Q: First, could you explain the title of your book. Just what is a “lifeliner?”
A: A “lifeliner” is someone who has a lifeline — a permanent indwelling catheter through which they receive total parenteral nutrition — and is reliant on the parenteral solution for their calories and nutrients. Judy was the first lifeliner.
Q: In your book, you talk about Judy’s danger in going to a local hospital that does not understand how to handle her illness. It seems that total parenteral nutrition (TPN) is uncommon. Would you have any idea how many patients are surviving thanks to TPN worldwide?
A: At the time that Judy needed urgent care, TPN was still not well known outside of research hospitals. As far as I know, it was slow to spread, taking years, beyond Toronto General Hospital (TGH). TPN is much more common now, especially once physicians discovered its usefulness for helping manage non-gastroenterological diseases that impair a person’s ability to eat or digest food, diseases like cancer or AIDS or Cystic Fibrosis.
According to the Oley Foundation in the US, cited by the International Foundation for Functional Gastrointestinal Disorders, extrapolating from 1985-1992 statistics, the number of people on tube feedings/enteral nutrition today are currently estimated to be 176,000 and the number on TPN or parenteral nutrition to be 46,000 (long-term users are estimated to be 6,000 to 8,000) in the US. I’m not sure if these numbers include people with CF, cancer, AIDS, and other diseases that lead to wasting and who have to go on TPN in order to stay well nourished while undergoing treatment or in the end stages of their disease. Thus the number of people on TPN or who know someone on TPN in the US is in the tens of thousands. Canadian numbers are usually 10 percent of American. I don’t know the numbers in other countries, but do know it’s used worldwide.
Q: Your book does a great job explaining the medical ramifications of those on TPN while being more than accessible for the lay audience. What motivated you to write Lifeliner?
A: My former boss, Patti Bregman, who also knew Judy, was at Judy’s memorial in Toronto. After the service was over, she suggested to me that someone should write a book on Judy’s story, that it should have been done a long time ago, and perhaps we should do it. She felt that I’d be good at it. A light bulb went off, and I immediately said, “Yes!” We started working on it together but I quickly took on the bulk of the work and after a few months she bowed out of the project.
Q: If there were one message or lesson you would want readers to take from Lifeliner, what would it be?
A: Life is worth living. Suffering doesn’t mean the end of life nor does it mean the diminishment of the enjoyment of life. A thriving life with suffering is not possible without four things: faith, a medical team that you know and that is willing to be available when needed and to work with you to meet your goals, family support, and one’s own will power.
Q: Your father’s perseverance and commitment to Judy and those like her is commendable. Is he still practicing medicine?
A: Dad has sort of retired. Retirement for Dad means that he closed his lab at the University of Toronto and his office at St. Michael’s Hospital. He continues to see patients three days a week and to do scopes (looking inside the intestines or stomach) on one or more of those days at a private clinic. One-half day a week, he does rounds, and another half-day he teaches residents and TPN Fellows about nutrition and Home TPN at a clinic in St. Michael’s Hospital. The clinic will ensure his knowledge and experience will not be prematurely lost to future generations.
Q: You started writing this book years ago, but had to stop for awhile. Would you mind telling our readers what transpired?
A: In January 2000, when I was one-quarter through writing Lifeliner, I was injured in a multi-vehicle crash. I suffered neck and shoulder injuries, but even worse, I sustained a closed head injury. It took me many years of rehab, brain biofeedback treatment, and hard work to recover and compensate enough from the head injury to be able to finish writing the book, with help and within the limitations my cognitive difficulties imposed on me.
Q: Your biography was published by iUniverse. Why did you decide to forfeit traditional publishing for a print-on-demand publisher?
A: In a nutshell, the stress of going through the agent rejection process, on top of everything else I was dealing with, plus more wasting of time waiting for agent replies, when I was already seven years behind schedule, drove me to seek a better solution. I had heard of iUniverse in the fall of 2006, and in 2007 I looked into it again, called them, and the person was so friendly and helpful, I signed up.
I liked the fact that I had more control over the final look of the book, things like what spelling to use, the cover (I’d heard horror stories of authors not liking their covers and being unable to do anything about it), and final say on every aspect of the publishing process. I also liked the fact that iUniverse would provide more marketing help than traditional publishers do for many authors.
Q: Since your father, Khursheed N. Jeejeebhoy, MB, BS, FRCP (C), was Judy’s doctor for over twenty years, how did he feel about your writing her story?
A: He’s pleased and delighted that I took the trouble to tell Judy’s story.
Q: How does Judy’s family feel about this book being published?
A: Her family is thrilled. Cliff was candid right from my first interview with him. He wanted Judy’s story told. Her daughters spoke to me at length too, particularly Cyndy and Miriam; they were eager to tell their mother’s story and to learn more about the details of what happened to her. Miriam also was instrumental in ensuring the manuscript was finally written in 2006 by introducing me to a man who was able to help me organize the writing so that I could get it done. Cyndy went with me to the TGH medical records department, while Cliff provided me with the permission documents I needed. She helped me transcribe the stacks and stacks of medical records. I could not have learnt of all the details of Judy’s life, the details that made her come alive in the pages of Lifeliner, without their support and generosity in giving me so much of their time.
For a more extensive interview, please check out this ezine article.