Robert - Post-transplant
Leading Up To The Call
I was lucky in that I had nearly 3 or 4 years of stable health before I had to go on the Transplant list. In 1998
the Doc's said to me, if I carried on as I was (working full time etc.) I would be dead in 3 years. So it was
reality-check time. I moved home, gave up full-time work and my job became looking after my health. During this
period I always had the question of "TRANSPLANT" over my head, but I felt the time wasn't right, although according
to the numbers (FEV1 & FVC) I could have gone on the list at any time.
I just wasn't prepared mentally. I feel very, very fortunate to have had this time because it really prepared me
for what I was to face, whether Tx was for me and what the alternatives were. I soon came to a conclusion, I had to
have a transplant or not have any sort of future and I didn't want that to be the case. I still have plenty of
living to do. So on 17th December 2003 after a week or so of Blood Tests, Lung Functions, ECG's etc. I was fortunate
enough to be accepted onto the Active Transplant List. I was given my pager and told about the protocols that were in
place for when I got "THE CALL".
I always said WHEN I got a transplant and not IF. I always believe that I would get one, I had to. Even though my
body was failing me I had to keep mentally strong. My belief in getting a transplant kept me going. Don't get me
wrong, I had my bad days, very very bad days, but you just have to struggle through them and make the most of, and
hold onto, the good days. I always made myself smile at least once every hour, even if I didn't feel like it (might
sound a bit bonkers, but it was a coping mechanism for me). During this time I came to accept death as a part of
life as it now had become a very real possibility for me.
I felt petrified at some times but then I came to have an inner calm. I had done as much as was humanly possible to
keep well, my full time job (crap pay, very little perks and very long hours). Whatever was going to happen was out
of my hands. I had to accept my fate whatever that may be. An essential part of helping me cope through this period
was my family and friends and also the people I got to know through the CF website Bulletin Board. I got unconditional
love and support when I was at my lowest ebb, some of those people are sadly no longer here, but I have forged a
strong bond with the others that are still "fighting".
It was time!
I only had one false alarm, which was on Boxing Day 2002, 9 days after I went on the list; it was low battery in my
pager!!! All throughout 2003 I was an in-patient more than I was at home and I was willing 'The Call' to happen, and
on the night of Wednesday 29th October 2003, it did. I was in hospital at the time and I collapsed when I got the
call, this was it. Got in the ambulance and met my family at Harefield Hospital. WHAT NOW?????
Got to the hospital, full tests were carried out (bloods, ECG, xrays etc…), then a period of waiting ensued until I
got the final OK for my operation. That was the most surreal experience of my life, phone calls to friends and
family to tell them the news. And then I added "see you when I wake up", not "goodbye". An emotional time but I
always believed that I would get the operation and whilst waiting, I just had an inner peace, no real panic. The
situation was now totally out of my control. After about 6 hours, the TX co-ordinator came in and said "Let's roll,
it's happening!!" So onto the trolley and final "so longs" to the family. Then this was it, just ME, GOD and the
SURGEONS.
Two days later I woke up in Intensive Care and I couldn't really focus on what had actually happened. I was still
heavily medicated but I had an underlying feeling of joy, gratitude and relief. Two days after that, I was taken out
of Intensive Care and onto the ward and this is where the hard work was to start.
Recovery and Hard work!
Pain and tiredness was what I went through for the first week, the after effects of the major trauma my body had been
through, and the PHYSIO TERRORISTS were soon on my case. Up out of bed 3 days post-op, breathing and stretching
exercises straight away to begin to fulfil the potential of my new lungs. Even my very first breath was like no
other I had taken - no tightness, no wheeze and no cough. A weird sensation of being able to breathe deeply, it felt
very unusual/alien to me as if it wasn't right, something was wrong!!
But there wasn't, that is how it felt to breathe normally and healthily. What a bizarre, but also a very emotional,
sensation. Week by week I became stronger, regaining my appetite, in fact amazed by my increased senses of smell
and taste. Also, beginning to look forward to my twice daily exercise sessions with the physio. It then came to talk
of home and I was very nervous but also excited. Was I ready? How would I cope without the immediate support/response
of the team? But I then reassured myself that I should put my faith in the doctors, they must know when I am ready,
after all, their judgement and decisions have been right so far. Discharge talks, do's & don't's of what to eat etc
…then home. Oh my GOD!! I have had a very difficult 5 weeks (including one bout of rejection), but now I am back home, ready to
start living my life again.
Well here I am now and I Thank God for every day that I have. I am only too aware of how fortunate I am to be in
this position, each day is a blessing. I have been given the opportunity of a second chance at life, which a precious
few get. My lifestyle has dramatically changed and most importantly my perception of myself. I have gone from a
terminally/chronically ill person not being able to look past the next day, to being healthy and able to plan for a
future. I have been given a chance to LIVE my life again, to do all the things I dreamt of, and to me that is the
most special part of what I have been through. I regard myself to be a very happy person, because all I have been
through in my life has helped to shape who I am now as an individual. I have no real regrets and don't look back or
dwell on things I could/should have done. For me, now, I have a whole new future to look forward to.
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