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(right_hand_side)The Website of the Heart and Lung Transplant Trust (Vic) IncThe Website of the Heart and Lung Transplant Trust (Vic) IncThe
{Following are excerpts from a newsletter that Andy King sent to his
friends overseas. Thank you Andy for allowing Sue Tamblyn to pass this
on for our readers. Editor)
G'Day
… The Biggest events in the last two years have of course been
the birth of our daughter Emma Claire and the matter of my small and
trifling lifesaving operation.
Bloody Hell! A Transplant!
So, I guess a bilateral (double) lung transplant came as somewhat
of a surprise to most of you! It's been on the cards for some time and
we had been planning our lives accordingly. Our first serious hint came
way back in July 2000 when, having moved to Sydney, I introduced myself
to the local Consultant to touch base with him regarding my health.
Having tested my lung function he broke the news that at under 30% of
normal I met the criteria for one.
The
fact that with my Condition I could one day require a lung transplant
was not news to me, however the fact that I was eligible there and then
was. This was quite a shock to Jo and I, and indeed to my UK Consulting
team too (Again, that I had a Consulting team in the UK might be a
surprise to some; such subterfuge! Explains my penchant for flu jabs and
keeping warm etc. eh?).
Now I had noticed whilst climbing mountains in Scotland earlier in 2000 that such an activity was a tad challenging, but hardly cause for major surgery. It would seem that presented with me, without knowing my history in detail, the chap from Sydney leapt to the conclusion that I had suffered a catastrophic decline; not really the case, rather that I had been able to cope extremely well with such a low lung function, though there probably had been a significant drop in the twelve months before coming to Australia.
Anyway,
we didn't like him much, and when we moved to Melbourne we got on with
the team much better; which was a good thing really because we would
come to rely on them very heavily.
So as time passed my lungs gradually got worse. Sydney wasn't
good for them, very humid, crap job, long hours. The opportunity arose
to move to Melbourne to join Jo's parents' family business (…) as their
CFO. We leapt at it; however it was complicated by my visa, which was
specific to … , having to be transferred to an intermediary company. The
health requirements meant that this was a protracted process and took
several months to go through.
We
spent fifteen months in Sydney, were there for the Olympics, and,
although I love the City … , we were glad to be moving. Melbourne is
great place to live, better than Sydney in my opinion; except for the
lack of icons such as the Harbour, the Opera House and the Bridge,
though the "G" might come close. Melbournians have an envious sibling
relationship with Sydneysiders in much the same was as Mancunians and
Londoners; each "knowing" that their city is better. Melbourne has the
Grand Prix, the International Comedy Festival, the Yarra Valley, decent
roads, the MCG, decent climate… I could go on, just plonk in something
like the Opera House and it would win.
The Saga of the Visa
The next big issue was for me to becopme properly eligible for
the operation. Though I had yet to reconcile myself that I was ready for
it I would have to change my visa status. ...
…
It wasn't until May the next year that, after supplementary evidence,
much worrying and the help of a federal MP, that I was granted
provisional permanent residence.
Decline
Life was becoming harder. My lung function was now hovering at
20%. I couldn't walk far without stopping out of breath, I was
constantly tired, I had lost a lot of weight, and (still) had an awful
cough. I was still working full time and attending the gym, but it was
hard work. There is a radio advert here at the moment for quitting
smoking which gives quite a good analogy and is in reference to the
final stages of emphysema (which I don't have); breath in - all the way,
then when you can breath in no more, force a bit more in. Then breath
out just that last bit. Force in that last bit again and so on.
Difficult? Another way is to only take one breath in five.
The
time had come for a decision. In June we decided to apply to go on the
list and the "Work up" was booked for July; this is where one spends
three days in Hospital and is subject to a plethora of tests. I was
suffering from (another) chest infection at the time and my lung
function dipped to only 16%. I had blood tests, x-rays, ct. scans,
dexascans, ultrasounds, more x-rays and more blood tests. Absolutely
fascinating. On the tenth of August the results of the work up came
through and we met with the team
To
our immense relief I was suitable for transplant and went on the list.
By then Jo was almost nine month pregnant, sometimes one is lucky
and receives "the call" immediately and it was a strange feeling wanting
the call but perhaps not until Jo had given birth! Emma was born at
15:10 on 18th August 2003 … in Melbourne. By now I was on Oxygen pretty
much all the time either as a portable cylinder or an Oxygen machine at
home; there are not many births where the Father and not the Mother is
on Oxygen! …
The next five months saw more chest infections and hospitalisation. I was attending the pre-transplant gym three times a week. Research has shown that post transplant prognosis is vastly improved if the strength and fitness can be improved prior to the operation.
The
sessions were conducted in the hospital under the supervision of
qualified physios, most of the patients exercised on oxygen but even
with this all of those exercising could be a theoretical "code blue" - a
code blue is called when a heart attack happens, or blood oxygen
saturation is below 90% (normal is 98-100%) and the crash team arrive
with the paddles! My sat's hovered at 88-89% resting and plummeted to
the seventies on exercise, even on oxygen and my resting pulse was about
120. All in all somewhat of a wreck!
The Call
The
call finally came … Jo took it, I knew it to be the one as she was
crying and smiling at the same time. I took a shower with special
antiseptic soap and then we made our leisurely way in to the hospital to
be prepped. We arrived around 10ish and the circus began. The staff on
ward 5E were really pleased to see me, congratulating us on our good
fortune on getting
a
good
match.
