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|Newsletters: My 25-Year History with TPN|
My 25-Year History with TPN
Twenty-five years ago, Davria (Davi) Cohen went on parenteral nutrition (PN) as a consequence of injuries she sustained in an automobile accident. We asked Davi to share her experiences from her early years on PN and more recently, as an Oley Regional Coordinator. It seemed appropriate as Oley, too, celebrates its twenty-fifth anniversary in 2008!
Historical notes: Davi refers to her therapy as total parenteral nutrition (TPN). In the early years, many of us also knew the therapy as hyperalimentation or hyperal. While these terms are probably familiar to most readers, now the preferred term is parenteral nutrition (PN). It is no longer thought that the therapy can always provide all necessary nutrients (“total nutrition”) to the consumer, and the idea of hyperalimentation, or administering more than optimal amounts of nutrients, is no longer seen as beneficial.
Davi also talks about receiving the LifelineLetter in the early 1980s. The newsletter was started by Lee and Marshall Koonin, founders of the Lifeline Foundation. Soon after Oley was founded, the Lifeline Foundation was merged into Oley and Oley took on the responsibility of publishing the newsletter. (See “How It All Began,” LifelineLetter, March/April 2003, or by calling 800-776-OLEY.)
June 18, 1982, was the day my life became divided into before and after: before the accident and after the accident. We had been in Annapolis that evening, and as we headed home from our seven-year-old daughter’s ballet rehearsal, a man ran a red light and plowed his car into ours.
A policeman at the accident scene saw my bleeding forehead, assumed I had sustained a head injury (I had merely bumped it on the dashboard), and sent for a medevac helicopter to take me to what is now the R Adams Cowley Shock Trauma Center in Baltimore—a decision that saved my life. My seatbelt had severed my mesenteric artery and perforated my intestines. Shock Trauma, the model for our modern trauma centers, was pioneered by the late Dr. Cowley. Dr. Cowley revolutionized emergency medicine with his concept of “the Golden Hour”: if you could get severely injured people to treatment by trauma specialists within an hour, their chances of survival vastly improved.
After two operations, I was left with very little small bowel and only two-thirds of my colon. It was a dark time for me and my family, but my husband, Steve, tried to brighten things up. He would, for example, hang signs in my hospital cubicle, such as “Excuse my restin’, I lost my intestine!”
In the months to come, there would be many things to adjust to, including chronic, persistent diarrhea. I received TPN continuously during most of my nearly seven weeks at Shock Trauma. After several weeks I was coaxed to drink two unpleasant-tasting elemental beverages, alternating one with the other every two hours. A discharge planning nurse told me about a congresswoman who infused TPN at home; she said this might eventually be an option for me. However, at discharge my nutrition consisted solely of the elemental drinks.
Home, Sweet Home
Going home was wonderful, but I was so weak that reading a story to my two year old—one of the normal, everyday things of my life that I had so missed while I was hospitalized—exhausted me. And I was tormented by the wonderful smells of food when my mother cooked. I remember once trying to escape the aroma by going outside, but that was worse: my neighbors were barbecuing! Also, it became increasingly difficult to get the elemental drinks down. I found them so unpalatable—no matter what we mixed them with—that merely lifting the glass to my mouth made me gag.
I began nightly feedings through an NG tube. Generally, a nurse came out each evening to insert the tube. On Labor Day, however, when no one was available, I had to insert the tube myself!
Still I was losing weight, and these enteral feedings did not always stay down. I was again hospitalized, and this time, to my surprise, I was allowed to eat real food. I celebrated my thirty-third birthday in the hospital on September 12 with my family and a cake my mother baked according to my special diet. There was much reason to celebrate that day: my two-year-old son, who had been in a body cast for weeks following the accident, had taken his first steps that morning. I went home a few days later.
Time for Change
It was nice to be eating again, but the diarrhea was relentless; no medication worked to slow it down. Further, I just did not have enough remaining bowel to absorb sufficient nutrients and fluids from the food that I ate. By March, my weight had dropped from about 110 pounds to a dangerous 77. Yet the gastroenterologist I saw did nothing. It became clear that a change in doctors was necessary.
With the new doctor came a new plan: TPN. Since I already knew about the congresswoman who infused TPN at home, I readily accepted it as being a good therapy for me.
In 1983, there was no local home care company. A nurse based in Philadelphia delivered TPN and supplies to my Maryland home weekly. My pump, heavy and pole-mounted, was rudimentary; it could not be programmed to ramp up or down. Each night at 5 a.m., after most of my TPN had run in, I had to reset the pump to infuse at a slower rate for two more hours. I was rarely very alert at that time of day, so I am amazed that I never did any serious harm to myself!
Another down side was that, once hooked up, I felt trapped. There was no way I could go downstairs, and it was difficult to get to my son when he awoke crying in the night. I had to unplug the pump and push the pole down the hall over thick shag carpeting. Usually, by the time I got there he had fallen back asleep.
