- Meet Consumers/Patients
|Newsletters: Collective Wisdom|
Compiled by Lisa Metzger
This autumn I had the good fortune to participate in a teleconference between three Oley members — Ann DeBarbieri, Don Young, and Liz Tucker — who have each been on nutrition therapy (HPEN) for many years. We were initially discussing the value of support groups for another Oley project, but when I finished the transcript of this conversation, several readers were impressed by the dialogue and felt it could be of value to the entire Oley membership. These members talked about coping, work, family, surviving — key topics to most of us. We welcome your feedback.
Coming Home on HPN
Lisa Metzger: Can you tell us how your needs now are different from the needs you had at the start, and where you’ve found support when you’ve felt you needed it?
Don Young: Both professional people and friends and neighbors were very supportive when I first came home on PN. The difference though, was that friends and neighbors didn’t know what to do. If I had broken my leg, they would have known how to help. But nobody knew what to do with a person who was in my situation. It was all so mysterious and frightening to them. I barely understood it myself; how could I expect them to understand it?
People seem to expect tubes and lines when they come to the hospital, but they don’t expect it in the living room. Several times I was visited when I was hooked up and it really upset people. That was a surprise to me. My friends are not shrinking violets; they are pretty tough. To this day I find it strange. I mean, you visit someone who’s been in a terrible auto accident, and they’re bloody and scarred. I was just sitting there with this pump running, and they found it intimidating. It was the fear of the unknown.
Also, at that point I couldn’t eat, so people were reluctant to eat around me. That really stifled social situations. People were just being polite, and that’s completely understandable.
Ann DeBarbieri: You were on a full-size pump at the time, weren’t you?
Don: A full-size pump, on an IV pole. You take that out of the hospital and put it in the house, and it’s unexpected. I went from twelve to eighteen hours a day on HPN in the 1980s, and by that time we had portable pumps. I don’t see people concerned a bit about a backpack. But despite the nice things we’ve got now — portable pumps, backpacks, and all that — I think people going home on PN today experience the same things we did when we went home.
Liz Tucker: I have been on HPN since 1986. I came home with a large pump and pole also. About a month after I came home I called the home care company that took care of me. They had an office about five miles away, so I went down and they gave me a tour. I got to talk to the nurse who called me and to the general manager. For me, that was a huge thing. They got to know me, I got to know them, and I had a better understanding of what was going on. So even though no one else around me necessarily knew very much about what I was doing, I had a really good connection with the home care company people, and that helped me a lot.
Don also spoke about eating. I’m on HPN twenty-four hours a day because of Crohn’s, and I’ve had periods of time when I don’t eat because of obstructions. My friends have known me many years, and yet it is still uncomfortable if we go out and I don’t eat and they do. It’s not uncomfortable for me. I’m fine, because who wants the pain and the rest of the stuff that comes with the obstruction? But the people around me are uncomfortable that I can’t eat, even after all this time.
Ann: I started HPN in 1987. My doctor was still having her patients mix their own solutions. To me that was initially the most intimidating thing: putting all these things together in a bag, having to maintain sterile technique, and being terrified I was going to make a mistake. But I also had a good connection with my home care company. The company was so used to dealing with my doctor’s patients, and so well versed in how to get them comfortable at home, that once I got past the fear of making a mistake, I didn’t feel terribly isolated.
But although I felt fairly comfortable with the regime and fairly comfortable with the therapy, I felt like I was the only one doing this. I knew that wasn’t true in my head, but not in my heart. And I wondered, am I going to be able to cope with this?
Liz: Of course, the huge difference in how I felt made doing all of this just fine. I will, however, admit that for a while I didn’t infuse about one night a week, even though I was supposed to infuse every night.
Don: It’s a mental health day.
Liz: That’s exactly right. I did it because I wanted to be sure I was the one who was still in control. I waited two years to go on HPN from the time they first brought it up to me, because in my mind it seemed if I ended up having to be on HPN, the Crohn’s had finally won. So for a little while I did not hook up one night a week just because this way, I thought, I’m still the boss; I’m still maintaining control. But then I got smart enough to realize this wasn’t exactly what I wanted to do anymore, that when that night came and I didn’t feel well, I should hook up.
Ann: I had been sick with infections and a variety of other things for so long that I was forty pounds under the weight I should have been when I started HPN. With the immediate relief of feeling so much better and gaining weight and starting to look like a human being, I didn’t have the temptation of skipping a night for probably the first year. But as I started to get back to normal, there were nights when I’d be hooking up later than I normally would. I’d be tired, and think, I just don’t want to do this tonight. But I don’t think I ever actually skipped just because by the end of the day my body would want it so badly that I knew I would feel really awful if I tried to skip.
Working and Traveling
Lisa: What did you do about work after you went on HPN?
