Andrew - Post-transplant
The Build-Up To Assessment
To be told that the time had come for me to consider a transplant was a shock. It was obvious to me and my family
that I was not well and had been struggling for a very long time, but to hear the words "officially" still made my
heart miss a beat! I suppose to be faced with such an important and life affecting process will do that, in spite
of the fact that I knew a number of people who have already had transplants.
I went on the waiting list late in the summer of 2000 having been assessed at my hospital, Royal Brompton, earlier
in the year. I don't really know why I waited to go on the list as I was told straight away after the assessment I
was suitable. Maybe part of me was scared about the prospect of such a major operation and another part of me wanted
to "get my affairs in order" - at least it seemed like a sensible reason for not going on the list immediately! In
the event I spent 2 or 3 months twiddling my thumbs until I was asked by Prof. Hodson at a clinic visit to come to a
decision. Of course I said yes...and so I came into Lind ward to complete the formalities, get my bleep and see the
surgeon, Mr. Pepper, to get measured up and have a final chat. Then the wait began.
Life continued for me as it had done with regular courses of IV antibiotics and all the other stuff one does to keep
the ravages of CF at bay. By the end of the summer of 2000 my need to use oxygen had increased dramatically. Until
then I had been using it overnight and on exertion, now I needed it 24 hours a day, 7 days a week. I became
permanently attached to the oxygen concentrator which chugged away in my kitchen. That was when I got a real sense
of what I was dealing with, my lung function was very poor and every simple thing many take for granted had to be
planned in detail.
I had one appointment to see the team at Harefield Hospital during 2001, an arduous visit as I was feeling poorly on
the day, but at least I had an idea of the surroundings where my transplant would take place. I tried not to think
too much about whether the call would ever come but my bleep did go off a few times for no apparent reason which did
get us all going at home!
I get "The Call"
Finally the call came on the afternoon of 21st November 2001. I was asleep and my Mum answered the phone. Aine, the
transplant Coordinator asked to speak to me. Mum asked to take a message thinking it was just about another
appointment to visit the clinic at Harefield. Aine insisted so Mum got me to the phone and it was then I heard the
words "would you like to come for a transplant?" I must admit to being a bit overwhelmed as well as sleepy still so
asked Aine to give me 5 minutes. What was I thinking! She phoned back and I said "Yes" so the wheels were set in
motion. An ambulance was arranged through my GP and phone calls were made to my sisters. We gathered up my bag and
medicines and anything else we considered useful to be ready for the ambulance. Once we were on the move I noticed a
sense of calm in me. To be honest I don't think I had the energy to get excited or panic but it did help the journey
pass comfortably.
We arrived at Harefield around 8.30 pm and I was taken up to F East Ward and into Room 13. My mum tried to hide the
door number from me but I'd spotted it, no matter, I'm not a superstitious person anyway! The nursing staff made me
welcome and went about helping me to prepare for surgery by doing observations, swabs and samples. By this time I had
become concerned that my blood sugars were getting low, CF related diabetes is never far from the mind! I don't
remember how we resolved that situation but we did. The Doctor came and spoke to me, explaining the risks involved
with such a major operation and took lots of blood from me too. I signed the consent forms including the part which
allowed my heart to be used for a transplant too. I had previously agreed to this "Domino Transplant" procedure.
Time seemed to fly by and before long word came through it was almost time for theatre. I was as ready as I could
possibly be.
The theatre porter arrived with the trolley and off we went. It's strange as everywhere is quiet, it is after 10.30 pm
and it is dark outside. There are 4 of us in convoy, Mum and the Sister from the ward followed behind. When we arrive
at the theatre doors I say cheerio and see you real soon to Mum, I hand over my glasses and in I go. Inside I am
greeted by the anaesthetist and we have a little chat, he asks me what I was looking forward to doing once I am up
and about. He made me feel more relaxed which helped as he put a venflon in. I sense movement around me but don't
have my glasses so everything is blurry. I wished I could see more! An injection is given through the venflon and I
drift off. Mum heads back to Room 13 on F East to wait.
