Over the course of the three
years that followed my diagnosis, PPH took its toll on my everyday life.
The symptoms and their consequence built up gradually. My world got
smaller. I could no longer manage my job as a realtor, a job I was
proud of and had worked hard at since 1988. I had to quit. I
applied for Social Security Disability Insurance. I visited doctors
instead of friends. I used a Disabled Person Placard to park.
Doing simple things became harder and harder.
I could not deal with
grocery-shopping trips. My husband took over.
One day in 1996, I discovered I
could not lift my vacuum cleaner. I gave up housework and hired a
cleaning service.
Living in a large, multi-story
house meant I had to climb twenty or so stairs every time I wanted to
change clothes. I moved to the downstairs guestroom. Laundry?
No way. My husband carried the clothes to the machines, loaded,
unloaded, carried stuff upstairs. In 1998, we sold our lovely
grand home and moved into a small duplex.
Physical or sexual
activity was terrifying. Any pressure on my chest or lowering of my
head below my chest made me feel as if I could not breathe at all. I
could not lift my arms over my head or bend over to tie my shoes without
gasping for air. After thirty-five years of marriage, I slept alone.
By 1998, I had lost nearly
everything that mattered to me: my career, intimacy with my partner,
sailing on our 42-foot Catalina sailboat, going to the movies, most of my
pre-PPH friends, and our lovely home. If these losses are not
impressive enough, consider the simple act of speaking. I was often
so short-of-breath, having an extended conversation was out of the
question.
My doctors and I discussed the
possibility of a lung transplant soon after diagnosis, but none of them
thought I would live long enough or be healthy enough to undergo such a
procedure.
In June 1998, four months after
receiving my diagnosis - my death sentence - I started the only FDA
approved treatment at that time for PPH, Flolan. Some will
argue this treatment is only life prolonging, but I believe Flolan saved
my life. Although it did not reverse or stop my disease outright, I
did improve a little and I was able to breathe a bit easier because of it.
But once I knew transplantation
was a possible option for me, I mentally “went for it all the way”.
I never doubted my decision. Often I had to be my own cheerleader
with doctors and other medical personnel. They never had the faith
in me that I had in myself. Transplant doctors don’t waste
donations. They won’t give them to patients unless they think they
have a good chance of recovery and are motivated to follow the regimen.
I was never afraid of the
transplant idea, even after hearing all the facts and figures. I met
several post-transplant patients and discovered they no longer suffered
from their disease. So, in May of 1999, I got myself signed up for
the program, and eventually my husband and I “got on board” with
my decision. I was certain I would be cured by the surgery.
For the past few years, my job
had been to stay alive and I had worked hard at it. I had
established a simple plan that seemed to be working for me. I
set little goals for myself. The first one was that I wanted to live
until we sold our big house and had moved into this little one. The
second was to live until I saw the movie “X Files”. Then, I had
worked hard to lose enough weight to be transplant listed.
Now that I was on the list, my
focus narrowed. The promise of a new lung was my primary
reason for being, my only real goal from March 22, 1999 to June 11, 2001.
I focused. I practiced positive thinking. A
post transplant patient I met in a support group by the name of Ray gave
me a small blue stone inscribed with the word, “Faith” to inspire me.
I carried it with me and if I felt a loss of willpower, I just held the
stone in my hand and believed again.
My wonderful family – my
loving husband, my two daughters and my sister - believed in me and helped
me focus. Their support meant the world to me and helped me keep
going through some very tough times.
On December 22, 2000, I moved to
a condo near U.C.S.D., two hundred miles from our little house, to wait
for transplant. My husband stayed behind to work leaving me alone to
wait. Being alone was very difficult, but I managed to stay
connected and positive. I spent my time on my computer
chatting with phfriends in the PHCentral Chat room. I quilted.
I watched about a million hours of television. I studied my healing
books. I read about other patients who survived life-threatening
diseases. I listened to healing tapes. I did my meditation and
visualizations. I wrote the pre-transplant half of a book I had
planned to write about my experience, “I call my new lung Tina.”
I kept a “waiting for transplant” journal. I looked out the
window to watch the birds and people and wished U.C.S.D. would call me.
Every time the phone rang, I crossed my fingers. This
was my life for twenty-six months, two weeks and four days.
I finally received “the
call” on June 10, 2001 at 10:50 p.m. I was ready.
The four-hour operation was
routine according to the surgeon, Dr. Jolene Kriett. The following
thirty days in the hospital were not. On the eleventh
post-transplant day, pulmonary edema and acute rejection caused my
respiration to fail. I was medicated, intubated, slept and dreamed
for five days in the ICU. I received “Reiki” and when I awoke,
all was well. I was discharged on July 9, 2001. After
pulmonary rehab, I returned home on September 10, 2001.
The Flolan equipment was
returned shortly after my return home. I wanted to donate the Flolan
and all the paraphernalia to someone, but no one would take it. That
made me cry.
I tell all that will listen that
I am a walking and talking miracle. I can breathe unaided. I
can walk for miles now. I’ve got my own treadmill and I use it
faithfully, it is not gathering dust in my house. I’ve walked
around the San Diego Zoo so many times that the animals know me by sight.
I can walk all the way around my neighborhood in ten minutes.
I can talk until everyone around
me wishes I’d shut up.
I learned Tai Chi, Reiki and
self-awareness. I hand-quilt.
My husband and I resumed
“relations.” He took me to a wonderful lodge in the Sierra
Mountains for Thanksgiving and my birthday. I went fishing for the
first time since 1994. We spent Christmas in Las Vegas; I never
thought I’d see the new casinos. We had a New Year’s Party
where I cooked dinner for twenty friends and had a great time.
Sometimes we go to the movies. I have my life back and it is
wonderful.
I wrote a book about my
experiences, “Seven Simple Steps, How I Lost 70 Pounds Without
Exercising” and I finished the one I had started during my long
wait for my lung, “I Call My New Lung Tina.”
I am adjusting to a new reality.
Since my successful transplant, I continue to work hard to find a balance.
I am not there yet. Physically, I feel very well in spite of
the onset of diabetes, a new problem my doctor had warned me about.
Luckily I have no symptoms. I check my blood glucose and take
a couple of insulin shots per day, exercise, watch my diet. But
these are not “problems” to me. They’re just a part of
the deal.
The losses in my life are
considerable. I grieve for the seven years I gave up to PPH, but I believe
I’ve reached acceptance. I don’t like to waste time now. I
have made new friends. Recently I went back to work.
I’m never frightened, but
sometimes I do get angry. My life is good; the bond with my family
is strong. In spite of all the good things in my life, there
are things that really hurt, like the death of a friend from pulmonary
hypertension on the day after I returned from the hospital. My
friend and I had spent many hours together talking about our lives after
transplant, what we would do, how wonderful it would be. I miss her
terribly.
I believed I would survive and I
did. I am here for a reason. I just don’t know what it is
yet.
It’s a source of great
satisfaction to be able to tell my story.
Be well.
Shirley Jewett
January 30,
2002
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