In 2000, I was diagnosed with scleroderma
and severe pulmonary hypertension (PH). I had known about the scleroderma for a few
years, but the PH was an unfortunate surprise that came on
like a freight train. I was hospitalized more than a dozen times the first year
of my illness, and put on Flolan within three months of my diagnosis, the highest
level of treatment available at the time. I was told I had two to five years
to live. I was just 33 years old, working as a social worker, and my children were 4 and
After receiving this diagnosis my natural response was not to walk, but
to run to the self-help section of the bookstore where I searched desperately
for information on this latest, and very unwelcome, stage of my life. I found books that talked about death and dying, other books on how to
care for the dying, and stories of grief and loss from the perspective of the
ones left behind. At that time, there was not a whole lot on how to live despite
being told you were dying, or anything about the grief and loss the dying person experiences.
|Liz DeVivo and her daughters in 2001.|
I wanted a book that would help me not only with all the concrete
end-of-life choices that I needed to make,
but also with additional emotional information - something that might help me
peacefully come to terms with the end of my life. Better yet, what I really
wanted was a book that would help me survive regardless of what the medical
personnel and literature said.
In essence, I was looking for a book entitled “How to Live a Happy Life
Despite Being Told You Are Dying," or even better yet, “How to Survive
and Live a Happy Life Despite Being Told That You Are Dying." What I wanted was
My health continued to deteriorate, and I started to take an experimental drug which helped only slightly. I live
in upstate New York and all of my care up until that point was in New York City. I asked
to be evaluated for a transplant and was set up with an appointment where I was
told on the spot that I was not an adequate candidate. The surgeon thought it would be a "waste of resource" because of the
scleroderma and because I was too ill. I left heartbroken. All I wanted was a chance to be a mother. I needed to be there for my
children. I was determined to find another center.
UPMC turned out to be that place. When I came to Pittsburgh in
2001 for a transplant evaluation, I was told not only did a need a double lung transplant but I also needed a new heart. So I began my wait, and my terrifically coordinated care helped
to stabilize me enough to get to my transplant. It was a VERY scary
time, not knowing whether or not I would make it to the "call." I was the only
patient waiting with type “b” blood for heart and lungs and I was next on the waiting list. It would take 23 months for that call to come. My transplant took place on July 29, 2003, and after many complications, I finally returned home on the day before Thanksgiving.
|Liz DeVivo (center) and |
her daughters in 2013.
Now ten years have passed since I was given a new life by an
angel who still to this day remains anonymous to me. I have written “The
Book” that I was looking for during that dark and scary time in my life. My book is part
journal, part practical and offers concrete advice on negotiating “the system" as well as emotional advice for the soul. I have also included thoughts for healthcare professionals when dealing with patients in general, and chronically ill
patients in particular.
I thought that by sharing some of my experience I could provide a sense
of validation for people going through similar difficulties, in the hope
that it provides others with what I was so desperately searching for at
the time of my initial diagnosis: hope.
This year, I get to see my youngest graduate from high
school, something I never thought possible. Thank you UPMC.
Labels: pulmonary hypertension, scleroderma, transplant