Ok since Tuesday, when I was given my lung transplant file, i've been reading through it and coming up with loads of questions and reflecting on my thoughts of what it means to me.
It's strange because I don't feel that sick, but as my hubby tells me, i'm so used to being at this level of fitness and sickness (for want of a better word) that my life will be so radically different post transplant (tx), all going well, that I won't believe how sick I was.
I'm not really anxious at the thought of a transplant...yet, although when the call comes (false call or real) i'm sure i'll be extremely anxious and nervous. This is probably because i've had some time to come to terms that transplant would probably be an inevitable part of my future. My main concerns are more post tx.
I'm quite a control freak and although my body is not in perfect health i'm still in control of it. This idea of a machine breathing for me and waking up after the op still being tubed is a little concerning to me. I'm not great waking up after anesthetic at the best of times, usually fighting the anesthetic and being quite sick, but i'm sure the wonderful docs and nurses know what they're doing.
I'm also worried about all the potential stresses the anti-rejection drugs put on the body causing issues in their own right. Will my kidneys hold up to the task? Am I going to develop cancer after getting my life back? Let alone worrying about infection and rejection.
Then there's what you can and can't eat. It looks pretty similar to that of the diet of a pregnant lady BUT it's just so grey. High risk and low risk as opposed to yes you can eat this or no you can't makes things so confusing?
Then my thoughts go to the actual donor and their family. How do you write and thank them for the gift of life. It must be one of the most difficult letters to write and feel you've got write.
Then there's the anxieties of going home and getting your life back. I've ensured that my inhaler and more recently i-neb, has been stuck to me like glue (in my handbag or pocket) and has been for probably the last 20 odd years. I would be so odd to be able to go out and not need it at all. It's almost like a security blanket.
I've written down loads of questions for the docs, physios, psyc's and dietitians so hopefully they'll be able to answer them all.
So really I guess the 1st hurdle and anxiety is that of the assessment. I can't think of anything worse than pinning your hopes and future on a transplant to be told that due to something about your blood or disease it's a no go. I don't see that that's going to happen to me and am keeping positive but I guess we'll see.
Just some thoughts and i'm sure i'll blog more on this subject.
PS. Thanks for your lovely comments ladies. It's nice to be able to discuss positive outcomes and for others to share the experience. Stay healthy ladies x
Rest in Peace Aunt Marybeth
2 years ago