Mommy, if you die can I go with you? – Free Online Library Essay

mommy, if you die can i go with you?



The holiday season of 1979 was less than merry for Steve and
Charlotte Harkness. On Thanksgiving, Charlotte nursed an extremely sore
neck gland that had failed to return to normal size after her
late-summer bout with the “mumps.’ She attributed her
stiffness, fatigue and discomfort to the demands of mothering a lively
pair of two-year-olds– her natural son, Keith, and her adopted
daughter, Jill.



The week before Christmas, all personal concerns were dropped
completely. A late-night phone call brought the news that Steve’s
brother-in-law had been killed in a coal-mining accident in southern
Indiana. By dawn, the two Harkness toddlers had been shuttled off to
the homes of friends, and Steve and Charlotte were speeding toward
Oakland City.



On Christmas Day, Charlotte, back home with the two children, felt
certain she was “coming down’ with the flu. Steve was still
helping his relatives adjust, so Charlotte, hoping to ward off the
virus, went to bed early. She awakened during the night, however, and
was so faint that she could barely wobble from the bed to the bathroom
and back.



When Charlotte Harkness reopened her eyes early on the morning of
December 26, she knew that something was terribly wrong, but she could
not have guessed that the events of the next few hours would so
dramatically alter her life. Charlotte was experiencing the first
symptoms of an insidious liver ailment called primary biliary cirrhosis,
and her often-to-be-called-upon courage was getting its first big test.


“I was so weak that I couldn’t sit up,’ Charlotte
recalls, “and the nausea was incapacitating. Luckily, the phone
was within reach, so I frantically called a friend to come pick up the
kids.’ Charlotte had settled back in bed for less than ten minutes
when she got the scare of a lifetime. “There’s no delicate
way to describe what happened,’ she says. “I began,
literally, to heave blood all over the sheets– huge, dark puddles of
blood.’



Fortunately, Charlotte was able to call her family doctor. He told
her to call an ambulance immediately. Fearful that she wouldn’t be
able to get to the door to let in an ambulance crew, she instead dialed
a neighbor who had a house key. “After that,’ she recalls,
“all I remember is being carried in a blanket to my neighbors’
van. The next thing I knew, I was in a hospital trauma room. Hours
later, I remember opening my eyes in intensive care and seeing Steve
standing over me.’



Charlotte Harkness’ nightmarish holiday was over, but her
ordeal as a victim of liver disease was just beginning. At only 31, she
was one of the youngest women ever diagnosed with the disease known in
medical circles simply as PBC.



“Looking back,’ Charlotte says today, “I sometimes
wonder if I could go through it all again. Yet I know there must be
hundreds of people just like me– many with diseases with different
names–who need to know that they can continue to enjoy life despite
necessary medications and treatments. They need to know that life
needn’t come to a halt just because of an unexpected
diagnosis.’



For Charlotte, the eventual diagnosis actually came as a relief.
“From that bleak December of 1979 until the following June, we
endured so much,’ she explains. “All of the uncertainty was
almost more scary than the ultimate knowledge that I had PBC.’



One night a week after being dismissed from the hospital, for
instance, Charlotte woke up, pained by the same enlarged neck gland that
had plagued her the previous autumn. “In the wee hours of that
particular night, I finally cried,’ Charlotte confesses, “but
still more out of frustration than fear.’



Early the next morning, the gastroenterologist monitoring
Charlotte’s liver condition arranged for her to see an ENT specialist; the following day, Charlotte was in surgery as doctors
looked for a cancer called Hodgkin’s disease.



“I felt such relief when the tests came back negative,’
Charlotte says, “but my life was still in shambles. Here I was, in
and out of the hospital, with a husband and two little kids at home, and
no one seemingly able to tell me what was wrong. Meanwhile, my third
miscarriage and a neighbor’s fatal accident only added to our
misery.’


