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.
I have two evils in my life both of which fluctuate from time to time and both of which will be my mortal enemies till the end of my days; my health and my weight. My health for the first time in years is at a stable point (Touch Wood), for the first time in years I'm not constantly on a knifes edge wondering whether this is it, is this the last year I'm going to be here? I still get the anxiety at times and I still worry but as for right now it's not the kind of worry that keeps me up at night. My weight however will always be a constant battle, it doesn't matter whether I'm in relatively stable health or in a horrendously dying state of health.
Back in 2013 I actually weighed over 13 stone no-one really thought I did because I hide my weight well and actually a lot of that 13 stone was fluid that doctors hadn't picked up on and is the unfortunate side affect of being in Heart Failure. Doctors wanted me to lose weight but no mater how hard I tried I just couldn't do it. The weight just would not move! It wasn't until I got septicaemia and I was put on Diuretics that we realised just how much fluid I was carrying and I lost a lot of weight in a very short amount of time and thankfully that actually helped me get near the target weight the doctors wanted me to be. The last 18 months of me being on the list I kind of fluctuated between being 11stone and 11 and half and the only reason I stayed in that region is because I was eating very little and what I was eating was absolute shit. Rather than have dinner I'd have ice-cream. I was very much in the mind set of "if I'm going to die and I can't eat that much I'm going to eat what I like" and that therefore was chocolate, sweets and ice-cream.
Since transplant I've been finding it very hard to curb my eating, the good thing though is because I can now move it means I've been managing to stay at around 11 stone and maintain that weight. that was until Christmas where I had to get rid of all my chocolate and well you know that meant about a straight week of chocolate and sweets. Somehow I managed to get to 11 stone 5lbs. For my height which is 5 Foot 5 the maximum weight I should be is 11 stone. I'm very comfortable with my body at 11 stone (or you know as comfortable as any woman can be with her body), I don't feel fat but when I got to 11 stone 5lbs I could feel the weight which is never nice. Now I could blame my eating habits on the steroids that I'm now on and there definitely are days when the steroids make me have a stomach that just does not end! Literally I could just eat and eat and not stop from morning till night, but I know when it's the steroids, most of the days it's just me, it's just really nice to be able to eat without feeling like you can't breathe to be able to enjoy eating again and when you've been so close to dying you don't want to deprive yourself of things you like. That's not good for you though, not always.
So I got to 11 stone 5 pounds and said enough was enough and I really needed to start addressing the way I was eating and start some good habits that would hopefully try and engage my metabolism again after the absolute years of abuse it's received. I considered weight watchers again but to be honest you just feel like you're starving yourself on that diet so the second week of January I decided to go for Slimming World and in my opinion it's a much better more liveable plan, it's essentially just healthy eating. Now I know a lot of people would say well why can't you just eat more healthily, and yes my dear friend I could but I need to be judged it's the only way I carry on with it and now that my hospital appointments are becoming further a part the judgement from them isn't frequent enough. So Slimming World provides me with that very much needed judgement that I absolutely need to carry on eating more healthily. I also managed to convince my older sister to come with me (she wanted to lose weight too) and that gives me support too. I do find it hard sometimes at home especially when you live with people who are more than happy to be eating you know snickers and mars bars and that type of stuff. The good thing is though that you have "syns" so you aren't completely restricted from eating some of the stuff you like which is great for me or I would completely fail. Admittedly as well it has to be said I can definitely feel the difference, the week before last I had a few days where I ate a lot of crap and I felt awful for it! Really sluggish and just ughhh, I suppose that's a good thing though because that means I'l keep up the good eating but it's annoying lol.
I'm now in my happy 10 stone range which is great for me and I will keep going till I'm dead on 10 stone. For my height I could technically go down to 8stone 13 but I really can't imagine me going down to that kind of weight so I think 10 stone will be a good middle of the road weight for me, not too big, not too small. It just means I need to keep up my walking and keep at my pilates as well because all that will help. I may even have to up it all I guess to make sure that keep losing because now doubt I'll reach a point where I stop losing.
This time three years ago I was taking part in a campaign that the TV channel ITV had come up with, their "From the Heart" campaign, it was the first time I was going to have to be on live TV and I remember being very scared about it because I was panicking that I would look like a whale, or I'd swear and considering it was live there was no taking that back if that happened (I swear a lot more than people tend think I do :-/), or I was just scared that people wouldn't like me and that they'd basically boo me away. That's not how it went, I got to take both my sisters with me, we met McFly, we met Lorraine Kelly and Aled Jones and everyone was very lovely. The campaign also seemed to be a great success and everyone involved did a fantastic job. At the time I was 10 months into waiting on the list, I wasn't wearing oxygen all the time and this was before I had been put on my IV line in my chest. I remember after this point I did get quite ill and it was only a few months later that the IV line became vital and necessary part in keeping me alive which was closely followed by my first false alarm.
