Gaz - Pre-transplant
Leading Up To The Assessment
The first time transplantation entered my mind was in the middle of the summer between my 1st and 2nd years at the University
Of Kent in 2001. It was at this point that I started to have overnight oxygen through a home oxygen concentrator. This was
also the time I was diagnosed with having CFRD,
so things were starting to play on my mind health-wise.
I feel I dealt with the diabetes pretty well, i just saw it as another thing to add to my regime, and at that time, the sugars
weren't too wide-ranging. This meant only a little monitoring was needed. However, the use of the oxygen concentrator at home
and university had a huge impact on me mentally as well as physically.
Obviously the concentrator stopped the throbbing headaches I used to feel when I woke up in the mornings, and it also gave me
that extra bit of energy for the rest of the day. I look at my degradation in terms of my university years, as I feel it is
this which contributed most to putting me in the position I am now, i.e. waiting for a double lung transplant. I would term my
first year at uni as a good year for me. I attended most lectures and seminars (well as many as any first year student does, hehe)
and I went out with my friends at night, walking, and then staggering. :o)
My second year was the first year I had with the concentrator with me, and at first I felt embarassed about it when friends came
round, but they understood my CF from the first year and just saw it as another part of my treatment. I was very lucky with the
friends I had and do have. Only one of them smoked and this made social events a lot easier because he would disappear from the
group usually to save the smoke from me, a top bloke :o)
This was also the year I met my present girlfriend, Tiffany, and it was a lot for her to take on board. Not only was I dealing
with normal treatment, but a fairly new treatment myself, and she was willing to learn all about CF and the treatment schedule
I had. I could not have asked for, and cant ask for, a much more supportive partner, as most of you know.
Gradually over the second year of Uni, my health was slowly deteriorating, and I could start to feel it. The concentrator was
now being used, not only at night, but also at certain times during the day when i was getting very breathless. I had hit the
slippery slope of oxygen use. Slowly I would be using more and more, not through choice, but because I felt I needed it and
it made recovering from exercise that much easier.
In relation to my first year, I was going out less, only the occasional night, and my number of lecture attendances dropped.
However, I was lucky as I was studying a Computer Science degree, hence most of the notes were available online. This was a
good and bad thing. It meant I had easy access to them, but it also meant I could choose not to attend a lecture, which
decreased the amount of exercise I was then doing. This was also noticeable because I started to use my car on a more regaular
basis.
I was able to take my exams with the rest of the student population, albeit an exhausting task to get to the examination halls.
In the summer of 2002, I was still driving, and still using the oxygen concentrator mainly at night, but still during the day
at times. The summer mainly involved me looking after my health and visiting my gf as she lives a fair bit away. This lead on
to the 3rd and final year of my studies.
My final year at university started out ok, and I was ready for the mental and physical work needed for both the studies and
health. However, the year went from bad to worse and I eventually wasnt attending any lectures or seminars. Tiff would be
dropping off assignments for me, and I was becoming a recluse, apart from travelling to Tiff's to eat a proper meal (I owe
Tiff so much for forcing me to do that). By the end of the year, I was on oxygen 24/7 and I ended up taking my final exams
in the University sick bay.
It was during this year that my consultant suggested about going for a transplant assessment at the Royal Brompton. This was
suggested in the February of 2003, and I originally said no to putting myself forward for assessment, because I was adamant that
I would finish my degree first, a choice I wish I could now change.
I finally agreed to be put forward for the assessment in May 2003, and the referral came back for mid-august that year.
The Assessment
The assessment involves being admitted to hospital for 7-10 days usually while various tests are carried out. I was admitted to
the Royal Brompton hospital and the assessment was described to me after meeting with the nursing team, the doctor and other
members of the assessment team. Over the course of the admission, I had various tests including: chest x-ray, blood tests,
bone scan, dental check, ECG, echo of heart, ultrasound of kidneys/liver, urine test, 24hr tape of heart sounds and a bleep
test. There are a number of tests to undergo, although this is to make sure the body is ready for a transplant.
The team do not only assess the body's physical state but they also assess your mentality towards a transplant. After the
physical tests were carried out, I was told my body was suitable for a transplant (unfortunately, however, not everyone is, due to
different reasons) but luckily I was told mine was suitable and I was then asked if I wanted to be put on the active transplant
list after my case was discussed by the main Transplant Panel which meet every 2 weeks.
You may think I would have said yes straight away, otherwise what was I doing there having the assessment. However, I decided to
say no. I was given an information booklet about lung transplantation and I was also given a video to watch of people who were on
the list, and what their views were. After reading the booklet through and watching the video, I felt my mind was in "limbo-land".
Was I wanting to put myself through all this, in order to achieve a better quality of life? Looking back now, I wish I had said yes
straight away, but it isn't unusual for someone to say no at first.
I went home after the assessment, still having said no, but safe in the knowledge that if I changed my mind, I could email or phone
them and I could be brought back in to receive my bleeper and to finish off any last bits. I spent a week at home thinking, day and
night, talking with my family, with friends, eventually coming to the decision that my quality of life was so much less than before
and that a transplant would offer me the hope of enjoying life to the fullest again. At the end of the week, I emailed the Royal
Brompton and I was brought back in.
I received the bleeper and I was directed what to do in case it went off, and also told to keep the bleeper working by checking on the
batteries, and also to test it by bleeping it myself every few weeks. I was also advised to keep a night bag ready at all times, so if
I did receive the call, I could throw the bag in the car and be ready to go more or less instantly. They sent me home and told me to
wait to hear when I was put on the active list. A few days later I was phoned to say I had been formally accepted onto the list, and
from that moment forward I was 'waiting'.
The Waiting Game
Now we reach present day, and I am currently waiting for my transplant. I have been on the list now since November 2003, and have kept
myself mainly to myself at home. Obviously different people have different ways of keeping themselves occupied during a time which could
be weeks, months or years. At first, I must admit, I hadnt sorted anything out, and I just was trying to 'come to terms' with being on
the list. The amount of time you have for thinking is immense and therefore you think about anything and everything to do with what will,
might or could happen.
Being on the list for me at first was quite depressing. Night times became quite sad, emotional and sometimes teary times, even for a 21yr
old male! However, as time passes by, you start to come to terms with it all, and even take it in your stride. I sometimes even forget
that I'm waiting for a transplant. The best thing to do is to have something to get on with, to take your mind off of it. The constant
thinking isn't good at all, and nearly always ended up for me in a depressed self-pitiful mood....to which I swiftly kicked myself and
thought to myself, "don't be such a fool, deal with it!" However, some people say we're allowed to feel like that. That may be true to
a point, but feeling like that doesn't help you through it all.
I truly believe in the saying "a healthy mind, a healthy body" and I feel that lately I have lived by this, through the help from friends
and tasks which I now work at. One is this site, and it pleasures me a) to work on the site with Emily and b) to receive such positive
and rewarding remarks from visitors to it. Another is working on the online game im part of the admin team for, (Dark Age Of Wythia)
as this has introduced me to people all over the world. Basically I live my life through the net, which is, again, good and bad.
It's good because I get to meet and chat with many people and use the skills I have to develop something which is beneficial
to others. But it's bad because I'm always stuck in front of a computer and not out exercising and keeping my muscles moving, which
is of upmost importance. Keeping the body working and in use is vital to increasing chances of a safe transplant and also rapid recovery.
Anyways, enough preaching from me, this was just to give you an idea of what things were like for me leading up to where I am now, and
hopefully gives you an idea of the journey some of you may take. It's obviously different for different people, so dont take my account as
being what will happen to you. You are your own individual :o)
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