Finally, in June 1980 Charlotte got some long awaited answers.
“My gastroenterologist called Steve and me in together and told us
that he was almost certain that I had PBC. Once we had bombarded him
with questions about the nature of the disease, we knew the news
wasn’t good,’ she admits, “but he did tell us to consider
a new drug being studied at Mayo Clinic that might slow the progression
of the illness.’



After careful thought, Charlotte decided the drug-study program at
Mayo meant she could play a role in her struggle for survival. In
August 1981, therefore, Charlotte Harkness made her first trip to the
Mayo Clinic in Rochester, Minnesota. She underwent four days of
rigorous examinations and learned a great deal about primary biliary
cirrhosis.



A chronic disease most frequently afflicting postmenopausal women,
PBC gradually destroys certain bile ducts within the liver. The
symptoms are varied and often late to appear; severe itching (pruritis)
and fatigue are among the most common. “Eventually,’
Charlotte explains, “the scarring affects the liver itself and
leads to cirrhosis, a condition that prevents the liver from functioning
normally and inhibits blood flow. Too often, people think of cirrhosis
as an alcoholic’s disease, but many liver disorders can lead to
this serious deterioration.’



Charlotte was diagnosed at Mayo as entering the third stage of the
fourstage disease. She became a participant in a federally funded
drug-study program of D-penicillamine, a medication used to reduce the
body’s level of copper. (PBC patients can’t adequately
metabolize copper.) Charlotte was also placed on a disciplined,
low-copper diet, which denied her such common delicacies as chocolate,
tea, syrup, nuts, beans, shellfish, mushrooms and coconut.



In April 1982, Charlotte returned to Mayo for her first six-month
checkup. Doctors assured her she was holding her own. By her November
visit, however, her difficulties were again multiplying. Since summer,
she had experienced occasional upper-gastrointestinal bleeding, two
major gall-bladder attacks and daily nausea and cramping. At Mayo,
doctors theorized that the enlarged liver had caused the gall bladder to
become disengaged, a theory that explained why they couldn’t locate
it even with ultrasound.



Since travel was out of the question, a Mayo surgeon removed
Charlotte’s gall bladder. Shriveled and knotted with stones, it
was the obvious culprit in her most recent discomfort. Her primary
disease had also progressed, however–Charlotte was teetering between
the third and fourth stages of PBC.



The following month, Charlotte’s local gastroenterologist
decided to schedule her for plasmapheresis, a plasma-exchange process
that separates red blood cells and plasma, filters out the green,
bileinfected plasma of the liver patient and replaces it with clear,
normal plasma. The pheresis procedure takes about two hours and costs
approximately $1,000 per treatment. It relieved Charlotte’s
chronic itching but caused her additional concern about “a new and
unwelcome feeling of dependency on a machine.’



In November 1983, Charlotte again returned to Mayo, her skin
blistered from a reaction to the D-penicillamine and her itching more
persistent than ever because she had weaned herself from the pheresis
machine. Doctors told her that her routine liver biopsy was no longer
necessary now that she was an advanced PBC patient. Because of her side
effects, she was also retired from the D-penicillamine study program.



Bouts with mild internal bleeding marred Charlotte’s spring
season, and by late summer 1984, she was openly worried about the
general state of her health. Her liverfunction scores had been climbing
for several months and the stubborn seepage problem had kept her
hemoglobin count low. As she feared, her visit to Mayo in August was
not a pleasant one.



“My doctor confirmed that I’m now in the fourth stage of
PBC,’ Charlotte explains, “and he admitted that he was
“alarmed’ by my rate of progression. For the first time, the
need for an eventual liver transplant was seriously discussed–and as an
indication of the gravity of things, when my life expectancy without a
transplant was predicted, my husband literally darted from the
room.’



Charlotte can certainly relate to Steve’s need for escape.
“When I first saw a PBC patient in end stage, I wanted to
run,’ she declares. “Maybe I’m just vain, but I remember
thinking, No way am I ever going to look like that.’



