2. That makes a lot of sense, I think I'd want to stay away from transplant books if I were waiting for one myself. A friend of mine has just been diagnosed with a serious condition and though I've found books written by survivors of the same condition, it just seems way too early for that right now xxx
    Lucy @ La Lingua | Food, Travel, Italy

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