- Meet Consumers/Patients
|Newsletters: Specialized Nutrition: The Patient’s Perspective (Part II)|
Specialized Nutrition: The Patient’s Perspective (Part II)
Elizabeth V. Tucker and Darlene G. Kelly
Part I of this article addressed issues of transitioning from patient to consumer and adapting to using nutrition support therapy at home. Part II will focus on complications, the role of the Oley Foundation and psychosocial issues. Part III will appear in the next issue of the LifelineLetter and will discuss travel, children on HPEN, the long-term outlook and other issues such as ostomies, depression and the impact on families.
EVT: I was very fortunate to have only one complication in the first three and 1/2 years. Because of my Crohn’s, I had become anemic. The doctor decided I should have an iron dextran infusion. The home care company sent out a bag and I was to infuse it using gravity. While it was running in I inadvertently fell asleep. When the telephone rang, I jumped out of bed to get it, forgetting that I was hooked up, and pulled the catheter out four or five inches. I called a friend who is a nurse, and she told me to get to an emergency room immediately. Once there I had a chest x-ray and lay in a room waiting to see a doctor. Both he and the nurse touched the catheter and the skin around it without putting on sterile gloves or scrubbing their hands thoroughly. I hadn’t learned yet that I had to speak up and not let them do it. The catheter hadn’t pulled out of the major vein so they sent me home. Over several hours it actually contracted back into my chest. The miracle was that I didn’t get an infection. The lesson I learned was that all medical personnel were not familiar with catheters and I needed to take charge in situation like that one.
My first catheter infection evolved very slowly. I felt a little out of sorts,0 had a cough, and was running a fever. I actually didn’t think much about it until my fever was 102 (my normal is 95). I was having chills and sweats consistently, and I could hardly move out of bed.
I have had sepsis several times, tract infections, and even a mechanical malfunction that Dr. Kelly wrote up for JPEN. 4 While reading about complications is helpful, experience seems to be my best teacher. I become dehydrated very easily and have had to add extra hydration as part of my daily routine on numerous occasions.
DGK: It is essential that time be spent teaching the new HPN consumer about complications at the beginning. Not only does the individual need to know what they are and the possible consequences, but also the steps to be taken to intervene are a critical part of the initial education.
We also find that trying to readmit patients on TPN to a specific area of the hospital allows us to train the nursing staff in the exact techniques that our consumers have been taught. This avoids inevitable conflicts between patients and their caregivers. I certainly agree with Liz’s comments about learning to advocate for herself. Frequently an impressed nurse tells me that a consumer has been very vocal about his or her catheter care. Often the nurse is made aware that this catheter is not just another IV line, but the consumer’s lifeline.
What the Oley Foundation can do for the consumer
EVT: I was introduced to the Oley Foundation in 1989 by several corporate members of the home care company that took care of me. I had started a business helping people cope with chronic illness and providing stress management in the workplace. They felt I would learn a great deal from Oley and that I had talents Oley could benefit from as well. I flew to Albany, NY and then drove to Saratoga Springs for the meeting. I was so impressed with the information I got from the speakers and the connections I made with other HPN and enteral consumers. I met another HPN consumer from my area, which meant we could support each other. I was hooked!
The executive director and other members of the office maintain a web site, listen and try to direct callers with problems to a solution, work with medical professionals to provide information, and in their extra time, try to solicit funds to keep this unique organization going. With this very small but dedicated staff, Oley provides a yearly conference for consumers, their families, and medical professionals. It is held in a different part of the country every year so more people have access to it without having to travel far. There is a bi-monthly newsletter, the LifelineLetter, which has wonderful articles and provides a list of three consumers with explanations of their expertise (parent of a child on HPN, consumer on enteral, HPNer with experience in insurance, etc.) These people can be reached using a toll-free number (800) 776-OLEY (6539) so there is no expense to the caller. The Oley Foundation has a web site (www.oley.org) with extensive information, including past LifelineLetters.
Every region of the country has a group of regional coordinators – consumers or parents of consumers – to set up small area meetings, to help those with questions, or to just be a sympathetic listener.
DGK: The Oley Foundation is an organization started in 1985 to support consumers and their families, to provide information on home parenteral and enteral nutition, to analyze data regarding outcomes of these therapies, and to encourage networking among consumers and clinicians. In my opinion, every consumer of either home TPN or tube feeds is expected to require these therapies for more than a few months should be made aware of the Oley Foundation. Those who are able to attend the annual consumers’ and clinicians’ conference almost universally come away with new friendships (someone who understands their therapy and its challenges and is a willing listener), new information based on current scientific data that apply to their situation, and often reassurance that they are not alone. For those who cannot attend the Oley conference, the organization maintains a video library of many of the presentations from the meeting.
A recent publication (5) studied outcomes of HPNers who were members of the Oley Foundation compared to others who were not. This actually identified a lower incidence of infections and of depression among those who were active in the Oley Foundation.
EVT: From my perspective, while the physical aspects of taking care of a catheter or J-tube, etc. and being on HPEN are obviously very important, the psychosocial issues and how they are handled are equally important.
Grief and grieving, while a normal part of life, can be a challenge for a person on HPEN. Why? Because while everyone experiences losses in their life and deals with grief, those of us dealing with a chronic illness and complicated medical therapy can experience many more losses which still must be dealt with. Failure to get my Crohn’s under control can mean pain, physical challenges, and the side effects of medications. Surgery can mean the additional loss of physical parts of me. Being on HPN means adjustments to my lifestyle. All of these things can have an impact on my ability to work.
Dealing effectively with the grieving process that occurs with these ongoing losses can have a tremendous impact on my quality of life. While we tend to think of grieving as a linier process – denial, anger, sadness, then acceptance – my own experience has shown me that it is really a spiral. In that spiral you can go through any of the emotions once, twice or even more times. Hopefully, they become less intense as I deal with them. What I don’t want to do is get stuck in the denial, anger, or sadness and not move on. I have met and known any number of parents who seem to be stuck in the anger stage because this very unfair thing has happened to their child and changed their life as well. For several HPENers I know it is either the anger or sadness stages that they can’t seem to get through – why me, my life will never be “normal,” resentment of those not on the therapy. Not dealing effectively can lead to my next point, isolation versus interaction.
I am, fortunately, a very social person but there have still been any number of opportunities for me to pull into myself and lessen or stop my interactions with others. Keeping myself engaged in the world, particularly by doing volunteer work and helping others, is very important to me. Because I have a chronic illness and am on HPN, the opportunity to focus too much on me is always an option. Interaction with others by doing volunteer work allows me to see that there are many people in the world with problems and to feel good about helping someone else. I highly recommend it.
My last thought in this area has to do with the positives and negatives of having a pet. Actually, I have three – a cocker spaniel and two rescued cats. The positives are many. They give me tons of unconditional love. They are totally accepting of me just as I am – HPN and all. They give me a reason to get up in the morning and to interact with the world – I have to feed them and take the dog for walks, which also gets me moving. Those are just a few of the reasons I feel my pets are so beneficial for me. The only negative I can think of is that I must be that much more careful about sterility when I am changing my dressing, getting my PN ready, or storing my supplies. This is a small price to pay for the positives.
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