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The Nurse as a HomePEN Consumer: The Dual Perspective
Sheila Messina, RN, MA
The author has written about her personal and professional experiences with homeTPN therapy, but much of what she discusses is similarly experienced by consumers of home enteral therapy as well.
I am a nurse who has been a consumer on homeTPN for the past 15 years. As such, I have been able to help both consumers and clinicians understand the many therapy-related issues that are encountered in such a position. Also, I am able to give hope to others that require this type of specialized nutrition that they too can lead a full productive life. In this article I will share experiences that I have had and techniques I use which allow me to be independent and very active.
How It All Began
I require TPN and hydration on a daily basis due to a short bowel. I have Familial Polyposis, which always has the potential for malignancy in the GI tract, and since I was first diagnosed over thirty years ago, I have had multiple bowel surgeries due to the disease. I do not have a duodenum, terminal ileum or colon.
I started receiving regular hydration through a peripheral line in August 1981 in a local hospital ER. I had noticed that I was fatigued all the time during the previous several years, and after being hospitalized for another episode of dehydration, I asked my physician if regular hydration might not be appropriate. After eighteen months of receiving hydration in this manner, my peripheral veins were no longer accessible and I had my first Hickman catheter placed. In 1983 the Hickman was the main choice for an external catheter and the port was just being introduced. For the first few years my solutions came in bottles rather than plastic bags. Pumps were large and non-portable. Imagine trying to ambulate at home using an IV pole with a pump and bottle attached! Rolling a pole over a carpeted area to a bare floor surface created a hazardous situation. Also, going up and down stairs while administering became nearly impossible.
Things have changed dramatically since then. There are now small, portable pumps, 3-in-1 solutions, backpacks for carrying the solutions, and numerous other devices designed to make TPN administration easier for the consumer. It is interesting to note, however, that most of the catheter care and administration techniques I use today are the same as those I used initially. They continue to be effective so I continue to use them.
Initially, I used only hydration on a daily basis. Now, however, as a result of the many bowel surgeries, TPN has been added to the regimen. I administer one liter of TPN three nights a week and one to two liters of hydration on the other four nights. In addition to the usual TPN additives, I administer Calcium Gluconate, Infed, Vitamin B12 and Vitamin D on a regular basis for anemia, osteomalacia and Vitamin D deficiency. I cycle my administration over the evening and night hours. If necessary, I can administer during the day and still perform my normal activities, however, I prefer not to. I view my therapy as part of my routine that allows me to do the usual activities of daily living and to travel extensively in my professional life. I do eat a modified regular diet. I am totally independent in my care and participate actively in all decisions regarding my therapy. I believe that all consumers should function at their maximum and that clinicians should assist them in any way possible to achieve this goal.
Careful Catheter Care
There are several technical and psychosocial issues that relate to my therapy which are important to me and to anyone who is trying to understand this therapy. Many of my experiences are common to consumers dealing with homeTPN.
As I said previously, I have a Hickman catheter. At present I have my fourth Hickman. The first one lasted one year and was removed when I developed a Serratia abscess at both the entrance and exit site. The second one lasted almost seven years and was removed due to an internal fracture. I had the third catheter for three years and it was removed due to a progressive occulsion. The one I use currently has been in for over three years. The last time I had any type of catheter-related infection was over one year ago. I have not experienced a significant number of infections considering the length of time I have been on the therapy. Only once have I been hospitalized for sepsis. I have learned how to identify any potential problems early, and then take the necessary actions to minimize them.
I attribute my success with catheter care to certain techniques that I insist on using. First, I always use a mirror when changing the catheter dressing. The exit site has always been in my chest and in order to assess and cleanse it appropriately, I must be able to view it directly. Your view is severely compromised if you are trying to do it just by looking down at your chest. Your head and neck do not allow that much flexibility. Consumers can use the bathroom mirror, or if they need or wish to sit while doing their care, a cosmetic mirror on a table is very effective.
I use a dry dressing technique. I cleanse the area with alcohol, place a small amount of a generic antibiotic ointment around the site, and then apply two 2”x2” gauze pads held in place with transpore tape. I use a skin prep under the tape to protect the skin from breakdown. For the first several years I used Betadine after the alcohol, but discovered that I was getting tunnel compromise, so I changed to the antibiotic ointment. I change the dressing every five days unless more frequent changing is indicated. I am aware of the use of an occlusive dressing for the site, however, when I have tried this type of dressing I develop skin and site compromise.
I do not use a clamp on my Hickman, except when I change the cap. The surgeon who placed my first catheter had experienced catheter fractures on several patients from nurses using clamps with sharp edges and therefore, did not wish his patients to use a clamp. While there are now clamps with smooth edges, I find wearing a clamp continuously very uncomfortable and not necessary for my safety.
Another technique that is a “must” for me, is to attach the IV tubing to my clothing when I am administering the solutions. I do this to avoid “pulling” at the exit site should the tubing become caught when I am ambulating or turning in bed while sleeping. I place a piece of tape about four inches from the catheter-tubing connection. I then place a safety pin through the tape and pin it near the shoulder of my clothing. A “pulling” at my shoulder alerts me to a “catch” somewhere on my tubing and the need to check and free it. While it is true that central lines used for extended therapy do have a cuff which seals the catheter in the tunnel, any pulling on this cuff, while not necessarily dislodging the catheter, can cause an irritation in the tunnel which can lead to compromise and possible infection.
The above techniques for catheter care and solution administration are ones that I have found to be extremely useful for me and that I believe have contributed to my success with this therapy.
The psychosocial issues associated with homeTPN play a major role in consumer compliance and positive therapy outcomes. Like other homeTPN consumers, you may be receiving only technical or medical information from your physician, but there are many issues beyond formula specifics and catheter care that affect therapy outcomes that can and should be discussed with the physician managing your therapy. For example have you discussed how it feels to have a catheter in your chest? How it feels to be dependent on high-tech nutrition? What it’s like to go through the hassle of “hooking-up” each night and to sleep with a bag, tubing and pump in your bed? Whether the therapy is affecting your sleep; and if it is, how that is affecting your health, mental well-being and productivity? How the therapy has affected your relationship with your spouse? How the need to infuse has affected your social life?
The list of issues goes on and on, and yet many times they are not discussed during clinic appointments because the physician does not consider them important enough to address or the consumer is too shy to ask. It is my experience that if the consumer does not have access to answers for these questions, home therapy is not likely to be successful. The consumer is apt to become angry and depressed, and will end up not following through on administering regularly or will report to their physician that “this just is not working.”
Also, in many situations consumers are not encouraged to participate in their care. However, this doesn’t have to be the case. In fact, you will often find the most successful homeTPN consumers have an open rapport with the physician managing their therapy, and play an important role in their care. Developing a good relationship with your physician hopefully starts early in therapy, with positive, mutual exchanges about issues important to the consumer and the physician. However, it is never too late to start working on improving the relationship with your physician. The benefits for both of you are tremendous.
HomeTPN is a dynamic therapy. Just as there is not a “one formula fits all” standard; how consumers care for themselves and deal with their therapy is individual. Just as I have found certain care techniques that work for me to achieve an effective outcome, you may find other techniques that work for you. What matters is that the outcomes are positive and allow you a better quality of life.
Adapted with permision from an article originally published in the Journal of Metabolism and Nutrition.
Copyright © 1995 The Oley Foundation