I'm not going to pretend that I am an expert on "being on the transplant list" because I definitely am not/was not. If you've been reading for any length of time you will know that there were moments there where it just all seemed far too hard because it was! Transplant list life is hard and absolutely nothing can prepare you for it, nothing. Now I am not saying this to scare anyone who is about to go on the list because that is far from my intention. It is simply the truth. If like me you know you're going to be in for a long wait prepare for a very hard mentally challenging road.
I remained positive for a very long time and I personally believe my attitude has a lot to do with why I'm still here. Negativity although natural brings you down and I personally believe it can make you feel more ill. Now the longer I was on the list the more that negativity creeped up on me, it was like a looming cloud constantly in my peripheral vision always there reminding me. It was definitely what I found the hardest, remaining positive and not losing it when people were constantly saying to me,"it'll be soon" "I just know it'll happen really soon." I'm a realist those kind of statements never helped me when I was on the list, I never wanted people to think me getting my transplant was a given because it was not in any shape or form. I was VERY ill at the end there, there was a very good possibility I was going to die, I was getting to a point where they potentially could have taken me off of the list. There were a lot of things I never told anyone while I waited because I didn't want people to worry but we were getting to a point guys and it was not a point that I ever thought I was going to get to while on that list and it was scary as hell. Absolutely nothing in this world can prepare you for that. The night I got my call I had actually told two of my friends what I wanted them to wear to my funeral the colour that type of thing, and of course it was all said in a joking manner but I was deadly serious.
I do/did get a lot of message from people just about to go on the list or who are on it and have been for a only a little while and they ask me how I got through it, how I waited that long. There is no hard and fast rule for getting through it, you get through it the best way YOU know how. I think for me working for as long as I physically could helped me. I probably worked longer than I should have done I know that all of my doctors were advising me to stop working after I had been on the list for about a year because we could see how much I was deteriorating at this point but I knew for my mental well being at least I had to carry on. I was very lucky as I worked for company that had grown with me as I got more ill and they just learnt to adjust and adapt to that, they were honestly amazing. I managed to carry on for another year and it was hard and I went down to 3 hours a week but to me it was worth it. Unfortunately you do get to a point where you have to know your limits and my limits were being bed ridden for days after I did my shift at work and I was living a very limited life. When I quit it helped it meant the days normally spent in bed weren't so painful and I wasn't so limited because I wasn't exhausted from work but you sacrifice that people aspect of your life and you do have to make that decision.
Other things I did was make sure I planned things that I could do. Now that could range from shopping with a friend, to dinner with friends, cinema day, DVD day etc. They didn't have to be extravagant things they just had to be something that I could look forward to and actually do and enjoy without being in to much pain. Also I had to be very aware that whatever it was I planned that if I got a call I had to be okay with cancelling what ever it was. As a matter of a fact I had a very busy June planned before my call happened and I had to cancel it all; Taylor Swift at hyde Park, My Vampire Diaries convention, a wedding, various things with friends. I had a lot planned. Heart and Lungs trumps plans though and I always knew that.
I found doing PH and Organ Donation awareness stuff really helped me. People would always say but doesn't that just make you think about it more and it's hard to describe but I felt like by doing all the awareness stuff I was in some way earning my transplant. I never wanted to feel like I did nothing towards "the cause" I always felt like how can I expect some generous person and family to help me if I haven't helped anyone else and a lot of it was just talking and that was something I could still do and if it helped then that was what I would do.
I think one of the main things I did that helped was THIS and by this I mean my blog. This blog really helped me. It was never intended for lots of people to read I shared it with others so if they wanted to they could but this blog was for ME I needed somewhere to get stuff out, to express myself. I used to internalise a lot of stuff I'd never talk to people about anything and I knew going on the list that, that had to change and this was my way of changing that. It was never a feel sorry for me space it was a this is what I'm feeling and I just need to say it and it always made me feel better once I had, it was like releasing those feelings and emotions into the world they were no longer so heavy for me to carry they got just a little bit lighter.
I suppose I'm going to sound a bit of a hypocrite saying this but making sure you're healthy while on the list would definitely help. As I've said before Pilates really did help me post transplant and I'm so pleased I did it I'm also sure that by having a little bit of extra weight behind me helped to because it meant my body had something to feed on whilst it's been healing but I'm saying this I know how hard it is to do any kind of exercise when you are that ill and I've never been one to say no to chocolate or pizza but I think even something small can help.
It's weird for me now because the list seems like such a lifetime ago now and the cloud lifted the second I woke up from my transplant and now that I'm on the other side I can say "The pain that I went through, the excruciatingly long wait I had was worth it in the end" and trust me Stacie of just 36 days ago would hate me for saying that because while you're going through it and experiencing it; the pain, the mental torture, the wait just doesn't seem worth it at all but that's because you can't appreciate it until you're on the other side.
As always, thank-you for reading guys and chat soon
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.