In our 2010/2011 Summer Competition PNDU gave away an autographed copy of the book "Lifeliner - The Judy Taylor Story" by Shireen Jeejeebhoy. Shireen's book is a biography of the first Home PN consumer and her experiences under her doctor - Dr Jeejeebhoy, the pioneer of HPN and Shireen's dad. It's a great read for all consumers, their friends and families, health professionals and as well as anyone who loves biographies and/or has even a slight interest in HPN.
Gillian won our 2010/2011 Summer Competition and was awarded the prize. After reading the book, we asked Gillian to write a review and were so impressed with what Gillian wrote. You can read her review below.
We were very fortunate to have the pleasure of talking with the author, Shireen Jeejeebhoy, by video conference at our September 2011 Regional Meeting in Sydney when she shed light on her own background, what it was like writing the book, what she learnt from the experience, etc. We are very grateful to Shireen for sharing with us. See Shireen's website here.
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Lifeliner - the Judy Taylor Story
I was lucky enough to win PNDU's summer competition, commenting about life on PN in 50 words. The prize was a copy of "Lifeliner- the Judy Taylor Story", signed by both the author Shireen, and her father, Dr Jeejeebhoy. I was then asked by PNDU to write a review of the book for the members, so here it is.
"Lifeliner" is our story, the story of why all of us on home PN or EN are able to live without food, or without absorbing nutrition from the food that we eat. It's a story of a remarkable woman determined to live, and her dedicated doctor, equally determined to keep her alive despite not having the means at hand to do so. In 1970, Judy Taylor was the first person to be put on long term TPN (total parenteral nutrition), the name given to this method of feeding by its pioneer, Dr Khursheed Jeejeebhoy. This is the story of how, over the next twenty years of her life, Judy was a willing 'guinea pig', as she, led by 'Jeej', blazed the trail for the rest of us to follow.
In September 1970, after three years of pain with no specific diagnosis, Judy ended up in Toronto General Hospital with all her large and small intestines and gall bladder already excised due to necrosis, caused by a blood clot, possibly caused by the Pill. In 1970, this meant that she would starve to death. Although short term intravenous nutrition was available for patients after operations, long term was only a dream. She was passed on to Dr Jeejeebhoy (Jeej), a newcomer to the hospital, as a hopeless case, yet she was desperate to live for her husband and three young daughters' sakes. Jeej determined to do all that he could to save her and spent much time over the next ten months while she was in hospital, and indeed over the next two decades (and probably the rest of his career) reading all the available research from around the world, including veterinarian animal studies, in order to decide what and how to feed her.
Jeej had to decide what nutrition was needed in order to live: protein, carbohydrates, fat, vitamins, trace elements, electrolytes... but in what amounts? in what medium to deliver them - fat or no fat?; and how to deliver them into her body. At that time the only catheters available were plastic and had to be changed every couple of days, so one had to be developed especially for her circumstances. Also, no pump existed to deliver the TPN at a rate fast enough that she could unhook and have her days free to walk around. It was Jeej who thought being free of the equipment/TPN during the day was a good thing. This was a radical thought at the time in Canada, USA and in other parts of the world, years after Judy first went on TPN. A contraption was developed on an IV pole using blood pressure collars and an oxygen tank to do the job, which was christened 'Lester' by the staff. They had to develop a way of keeping the line open when she was unhooked, and whereas nowadays doctors can obtain much information from blood tests about our organs' functions, Judy had to keep going to hospital for biopsies.
Throughout her remaining life, Judy suffered pain daily from a drain which took bile from her stomach into a leg bag, but luckily she always had a good sense of humour and sense of the ridiculous, and could usually joke even when in pain. Over the years she suffered from infections, skin breakdown and hair loss, sometimes due to a lack of something in her TPN, which Jeej would have to discover. During her worst times she would alternate between anger, fear and acceptance, but always bounced back, determined to continue life at home.
'Lifeliner' has other 'heroes' apart from the two main participants. Judy could not keep going without the love, support and assistance of her husband as carer and the others in her family. Also, she had a large support group of friends, including the new friends that she made as she mentored new TPN patients and joined support groups (Canadian TPN Patient Association and US Oley Foundation), as well as the nurses who understood her case and became close to her. Jeej relied on his family's support, too, but also on the work from many researchers and doctors whose ideas he tried, adapted and sometimes rejected. The work of these doctors supplied Jeej with answers or possible directions to many problems that occurred over the years, and ultimately kept Judy alive. In turn, his work led to papers and talks which other doctors around the world could use in their work and the further development of TPN, ultimately keeping us alive.
Throughout all this, Judy had a strong faith in God, and thanked him for every day she lived. She had a great attitude to life, filling her time with much volunteer work over the years. She once told a friend, "Stop and take time to look around... don't take anything for granted... if a bird is going by, take a look at it... take time to work in your garden and take the beauty out of the flowers... most people are in the fast lane and go, go, go and they miss 90% of their lives."
I loved reading this book, because until then I'd used TPN much as I would antibiotics, as a cure for a medical problem, without any thought to the human side of its development. I enjoyed learning about the difficulties faced and overcome by Dr Jeejeebhoy and his staff in developing TPN and the equipment need to set up at home. But the largest impact was from gaining a bit of insight into the struggles and joys of Judy Taylor as she made the most of the twenty extra years that TPN gave her. Her determination to live meant that many medical break-throughs were possible, as different things were tried and either succeeded or were rejected. She could easily have given up, not able to face more tests, hospital spells, pain, but she kept going, trusting in Jeej and his team. This enabled them to see the long-terms results of TPN on the body and to make adjustments as new information was discovered. Her strength, determination and sheer joy of life was an inspiration to the many people who came to know her, and continues to be an example for us today.
Many thanks should also be given to the author, Shireen Jeejeebhoy, Jeej's daughter. She decided to write this story after Judy's memorial service and began research immediately, but due to problems in her life, including a closed head injury, it took her sixteen years to complete. Thankfully, she didn't give up, giving us a chance to learn of our TPN roots.
To whom would I recommend this book? Anyone on TPN who has returned home from hospital and begun to get on with life could enjoy reading it. It would then be up to the TPNer to decide whether or not giving the book to family or friends might help them to better understand what is happening in their life. It might be too confronting or worrying for someone new to TPN, still in hospital, who doesn't realise that medical knowledge of TPN has come a long way in the last twenty to forty years and that what Judy endured from time to time probably won't happen to them. It's an easy book to read, apart from some medical terms, with short chapters; but have a box of tissues handy for the occasional weep.
New South Wales, Australia