A nice young nurse shaved my chest and gave me my first doses of immunosuppressant medication. The registrar arrived checked me out; I asked her if I'd be able to play the flute after the operation, she said she didn't see why not and I said that was great because I couldn't before (Ho Ho!). Jo's family arrived around midday having flown at short notice from Queensland. … (my mother-in-law) asked that as I'd be under for some time had I considered asking for some cosmetic surgery as well.
Much hilarity! Unbeknown to me there were some last minute checks on the donor that were causing some concern to the team; organs are not dished out on a first come first served basis, rather blood types and tissue types are matched (these must be correct for major rejection to be avoided) and antibodies present are analysed; mismatches here can cause infection problems. It is not uncommon for people to be called in, going through all the emotions of that time, only for one or other factor to result in someone else receiving the organs.
We
had been warned that there may be several false alarms. The op' was
scheduled to begin at 2pm, but was delayed and it was not until half
three that I was wheeled to theatre with Jo and Emma at my side. I still
maintain that I had the east part, and always had (and will have). Jo
had to watch my steady decline, was aware of all the stats on my life
expectancy with and without the op, and for the next 6 to 8 hours would
have to endure the torture of complete and utter helplessness. All I had
to do was lie back and drift off to sleep.
Pure Theatre
There was more prep in theatre. I had an epidural put in, I was rather keen that it would be a good one given the size of the cut I was about to obtain. Apparently my back was more gristly than most with the anesthetist all but putting his knee into my back as my shoulders were held to give purchase from the front.
For the medically interested the epidural was beefed up by the addition of adrenaline, a new technique apparently. I had several “lines” inserted (two arterial in my wrists, six venal in my neck, put in for sampling blood gasses, administering drugs etc. There were others but I forget the detail), and electrodes on my chest for monitoring heartbeat etc.
My normal social worker, a fantastic lady, was unfortunately on holiday and her reserve decided to pay a visit. Nice thought but she was rather embarrassing, lord knows what the theatre staff thought, as she asked if’d like to try some relaxation techniques; frankly I was perfectly relaxed and was far more interested in the asking the surgical team about what was going on than joining in calming mantras. I
thanked
her for her concern, she left and I could get on with asking about the
most expensive machine in the hospital (in case the administrator came
round) or the one that goes ping ( the team were familiar with Monty
Python and knew to what I was referring). Seriously, talking to the team
was interesting and probably my
For the squeamish; skip this paragraph!
The incision, contrary to populat belief, is not up and down the
sternum as it is for a heart, but stretches from one armpit to another
under each pectoral and is known as a “clamshell”. The arms were tied as
on a rack, literally, and pulled, hinging on the spine the opening is
clamped open. One lung was clamped off, deflated and removed. A new one
was inserted, sewn in and partially inflated and began to breath for me.
The other one was then deflated and removed, the second new one sewn
into place and it was partially inflated and began breathing for me. All
surgical tools are accounted for and I was closed up and stapled
together (82 held the wound together to be removed a few days later,
permanent wires held together my sternum where it had been severed).
Apparently the op’ finished at half 11 in the evening I am told and I
was wheeled to ICU.
Recovery
Jo came and visited at about midnight to be presented with what looked like a dead body, yellowish grey from the iodine and cold as body temp was reduced to control bleeding. I first came to at about 6am. Intubated, communication was difficult, and I had to use a pen and paper which was challenging. The tube would be removed once it was certain that I could breath on my own having been taken off the respirator earlier in the morning. From this first moment of consciousness on I can truly say that my recovery has been nothing short of miraculous.
The tube came out later in the morning and I could speak. I could also look down and see my new trophy etched across my chest. I could also breath. By 4pm in the afternoon I was sitting NEXT to my bed supping chicken soup. Incredible. The ICU team joked that I was an imposter as I was alert, doing well, my sats were 97% and heartbeat 90. My visitors told me that my lips were pink again and not blue; I could see the difference in my nails which were now a healthy pink too. I spent 48 hours in ICU before I was moved to ward 5E.
This was very good going, I would have been out earlier but for some adverse liver function indicators. The lungs take time to inflate fully and where some notice a difference instantly I didn’t. It was on day 3 that I noticed that I could talk for more than short bursts without gasping for breath. In fact I could talk and talk and talk!
Over the next week or so my progress was again excellent. My medication
regime was impressive, about 80 tablets a day to start with, including
some pretty strong pain relief. I was lucky to avoid major
hallucinogenic side effects, though I did have the odd nightmare about
falling asleep and stopping breathing, as if my new lungs needed my
conscious thoughts to keep them breathing.
Going Home
After two weeks I was well enough to go home. Hospitals are all very
well but they are full of sick people and are not the best place for an
immunosuppressed person. The feeling of elation on the way home is
something I will never forget, all the thoughts of what would now be
possible, all the things that we would be able to do. To sleep in my own
bed was fabulous too. The next morning Emma woke at 6:30,
