I often wonder if my life is real. I have the "Truman show" thoughts swarming around my brain, this is usually when I'm on the toilet or in the shower because this always seems to be when i think most. Yes that's right!The toilet! I wonder if my life is a test, and with each obstacle that I have to leap over (or in my case drop and crawl under) I do think its some sort of plan which has been mapped out by someone. Now this transplant obstacle (I'm still heading towards) is the scariest one so far. Even though I have been waiting 14 months I still don't know if I have the courage to go through with it. Alot of people seem to think i do, maybe because I don't talk about it much and just get on with my life the best I can. But the truth of the matter is that if I hadn't of had Bella I don't think I would be doing it at all. Having a daughter makes it a no brainer,and I have to do it for her.
I have spoken to other Cf sufferers who have had transplants and read other blogs and I think in some ways it scares me more. I feel better for getting the facts but it all seems so real of how much of a gamble it is. All people with Cf are amazing but to go through having a lung/heart & lung transplant is something else. Fair enough I will be asleep for the operation (so that will be someone elses obstacle), but waking up with wires coming out of me from every direction, the pain and the recovery I don't think I can do it. It's at this point I start to think too much and have to stop myself before I talk myself out of it or worse cry!
So now that I have been waiting over a year i have been starting to wonder over the past couple of weeks if its actually going to happen. I have had one false alarm within this time....does that mean I could be waiting another year for another call which may or may not be a false alarm? If I do have to wait another year,will I manage to wait that long? Or maybe I could get a call in the next 10 minutes?
So the question I have been asking myself the past week is, after all the speculation, emotions and waiting, what will I do if i get my transplant. If I'm going to go through with all that then the time I have after i shouldn't waste really should I? Being told a new set of lungs won't necessarily extend my life but make it better quality then I should definitely at least try and make that time memorable.
Well I don't really want to jump out of a plane, swim with sharks, go on safari or travel the world, but there are certain things I would like to do and see. Alot of people write lists of things they would like to accomplish and sometimes it can be a rather long one! I don't think I could do the same as it wouldn't be very long.
The main event I want to see is my daughter grow up. I want to be there when she has her first day at school, take her shopping for her first uniform, iron and lay it out for her. I want to carry on seeing her doing things for the first time. Like her first sports day, school play, riding a bike, or maybe the first time she's able to make me a cup of tea!! I hate the thought of not being there for her, or not making sure shes has everything she needs in the way I like it doing. I am a strange fussy sod! I also want to go on holiday abroad again. While on the transplant list its not appropriate to go, as it means coming off the list for that period of time away and sorting out oxygen and in my case I.V antibiotics to take with me, Its not impossible but it would be very difficult to do all that, get insurance and take a 2 year old. So a year after transplant I want to go somewhere nice with my little princess, as this will be a first for her. I would have to wait at least a year due to the anti rejection drugs I would have to take. You have to avoid the sun, as these drugs can make you prone to skin cancer, least I think that's the reason! So somewhere its not raining, with a beach would be fab! I have always wanted to go to Florida and swim with dolphins. Oh and of course go to Disney World! So to do that would be amazing as I have wanted to do that forever! So with that maybe a lottery win would come in handy!
I would like to be able to take my 2 crazy dogs out for a run/walk everyday and maybe if I'm daring enough, Bella too.
For the time being they are the main things I want to do. I don't want to have too many things just incase. So fingers crossed I get my transplant and people continue to join the Organ donation register!!
http://www.organdonation.nhs.uk/ukt/how_to_become_a_donor/how_to_become_a_donor.jsp
To be continued.....
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