My operation went on through the night of 21st/22nd November 2001. I was approaching my 39th birthday and it was the
greatest gift I could ever hope to receive. I will be eternally grateful for the gift made by the donor's family.
My Mum is informed by the doctor at 7.15 am the next morning that I am back from theatre and that she can see me
soon. She is allowed in at 8.45 am to see me. I am sedated and won't be awake for 48 hours.
The Road To Recovery
Saturday comes and I'm waking up, I hear voices talking to me. The ventilation tube is removed and I am breathing
unaided. It is hard work but still feels great. All sorts of thoughts come into my head. I don't have any pain that
I recall, but I'm sure the medication I'm on helps with this. I have my share of chest drains and other paraphernalia
attached to me so don't feel the need to move - even if I could. The nursing staff gets on with what they have to do
for me explaining things as they go. For the first couple of days I don't remember much. I see my Mum, doctors,
nurses and physio's too. A trickle of relatives and visitors come to see me but they are only allowed to stay for a
short while. I'm feeling brighter, but still confined to bed. The anaesthetic is making me see Mickey Mouse, Peter
Pan and Captain Hook floating around my head. The funny thing is I am convinced they are really there as part of the
lighting. I spend ages trying to persuade everyone that they are there. I'm sure the nurses are used to that
happening but when my Mum tries to assure me there's nothing there and it's just a side effect I get grumpy! Sleeping
isn't easy so I tended to nap for spells. I get ice-cubes to chew on to keep my thirst at bay. They do the job but
make me feel cold, too many and I start to shiver so then I need extra blankets to warm up again.
The physio, who I knew from the Brompton, decides its time for me to get up and sit in a chair. Lots of effort and
careful manoeuvring sees me liberated from the bed if only for a while. My legs feel like jelly which surprised me
for a second, caused by the excitement of getting out of bed! I do feel I'm making progress though. Mid week I get to
eat my first meal since my operation. I never thought cornflakes could taste so nice! It was a bit tricky eating them
though as I still had a naso-gastric feeding tube in place. But it was removed soon after as it was clear I no longer
needed it.
At the end of the first week I move from Intensive Care to E Ward into a room near the nurses' station which is
another big step in the progress I feel I'm making. During this time the various chest drains and all the other
things that I had attached to me during my operation are removed. My exercise routine is stepped up; my legs
especially need lots of work, so an exercise bike was brought in for me to use. I'm walking around now, using my new
found freedom to wander around the ward. Silly things like having a bath are a real pleasure. The daily routine of
various tests go on unabated. Lung Function tests are introduced using a mini-spirometer. Soon I feel strong enough
to walk to the different departments for my tests. My legs feel like they are getting stronger but fluid retention
is making them uncomfortable and my ankles are puffy.
It was winter so one thing I noticed was the cold. My feet were always freezing so I found woolly socks helped to
warm them up as did foot massages. My appetite was very good by this time and I was gaining weight nicely. I found
I enjoyed food a lot which was something I hadn't done for a long time prior to my transplant.
I celebrated my 39th birthday closely followed by Christmas and New Year and I loved every minute. My only setback
in this time was just before Christmas when fluid had built up around one of my lungs. A small chest drain soon saw
to that in the space of a week or so. It managed to shift a couple of litres, I felt more comfortable and that helped
improve my lung function too! By this time I am walking up and down the corridors to the various departments for my
daily run of x-ray, lung function and E.C.G tests, I quite look forward to the walks in truth even if there are no
tests to be done - I was walking for the fun of it!
Now I'm thinking about home. I have had a couple of room changes and am much further away from the nurses' station,
a sure sign that the front door and home can't be that far away. I have had my discharge talk where a member of the
nursing staff goes through all the dos and don'ts of daily life post-transplant. Sure enough about 2 months to the
day from my operation I get the all clear for home, WOOHOO!!! I hadn't actually stepped outside since the night I
arrived but the journey home was a wonderful feeling and experience, rather nerve-wracking too though!!
2 ½ years on life is very good, long may it continue!!
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