I had just moved into the San Lorenzo Valley area near Santa Cruz
in 1989, when a semi-routine blood check revealed abnormal liver
function (i. e., elevated liver enzymes). Hepatitis A and B were
eliminated, and I was told that I had non-A non-B hepatitis
"although by next year they'll have an antibody test for it,
and it will be called hepatitis C."
There didn't seem to be much I could do about it - and maybe it
won't be a problem, or at least "not for 10 years or
so." The only thing to do, in the case it developed to end
stage liver disease, was to get a liver transplant. Which at the
time, sounded like the worst thing in the world happening. My
image of liver transplantation was that it was extremely risky,
with six-month survival at something like 50%. Well, I was a
little out of date.
Over the next five years, it was mostly a wait-and-see approach.
My blood levels were monitored every six months; every year, I
had an ultrasound to see how my portal circulation was doing.
Portal hypertension was diagnosed. When the antibody test became
available, my diagnosis was confirmed, and my gastroenterologist
decided it was time for a liver biopsy. The report described my
liver as "pre cirrohotic," with signs of fibrosis and
necrosis present. At one point, my doctor told me he thought I
had a 75% chance of requiring a transplant, "but let's focus
on the 25% chance for now." Although I was anxious to
explore whatever thereapeutic approaches might be available, I
did not at that time educate myself about liver transplantation.
I did do a course of interferon, which was ineffectual.
During the year before I was listed (in September of 1994), I had
a series of gastroenterolgical complaints, most notably chronic
diarrhea and recurrent stomach (or biliary) colic.
As it happened, the development of a diagnosis end-stage liver
disease (ESLD) from these symptoms and other clinical signs was
only formed when my blood counts and clotting time went way out
of bounds. In reality, I had been suffering from the ESLD for
months. I later learned listening to other people's stories that
in general it seems that in general it is difficult to pinpoint
the stage at which ESLD has been established, and that even
though in retrospect I might have wished for an earlier diagnosis
- and an earlier listing - on average I suppose I was luckier
than many. End-stage liver disease describes the entire syndrome
that occurs when the liver begins to finally fail - a process
that can take several years, that can be somewhat managed
medically, but which, inevitably, leads to total liver failure
and death; the only therapy is transplantation. ESLD can be
caused by any number of factors, such as: chronic viral infection
(hepatitis B or C), alcoholic liver disease, autoimmune disease,
or due to congenital liver defect.
My overall health gradually deteriorated, and a combination of
ignorance, denial, and a desire to tough it out made the ultimate
diagnosis come a little later than it might have. In retrospect,
knowing what I do now, I see that I suffered from a number of
symptoms such as muscle wasting (due to impaired nutritional
function), readiness to bruise (due to impaired clotting
function), irritability and readiness to anger, and increasingly,
fatigue. From a clinical viewpoint, I was thought of as
"asymptomatic" for a long time - that is, I lacked the
gross symptoms of liver disease, such as ascites (fluid build-up
in the abdomen) and GI bleeding. The so-called
"subclinical" symptomology is subtler, but very real,
and very frustrating.
Finally, when having my blood tested for my annual physical with
my internist (who was in the same practice as my
gastroenterologist), it was learned that my blood count was 50%
of normal, that I had an enlarged spleen (that was
"sequestering" a large volume of blood cells) and that
I really needed to talk to the transplant team at Stanford.
At that time, the liver transplant program was still new, and
they had only performed about 35 transplants. When I had
previously been to the Stanford GI clinic (for the interferon
treatment), the program hadn't even started up. I was seen by Dr.
Garcia, who had seen me once previously when I particpated a few
years earlier in an (unsuccessful) interferon trial. He listened
to the catalog of symptoms, pointed out how gaunt my face was
becoming, and gently suggested that I might want to "think
about" being evaluated for a transplant. At the time, I
still needed selling on the idea, and didn't see how all the
symptoms tied together to indicate the onset of ESLD. One step
led to another, and the next thing I knew I was being evaluated
for transplant.
Within two weeks of my evaluation interview, I was back at the
clinic. I had developed terrible chills and fever, and a pain in
my lower back whenever I drove long distances (like the hour and
a ten minutes to the clinic).
You can mail David at e0yes@cruzio.com
or, visit his personal web page at http://www.cruzio.com/~e0yes