hmmm what a question, its like asking if the glass is half empty or half full!!
I typed up a full three pages and then thought to myself, no one would want to read my insights, I tend to ramble on a bit
Every single Person with CF comes to this cross road, one in which they need to decide which direction they want to go, its a choice, and a bloody hard choice to make!! No one knows the future, and no one knows their destiny or whats going to happen.
For those of us who have had transplants and had a good run of it with very few problems will definitely tell you that its worth it, but there is always the other side of the coin and that side is ones that dont make it, that dont have a clean slate and they will tell you it wasnt worth it...... It isnt common that people say it wasnt worth it, because many will tell you even a week with air was worth it, to not have to rely on oxygen was worth it, to shower by themselves was worth it.... but its such a individual thing, and every single person will handle things differently....
Arm yourself with as much information that you can, and talk to as many post transplant people that you can, I honestly dont think anything can really prepare you for the rollercoaster you will get on, because I got the shock of my life, and I thought I was pretty well prepared.
maybe it was my lack of support from the hospital, maybe it was a lot of things, but my doctor asked me 6 month after my transplant if I had regrets, and if you're after honesty then what I told him was, yes some days I did regret it, some days I wished I had taken the other road, but realistically I have NO regrets, I just never expected it to be this hard, if that makes sense?
I suffered from major depression after my tx( never in my life ever suffered from depression), and I couldnt understand why I was happier (or seemed happier when I was dying) when here I was alive why wasnt floating on cloud nine? I still go through the motions of existing, and suriving a life I sometimes dont understand, and if anyone read my post I put about tattoos and body modification then you can get a feel for what I do to stay sane!!!!
For me, yes it was worth it, but it wasnt what I expected or thought it was going to be, its a whole new way of life, and whole new set of rules!!
I do a lot of writing about how I feel and what is going through my head, and when I read over the stuff I wrote 12 months ago it still brings me to tears. My favourite saying that I made up after tx that explained what I was feeling at that time was "never aim for paradise, you'll get the desert instead"
When everyone tells you how great its going to be, and how fantastic everything will be, you expect that, and then when it doesnt quite happen, instead of reaching paradise you find yourself alone in the desert struggling to find you way out, but having no idea how to accomplish it..
This post isnt to be a downer, or to be down on transplants, its just to make you aware that dont set your goals too high, and dont expect to just jump back into a brand new life free of problems, because when you dont reach it straight off you do question yourself (or I did)..
You got to crawl before you can walk, and you have to walk before you can run!!!
I am 2 years post now, and I have ways of dealing with my depression and my panic attacks (all of which presented after tx) my will to live is greater then my will to give up, but that said I still have my days unfortunately, and on my worst days is when I turn to self inflicted pain to make me sane.(thats a whole new story)
anyway good luck, and be prepared, and if you want to talk then ask, you need a whole range of post transplanters to devise yourself a coping plan, arm yourself with knowledge, and get your support system happening NOW!!
Tracy
My biggest thing was, it was nothing to what I thought it was going to be