After I was on TPN for several years, we moved into a one-story house, and shortly after the move, I got my first portable, fully programmable pump.
An Intro to Oley
On her second visit, the nurse from Philadelphia brought an issue of the LifelineLetter, then published by the Lifeline Foundation. This LifelineLetter was a far cry from the one of today, but it served the same purpose: support and education. I learned that there were others on TPN and that they were thriving, not just coping! When the Oley Foundation began, it took over the newsletter and developed other resources for the HPN and HEN community.
Since then I have called upon Oley for help with several TPN issues. For example, when my doctor recommended a Port-a-Cath as a replacement for my Hickman catheter, I had many questions and fears; most importantly, I wondered how could I possibly learn to stick myself?! Through Oley I learned of three consumers with ports who were willing to talk to me about their experiences. I called them, and learned that sticking yourself is no big deal; furthermore, they were able to swim and bathe without worrying about infection. Being able to talk to others with ports helped me make a decision that I have been very happy with.
About six years ago, Joan Bishop, Oley’s executive director, asked me if I would be willing to serve as a panelist at the National Association of Vascular Access Networks (NAVAN, now the Association for Vascular Access, or AVA) meeting the following month in Alexandria, Virginia. She wanted me to speak about the patient’s perspective on using venous-access devices, concentrating on the psychological issues. When we arrived, Joan asked Steve if he would fill in for an absent speaker and address the spouse’s perspective. We thoroughly enjoyed talking to the IV nurses and others about coping with a central catheter. We hoped that our comments might ultimately help fellow consumers as well as our immediate audience.
After that meeting, Joan encouraged us to become Oley Regional Coordinators (RCs). Since we felt that the time had come to give back to the Oley community, becoming RCs made sense. We enjoy making a difference in peoples’ lives by exchanging e-mail messages or having phone conversations with fellow consumers or caregivers. Even if we cannot help in a concrete way, people seem to feel better knowing they are not alone.
Several months ago my dietitian asked if I would contact one of her patients, a woman newly on PN. She sounded so sad and weak when we first spoke. We talked for long time, and as we were about to end the call she said, “My friends stop by and say they’ll pray for me, but you really know what it’s like!”
The next day, I mailed her a thick packet of past LifelineLetters and other Oley material. When I called the following month, she sounded stronger and she had even ventured out with friends. She loved the LifelineLetters; reading the articles gave her the sense that, although she could not eat and had to be hooked up to this strange, scary equipment, she could still enjoy life.
Recently, we received an e-mail from a woman whose father had lost most of his small bowel and was scheduled for further surgery. She and her family were concerned about his quality of life on PN. She had seen our profiles on the Oley Web site and was encouraged to learn that people on PN can lead active lives.
At her request, we phoned her. The three of us talked for nearly an hour, and when we hung up, I was worried that we had overwhelmed her. I sent her an e-mail several days later asking how her father’s surgery had gone. She wrote back saying: “Thank you for the generosity of time and knowledge Steve and you shared with me. You helped my family feel more confident in my dad’s ability to fight back and thrive. I’m not overwhelmed; I am relieved.”
As RCs, most of the contact we have with consumers or their families is of short duration, but there are a few people with whom we have developed long-term relationships. Lillian Horn and I have been e-mailing each other for several years. She lives in South Dakota and, although we are separated by many miles and have never met, we regard each other as friends. We share health concerns, but also news of other things, such as the arrival of her latest great grandchild. I admire her perseverance in working out regularly and am impressed that she enjoys baking for her family, even though she is unable to eat.
At Oley meetings we’ve met in person friends we had made over the phone and through e-mail. At the 2005 conference in Saratoga Springs, New York, we met Jeff and Tammy Hodder. Since we had exchanged photos beforehand, we recognized one another immediately and hugged and laughed like old friends, which indeed we were.
In March 2006 we manned an Oley toll-free line. One of our callers was Beverly Mello. We were on different therapies and had different underlying diagnoses, but we bonded with one another. We continued our friendship, calling one another every so often. When she learned that the 2007 Oley conference would be in Cape Cod, and within driving distance from her home, she immediately registered; she said she hoped I would go, too, because she wanted to meet me. At the conference, someone pointed me out to her, and I heard a familiar voice say, “I’m Beverly!”
Being an RC is not a one-way street. Besides the enormous gratification of helping others, I have learned interesting and useful information. Lillian told me about a Web site where I could learn to understand my lab test results (try www.amarillomed.com/howto.htm, or do an Internet search for “understanding lab results”). I have also been told about intraluminal brushes and the prophylactic instillation of ethanol alcohol to prevent line infections (the latter therapy is still being investigated).
But the real essence of the RC experience is sharing personal experiences with others who are traveling down the same, occasionally bumpy, highway.