Hello Fellow
Traveller
My name is
In early 1995, I visited my gynecologist for an annual check-up and I
asked whether my itch may have been due to a build of bile salts. He suggested that I have a Liver Function
Test (LFT). On receipt of my results, he
was amazed at my heightened readings in many of the areas, particularly my
gamma GT reading which was nearly 600 when it should have been less than
65. I was referred to a
gastroenterologist who, on hearing of my presenting symptoms, diagnosed within
minutes that he thought the problem was a life threatening liver disease,
called Primary Biliary Cirrhosis (PBC).
He prescribed medication, Destolit, (later changed to Ursofalk), which
he advised would not cure me as they did not know what caused the disease,
although it was thought it may be due to a breakdown in my auto-immune
system. Ursofalk would slow the
deterioration of my liver and, hopefully, would postpone the need for an organ
transplant for a few more years.
Together with my LFT results, I visited him bi-monthly so that he could
keep my condition under review. Within
that first year of diagnosis, I had visited the Liver Transplant Clinic at
Royal Prince Alfred (RPA) to enable the Clinic to meet with me and obtain some
details. However, I agreed to remain
under the care of my own gastroenterologist until my condition deteriorated
sufficiently to warrant being placed on the liver transplant list. I didn’t find out until a few years later
that I was already in Stage 4, the final stage of my illness, at the time of my
initial diagnosis. On being diagnosed
with PBC, my initial reaction was one of shock and I was scared with having to
face my own mortality. However, I knew
that I had to remain positive and have complete faith in medical science and my
medical team.
Due to the effectiveness of Ursofalk and Questran Light in keeping my
condition reasonably stabilized, I continued working until March 2000. Right up to the time of my transplant, my
energy levels were OK, although, once I had retired, it was wonderful to sneak
an afternoon nap, particularly if I had an evening commitment. From mid-2000, I had quite heightened LFT readings
and my skin and whites of my eyes had gone a distinct shade of yellow. Finally, in November 2000, I was referred to
the Liver Transplant Clinic at RPA. My
Bilirubin reading was then around 170.
After meeting with the Liver Transplant Medical Specialist, I underwent
a comprehensive range of tests to ensure that I was a suitable candidate for organ
transplant. Once I was given the “all
clear” on those tests, I was placed on the “activated” list and told to expect
a phone call at any moment although it could also take months before a suitable
donor organ could be found. For the
first month, I was a prisoner of my phone, as I ensured that I was always
contactable and did not travel anywhere that was more than two hours drive from
RPA. Then I realized that I had to
reclaim my life rather than have it dictated to by a phone call, so a semblance
of normality returned to my life.
However, the reality that I was finally in line to have the transplant,
although expected for so long, took the wind out of my sails. While I knew the Transplant Team’s “track
record” was second to none, I was also aware of the inherent risks associated
with the procedure. My family and
friends were wonderfully supportive as were the professional staff at the
Clinic but the transplant is something that you yourself have to get your head
around. That is, the transplantation
journey is uniquely individual to each of us.
I found the Pre-Transplant Education Day and other sessions arranged by
the Transplant Clinic where I met most of the people associated with the
procedure to be extremely informative and re-assuring.
In early 2001, my spirits remained fairly high as, fortunately, I still
had enough energy to maintain a few of my interests, going to language classes
and the theatre and socializing with friends.
However, by mid-2001 (and “that” phone call still hadn’t come), my
condition visibly worsened and my quality of life was diminishing. I had developed a persistent cough, which
despite the efforts of a Respiratory Specialist at RPA, would not go away and
my Bilirubin started to shoot through the roof------it was around 430 when I
finally got the call from Graham Kyd on September 11, 2001------a day that
dramatically changed me and the world forever!
The phone call from Graham saying that they may have had a liver for me
elicited such a range of emotions---from tears of relief that the call had
finally come, to feelings of fear and apprehension as to what lay ahead, and,
finally, to an acceptance of my situation and a realization that I was ready,
whatever happened. The waiting in
Emergency and the preparation for surgery went quickly and appeared somewhat an
anti-climax after the nine months of waiting on the “list”.
The surgery was complicated (so they tell me) but after about 15 hours,
I was wheeled into Recovery with my new liver already functioning. After four days in Intensive Care, with my
stay there extended by problems relating to a massive allergic reaction to
surgical tape, I was sent to the Liver and Kidney Transplant Ward, where I
remained for about four weeks. By the
sixth day after surgery, I was showering on my own and walking up and down the
corridors to get my lymphatic system working more efficiently and for exercise. While feeling stronger with every passing
day, my recovery took longer than expected.
My LFT tests were erratic so they would not disconnect the bile bag and
my wounds were not healing as well as expected.
Finally, on October 11, I was discharged.
Once home, it had been arranged by RPA for the District Community
Services nurse to come by every other day for about a month to dress my
wounds. After about five weeks, I
returned to RPA to have my T-tube removed, so now the only physical evidence of
my transplant is the “Mercedes-Benz” tri-star logo and a few drainage tube
scars on my torso.
Since my discharge from hospital, I have felt wonderful, both physically
and mentally. The four years plus since
the transplant have seen me resume a broad range of activities, from attending
language and art appreciation classes, to spending time quietly reflecting and
savouring the moment. I have also been
fortunate to have done some overseas travel in that period and have had no
difficulty obtaining travel insurance.
Only recently, I spent three weeks on a ship which included five days
visiting the remote location of
Moreover, over that period, my LFTs have shown little or no rejection
and while I am still taking relatively high doses of medication, there have
been few side effects. My yellow complexion
virtually disappeared by about the sixth day after surgery and while there was
some initial difficulty gaining weight, that has not been the problem for the
past three years plus! While there has
been some necessary changes to diet etc and lifestyle, I wake each morning and
think how blessed I am to have been given the ultimate gift of life. Finally, I just wish to say that this journey
of transplantation has been such a rewarding one for me, in terms of personal,
emotional and spiritual growth. May you
also reap such bounties and keep positive!