38 per cent is my average lung function. It can peak to the 40's but only ever after IV'S and quite often plummets to 32%
I have been seeing my psychologist sajel for around 3-4 years now at my cf unit.
My last admission she came in to my room and asked me how i would feel should the conversation of a referral to the transplant center be bought up.
This took me by complete surprise at her asking me and my instant question was why? i wanted to know why she was asking me and if she had been sent in by my Dr to breach the subject sensitively. Her answer was no and that she simply wanted to know how all her patients feel about transplant as early on as possible, she said she would ask children the same if she worked in pediatrics. My reply was why are you asking me now then? if you like to know 'just in general' why was it not spoke about when we first met and over every meeting we have ever had.
I was and still am sure this is the way referral is breached. She explained to me that they sometimes refer people much earlier nowdays to give patients a better chance to come to terms with what is coming and to get all questions, fears and worries answered before they got so poorly they would need a transplant sooner resulting in not much time to have these questions answers.
Im not sure how i feel about transplant as its never been something i have truly thought about in detail or ever really see it has something i would need.
However over the last 6-8 months have found my mind wondering to the possibilities of having a transplant and what the outcomes of it are, the percentage of it being successful, am i ill enough to warrant even being listed.
To get listed is a very long drawn out, mentally draining process. It starts with an initial referrel from your cf team to the local transplant centre, mine would be the harefield. Once the referral has been sent you meet with the assessors who perform multipal tests to see if you are a good candidate for transplant, as to what the tests are im not entirely sure as this is all new to me but im guessing the main tets would be lung function, bloods, gas exchange, weight, quality of life and prognossis of life without transplant.
The whole process is very daunting. I know people who have had both good and bad experiences and outcomes following transplant but quite honestly its something that petrifies me. I cant sleep at night with nightmares of how it could go terribly wrong. Quite honestly i am a mess through the worry, i dont sleep, i dont go out, i cant socialize as i would like to. I feel locked away in my own fear with nobody to talk to. I shut the world out but equally i want to pull friends and family closer for help and support but wouldn't know what to say as my mind is still in a mess with all the fear and questions.
I'm very lost at the moment i keep thinking i will be fine and the whole transplant thing will just never be an issue, i day dream at night of how my life will be, i imagine i will wake up the next day jump out of bed make some coffee, get washed and leave the house as a normal person would do. I imagine me running the hoover round, doing some gardening, putting a load of washing on, walking the dogs, cleaning the car..... living. I believe it will happen and its the only thing i seem to smile about..my dreams..A daydream believer i guess!
But once im asleep my mind takes on a different persona and i picture me hooked up to wires gasping for breath or agony having being cut the length of my sternum to get these rotten lungs out of me, trying to talk through a Traci as im recovering, will i be strong enough, will i cope? do i want to? will the pain of recovery be worth it? will i breathe easily after? or will i die anyway?
I wake up in cold sweats and am then awake for hours panicking. Then in the morning im to tired for pancakes, im to tired to live. The daily regime of treatments and pain is my reality.
No dog walking, no basic day to day living like most people, to tired to get out of bed, to tired to get fresh air. When i do go outside i feel like a tiny person in such a big world its noisy and busy and quite daunting. I dont know where to go, I dont know where i belong... so i go and hide in the safety of my bed again, the same bed that is also my prison. I dont know where i want to be or what i want to do.
The idea of living normally is just a daydream. To get up in the morning, go to work, go food shopping, mix in the outside world is like a foreign world to me i dont feel part of life anymore.
I have nothing to talk about with anyone as not much happens in my bedroom and what goes on in my sub conscious mind is to daunting to speak about so i say nothingWould a transplant solve any of this, would it give me the strength and the health to function, to go outside, to get a job or go shopping without feeling worried and scared. Will it solve my fear of what may happen, will it give me a lease of life to go to college and do the things i want to do?
Or will the transplant not work, will i die on the table, will my body reject the new lungs, will things be no better even after i put myself through such major surgery..
Will i even get listed if i go for a referral? Do i want to be listed?
I have said in my last few posts my mind is scrambled and i think by reading back on the post i have just written it is still very scrambled. I dont know how to start to unscramble it. I dont know who to talk to, or what to say, being opposite someone speaking words seems so much harder and all the more real than thumping at the keyboard as my feelings come spilling out through my finger tips.
I'm just so lost....I dont know what else to say
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