The campaign though, included lots of people and lots of people my age as it happened, it was the first time I had properly got involved in anything transplant I guess because anything media based before was usually very much PH based. I saw a few of the news bits of various different people in the same situation I was in and one of those included my (now) friend Bernice. I thought I'd track her down on Twitter (adding someone on Facebook is a bit creepy if you don't know them lol) and I started talking to her. It was unusual how easily me a Bernice just clicked. We become very good friends very quickly. Besides the fact that both of us were waiting for a transplant we are both so similar and that's probably why we found it so easy to be friends. Also within the transplant world you can seem to be friends with all these people and never have met them and that isn't unusual in that kind of situation. We basically became friends over junk food, disney, Harry Potter, Doctor Who and other various tv shows LOL.
Today it's been 3 years to that day and we always seem to acknowledge today, I'm not sure why but we do and I like it. Normally we send each other a card or a little present but we're waiting till our friend Kath's Book launch on the 28th. Some times when you're angry at your lot in life (And I was angry a lot) you kind of have to find the silver lining and all the friends I gained from my situation were very much, and still are, my silver lining. The amazing friends I gained from my situation and equally theirs sometimes made it worth it. I'm not saying that I'm pleased I was ill and dying and that they were too but some good things come out of horrible situations and Bernice most certainly was one of those good things, as were many other people, but to have one of my best and undoubtedly life long friends come out of that situation is amazing :-)
As a kid I was never one of those girls who was super excited about "becoming a woman" as it were. I never relished in the idea that at some point my body would bleed every month I mean honestly who would?! Really?! There were those girls though, I remember them vividly and I always thought them very strange and the fact they went on about it and talked about it all the time was even odder to me. That part of my life, to this day, I very rarely speak about. I've spoken to my mum, my very closest friends, my sisters, my boyfriend and my doctors about it, but only when asked, it's definitely not something that I offer up information on voluntarily.
Why am I talking about this on here then? Well I'm 25 now people and do you know what that means? A SMEAR TEST... (yay?) This is one of the things that I knew if I got my transplant I would have to do and I've been dreading it. When I was put on the transplant list they had literally just changed the rules because it used to be that you had to get a smear test at the age of 21 and it was something I was worrying intensely about, but then... they changed the rules they increased the age to 25 and I literally was jumping around for joy because that was one less test I was going to have to get done before I could be put on the transplant list and I couldn't have been more thrilled about it. I have never liked the idea of some random doctor or nurse fiddling around... down there... it's just not something I ever really wanted to have done. The closest doctors or nurses have ever come is when I was younger and I had about a billion Right Heart Catheters that were always done through the groin but I was always knocked out so there was no unpleasant looking doctors or nurses in the eyes whilst they did it. Then the next closest would have to be when I had to have my catheter after my transplant but that wasn't too embarrassing but I was just more concerned about having the really uncomfortable tube removed from my body than overly concerned about where it was or what they were doing I just knew I wanted it gone LOL.
So today I had the wonderfully pleasant experience of waiting until 4pm to have my first ever smear test. I was worried about it all day, luckily I had a driving lesson before hand so that kind of took my mind off of it for a little bit. I turned up at the GP where obviously they were running late and I wasn't sure whether I wanted a nurse that I knew or not, do you know what I mean? I wasn't sure whether having a nurse that I knew, liked and saw quite regularly would be good or bad because does having a nurse that I like and know quite well make it even more awkward? or would it be better to just have a nurse that I've never metl and will never see ever again make the experience much better? As it was I got a nurse that I do like and see quite a lot, it's a pretty small GP surgery.
Honestly though? The experience wasn't too bad. They ask you a few routine questions which are simple enough then the awkward bit happens they ask you to get unchanged from the waist down and cover yourself with that paper stuff that they stick on their beds and then they stick a very cold instrument up... there... and it's a bit uncomfortable but I can't say it was horrendous it didn't hurt and when they actually take the swab you can barely feel it. I think the fact I had a nurse I know made it easier because we just chatted about stuff we normally chat about and it just made it seem like a normal ordinary appointment, which admittedly it probably is for her just not for me. The whole appointment probably lasted about a maximum of 5-7 minutes tops and it probably would have been shorter if I hadn't talked to her so much LOL.
I was extremely nervous for this but now that I've had it done I know that I'd be fine to do it again. It's nice to get rid of that fear and now if I had any problems I feel like I might be less anxious or nervous or afraid to mention them, which can only be a good thing. Apparently I'll get sent the results in the post and that could take a few weeks but I'm not expecting anything untoward to occur it was simply a routine thing that I had to have done.
I'm in my 20's and after waiting 3 years,
I underwent a heart and double lung transplant because I suffered from a illness called Pulmonary Hypertension.
This blog is where I documented that journey and will continue to document all the amazing highs and the lows post-transplant. I hope to continue to raise awareness for both PH and organ donation and I would love for you to continue to share this journey with me.