Having the Same Goal: I Chose Life – Experts by Experience

January 2014–After three years of being treated for pneumonia, at age 35, with five children and an insignificant medical history, I learned that I had a weird-named disease–scleroderma, which had no cure. I also learned that I would need a double lung transplant. 

Fast-forward to September 2016–I was admitted to a university hospital in Texas where I was monitored and treated for symptoms of interstitial lung disease for several weeks. My situation was getting worse, and I had to face my mortality. I was anxious, scared, sad...I couldn’t breathe. As a nurse, I could read my vital signs on the monitor and I knew that scleroderma might just take me out.

Even so, I had tremendous faith in God, and that somehow, I would live long enough to receive a double lung transplant and live to see my children grow. I remained positive. What I didn’t know was that my physicians had told my husband I needed to be placed on a ventilator and had 14 days to live. If they couldn’t find a donor within those 14 days, they would pull the plug and I would die.

“Dr. Death”–a name I gave my doctor because she always delivered bad news and hardly ever spoke life into the situation–had several heart-to-heart conversations with my husband and me. At a pre-transplant meeting she told us I wouldn’t be able to eat by mouth after my double lung transplant…ever.  Dr. Death went on to explain three options, none of them comforting. The first involved the words “comfort care,” which I knew was code for hospice. Comfort care would also take me off the transplant list.

My second option was to be intubated, but there was a catch: they would keep me on a life-supporting ventilator for up to fourteen days or until transplant, whichever came first. Option three–just ride it out in my current state, which would likely conclude in a code blue situation and the end of my life.

We chose to save my life. I told Dr. Death that I only wanted intubation as a last resort to extend my life. She placed a thin hand on my shoulder, in an almost robotic-like manner, and said, “I know you’re religious, but it’s time to start dealing with reality.” If only I had the breath and energy to gasp and cuss, I would have. But I didn’t, so I just smiled and thought, how dare she!

My condition continued to decline, and I was placed on a ventilator. The doctors approached my husband about pulling the plug, but he would not let me die so easily. He went online, researched “high risk double lung transplants in the US” and found a medical center in Maryland where I might have seen my life extended long enough to receive a transplant.  Two days later, miraculously, I received my double lung transplant. The doctor who placed my right lung told me that the transplant was very intricate–my family and I are forever grateful for their efforts.

When I returned to Texas, six months after my transplant, I walked into the transplant office, wanting to thank those physicians and coordinators who were supportive, and let them know that I had made it. I have not seen Dr. Death since my hospitalization.

I’ve visited there several times for checkups, and have attended their staff meetings, performed interviews, met with current patients, and spoken at Donate Life events to share my experience–and to say thank you.

As a healthcare professional myself, I understand the obligation to inform patients of their prognosis. But I felt disrespected, as if my home team did not have the same goal that I did, which was saving my life. Physicians should respect the wishes of the patient and present the difficult information or prognoses without offending their patient’s spirituality or positivity.

Experts by Experience is a collaboration between Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications, by uncovering opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.

About the Author: Lia Young, a native of Palestine, Texas, is assistant director of nursing at a pediatric hospital in Dallas. She attended Texas Woman’s University and obtained her Bachelor of Science in Nursing. She is the author of the book, No Matter What…I Still Win, (available on Amazon), which chronicles her inspiring scleroderma and lung transplant story. She enjoys being a mentor and resource for individuals undergoing lung transplantation and other medical crises. She encourages those seeking more information on scleroderma to visit www.scleroderma.org.

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Your a wonderful writer – I think there’s may be a book in this! (Consider Harvard Writers Course by JulieSilver.?)

Regarding “Dr Death” which I think you articulate and describe well, there is a broad question – what to do about physicians who are highly technically competent but have very poor interpersonal skills? I don’t really have a good answer- I have met brilliant surgeons who had horrible skills and brilliant surgeons who had wonderful personal skills but generally I would say that most of the time I prefer communication skills to competence, but for some things I could care less about their personality, only outcome.

So, can highly skilled but poor communicators be taught to be better? I don’t know – maybe a little- but I think – like alcohol, these high pressure events bring out ones true personality. I think the key move to improve the system proobably needs to be made in medical school when the student selects a residency program that he or she selects one that is appropriate for his or her temperament and patient base. (For example, if you choose pediatrics, but you don’t like kids, then you are going to have a problem!) I think medical schools can do a much better job in councilling students about residency choices – these are highly competitive, but for the most part, young folks, who may be choosing residency programs for competitive reasons rather than which one will bring them the most joy.

Anyway, After that choice in medical school, the dye has been cast but for a transplant team just about everyone needs to be very high on the communication scale (the only teams I can think of needing a higher level of communication skill would be the organ donor teams and possibly pediatric oncology).

Anyway, great article!

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