Right now at least, she doesn’t. Her skin does not appear
jaundiced, and her eyes show only traces of yellow. Charlotte’s
life is presently so good, in fact, that the diminutive blonde hates to
consider the uncertainties of a transplant. “I worry,’ she
confesses, “that if I wait too long, my health will decline enough
to harm the transplant’s chances. Yet who wants to dwell on the
risks of a liver transplant when a halfwaynormal lifestyle is still
possible?’



For PBC patients, depression, understandably, is also a problem.
“Psychologically,’ muses Charlotte, “what really hurts is
knowing that your condition is only going to get worse. Yet I try not
to dwell on how or why I got PBC.’



Slight enough to pass as a Churchill Downs jockey, Charlotte more
than compensates for her small stature with her gritty determination to
take all her problems in stride. “Maybe I’ve never really
accepted my disease,’ Charlotte contends, “but I have been
realistic enough to reckon with it. Otherwise, I couldn’t function
normally and continue to do the things I enjoy–working on house
projects with Steve, going to movies with my children, reading, doing
needlework, playing golf and visiting amusement parks–I love
rides!’



Charlotte’s priority is motherhood. She has been especially
quick to reassure the children. “Keith, for example,’
Charlotte explains, “is very suspicious about any trips I make to
the doctor or the hospital. He remembers my earlier hospitalizations,
and he associates any absence with those prolonged stays away.’
Charlotte now includes them in her medical routine. Both Keith and Jill
have accompanied their mother to the lab, and Keith has “sat
in’ on an office appointment. Last August, the entire Harkness
family made the trek to Mayo.



“Children that age are like sponges,’ Charlotte observes.
“You can talk all you want in whispers, communicate in
postkindergarten code– and then they still reveal some amazing
awareness that they’ve soaked up.’ She sighs. “I think
I finally realized that we were all sharing the same wavelength when
Keith looked up at me one day and solemnly asked, “Mommy, if you
die, can I go with you?”



Charlotte says that Keith has since found great reassurance in
witnessing firsthand that the doctors do nothing to hurt his mother.



Steve, however, is still reticent about Charlotte’s illness.
“He won’t admit that he doesn’t accept my sickness,’
Charlotte notes, “but I can sense his difficulty.’ Charlotte
adds: “Friends sometimes wonder how he can appear so indifferent to
my symptoms, but I personally think that he refuses to give the disease
any credibility. Maybe his insistence on normalcy is even to may
advantage. If he coddled or pitied me, I’d probably tend to wallow more in my own self-pity.’



Yet Charlotte does admit to some loneliness. “Steve
doesn’t have PBC, so I can’t expect him to relate to all of my
feelings,’ she explains. “When my closest fellow liver
patient died more than a year ago, I really felt an agonizing void. As
the president of Indiana’s chapter of the American Liver
Foundation, Anne Mullendore had worked tirelessly on behalf of local
liver patients and, despite her own illness, provided a sturdy shoulder.
When you told Anne you were tired, she knew exactly what tired meant.



“One of the worst aspects of the more uncommon diseases is the
lack of an available support network,’ Charlotte continues,
“the lack of ready access to other victims, other people who can
personally identify with your doubts and fears.’ Yet Charlotte
quickly credits the American Liver Foundation in Cedar Grove, New
Jersey, for its help to victims of unusual liver diseases.



“The foundation goes all-out,’ she explains, “to
provide educational literature, leads about doctors and treatment
centers or just a sympathetic ear when needed.’ Charlotte adds:
“I gratefully acknowledge Thelma Thiel, the executive director of
the foundation and the mother of a son lost to liver disease, for
keeping me on my toes with regard to my own illness. A great believer
in preparedness, Thelma has been urging me for two years to go to
Pittsburgh to get my transplant evaluation. “Do it while
you’re healthy,’ she insists.’



