In 2000, I was diagnosed with sclerodermaand 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 7.
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.
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 Surviveand Live a Happy Life Despite Being Told That You Are Dying.” What I wanted was hope.
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 coordinatedcare helpedto 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.