“Pittsburgh,’ or the University of Pittsburgh School of
Medicine, is the premier American facility for liver transplants and the
home address of the world-renowned liver-transplant surgeon Dr. Thomas
E. Starzl–“The best,’ says Charlotte Harkness. Yet the
distance is great, and the faces there unfamiliar. Charlotte hopes a
transplant program at Mayo will be in place by the time she needs it.



“Steve, I think, believes that the transplant is still way
down the road somewhere,’ says Charlotte. “I believed that it
was at least five years away, but after my August visit to Mayo,
I’ve had to revise my calculations. Right now, I’m waiting to
begin antirejection therapy with a controversial drug called
Cyclosporin, which some doctors think may also slow the progression of
the disease.



“The liver is the largest organ in the body,’ notes
Charlotte, “and it performs a thousand vital functions. Its
transplantation is more complicated than that of a heart or of a
kidney–and here I sit, wondering if I can handle it.’ She pauses,
adding: “I really don’t dread the pain so much. I frankly
worry more about the effects of the drugs that have to be taken after
the transplant.’



She also worries about the costs: “It’s truly outrageous.
How many American families have $200,000 or more stashed away for a
liver transplant? And how many American families have an insurance
policy that will cover it? Right now, most victims are left dangling.
The medical community has fought to prove that liver transplants are
therapeutic, but the insurance lobbies insist that they are still
experimental.’



Charlotte manages a wry grin: “If I were a sad-faced
7-year-old, hearts would go out to me. I can’t expect the same
reaction for a 36-year-old housewife. Yet somehow I know that people
will do what they can.’



Neighbors, awed by her fortitude, don’t hesitate to call her
courageous. “She seldom complains,’ observes one.
“Despite everything, she keeps coping,’ says another.



But Charlotte is fearful. “I have my apprehensions,’ she
admits. “After all, I know more or less what is ahead of
me–PBC’s progression, both systemically and cosmetically. I know
that I’ll need the best of both my faith and my will.



“Meanwhile,’ Charlotte reflects, “I think of the
possible good I can do if I help educate other people about a disease
like PBC. Unfortunately, most victims don’t even realize they have
it until it’s fairly well advanced. The other day, for instance, I
was transfixed by a cashier’s yellow, almost orange yellow hands.
I wondered if a liver problem was at work in that woman.’



Her spirit indicates she’s not ever likely to surrender
easily. “If I’m feeling low and Steve’s away, I’ll
fix dinner by candlelight for myself and the kids,’ she relates.
“I try not to miss any opportunity for special moments.’
Charlotte also keeps a journal and enters very personal comments to her
children. “If my life is interrupted, I want my thoughts and
feelings to survive me. I want to have my say.’



A heroine in her own neighborhood, Charlotte Harkness has been
nonetheless just another unknown fighter. Those who cheer her wonder
how she motivates herself for each new round.



Her response is simple: “I remind myself that depression can
do nothing to enhance my life. I’m like anyone else; I still
think, sometimes, that it’s all a big mistake–you know,
someone’s blood-test results mixed up with mine. But when I’m
being honest with myself, I know that I can waste time on self-pity–or
I can enjoy my family in the best way I know how.



“Because of my priorities, I can rest easy. No matter what
happens, no one will ever replace me, and my family will always be
certain of how much they were loved.’



Photo: Charlotte and Steve Harkness and their two-year-olds, Keith
and Jill, are just one of thousands of U.S. families living with liver
disease. Charlotte was diagnosed 4 1/2 years ago with primary biliary
cirrhosis.



Photo: “I did let the depression get to me for a while,’
says Charlotte. “Now, I just take one day at a time and try not to
let the future swallow me up.’



Photo: Charlotte’s lifestyle is presently so good (she loves
playing golf and going on amusementpark rides) that she hates to
consider the uncertainties of a transplant–yet she worries about the
possible consequences of waiting too long.



Photo: Dr. Thomas Starzl gave new hope to liver patients by
performing the world’s first liver transplant in 1963. Since then
568 patients (in North America) have received transplants. More than
half are still alive.

Leave a Reply

Your email address will not be published. Required fields are marked *