Liz: Originally when I went on HPN I had my own business. For about eleven years I did motivational speaking and stress management seminars. I traveled all over the United States, and to Europe five times. On the first trip to Europe I assumed they would strip open the boxes that had all my HPN and stuff in them and that the customs people would be all over me, but I wasn’t ever stopped by customs. I was in Germany when 9/11 happened.
My home care company shipped the pump, the pole, the whole shebang for me, everywhere I went. It was wonderful. Out of all the times I traveled, I had one time when my pump and pole didn’t get there, and as it happened I was doing a stress management seminar for a home care company. So they had a pump and pole.
Then I worked for five years for an insurance company. Toward the end of that job I started having to do hydration all day, then my doctors switched me to HPN twenty-four hours a day. During that time I had a bunch of surgeries and it ended up they didn’t think it was in my best interest to work.
Ann: When I started HPN I was just starting a new job, which as it turns out was wonderful, because it gave me more flexibility than private practice did. During the time I was working I was never on HPN during the day. I did travel occasionally, but it was usually for no more than one or two nights. By the time I was in a job where I was doing more traveling, I was only on hydration at night; the solution didn’t have to be refrigerated, so I could just bring it with me. At that point I had a portable pump. (As a little aside, I found out about portable pumps at my first Oley conference. That was my big awakening, and one of the best things Oley has done for me.)
In 2001, when I had my last major gut surgery, I wound up having to be on HPN nineteen to twenty hours a day. I was home recovering for quite a long time and I struggled with the issue of whether I was going to go back to work. I was trying to arrange to work at home a couple of days and work in the office a couple of days each week. Finally my husband sat me down and said, “Do you really think this is realistic? Think about how you feel during the day.” I finally did come to the conclusion that it wasn’t realistic for me to go back to work. But it was a huge adjustment initially.
I actually wound up going to see a psychologist to talk about it. The thing was, it wasn’t on my terms. I had always looked forward to retirement as a time when I would do certain things. I expected to work part-time during retirement. But here I was, not only unable to do any kind of work, but also unable to do all the things I had envisioned doing. I have limitations on what I can do physically, in terms of my stamina and how I feel in the morning and things of that nature.
So it’s a lot of things in terms of the adjustment, but I think the biggest thing was that it was forced on me. It wasn’t my decision. I mean, it was my decision ultimately, but it wasn’t a decision I had much of a choice about.
Liz: Some of my friends got together and had an “intervention.” They said, “You understand, you just can’t do this anymore. Maybe some day things will be better and you’ll be able to work, but not now.” At that time I was having surgery about once every year and a half. By the time my friends got done I realized they were right, but it was a huge assault. I still volunteer when I can. I have to do something where I feel I have some worth. I know I have worth even if I don’t do something, but as long as I feel well enough to be able to do something, I want to be able to do that.
Lisa: How can HPEN consumers learn from one another?
Don: At the last Oley conference, I went to the round table discussion some young people led on dating and stuff because I wanted to hear their back and forth. Mostly the participants were teens and twenties, and they were really sharp. To them, the Internet is the same as a textbook was to me. It is the place you go to find something.
Liz: My sense is that people get more information face to face. I used to do a lot of visiting for people who had ostomy surgery. I could talk to them on the phone until I was blue in the face, but it wasn’t until I walked in the room and they saw that I didn’t have an extra head that they really understood they could live a normal life with something that was such a change for them. I believe there’s a need and a place for face-to-face contact with people.
Ann: I corresponded back and forth by e-mail for quite a while with a woman who has my disease, but she wanted to meet me. It wasn’t as important for me because I had met someone through Oley who has my disease. And I had the Oley family as my support structure. But I did go meet her. For her, it was a huge thing to have a face-to-face sit down with somebody who was going through something similar to what she was going through.
Lisa: Can you comment on how HPEN has affected your relationship with family members?
Liz: My son was an adult when I went on HPN, but it’s been interesting watching my grandkids. When they were little, I was on hydration. I told them Grandma needed more water. Now they continue to ask when they have questions. It’s made no difference to them whatsoever, but they have felt comfortable about it. So aside from meaning I have more energy and can do more things with my son, his wife, and my grandkids, I don’t think it’s had any impact for me with my family.
Don: Parents of kids who I coached said to me, many times, “I don’t envy you your disease, I don’t envy you being on HPN, but I do envy that you have all this time to spend out on the ball field — not just with your kids, but with my kids. You have more time to spend with the kids doing fun things than I do because I have to work so much.” The first time I was told that, I thought, Wow. That’s absolutely true. I spent more time with the kids in this community than anybody else because I had the time to do it. Looking back, I would have hated to miss all that.
Ann: I don’t think I can separate my HPN dependency from the rest of my disease; it’s too integrated. Overall what we’ve had to deal with has brought my husband and I closer. In terms of the rest of my family, it’s been a nonissue, or in some respects a positive thing, because people saw that it was (a) necessary and (b) making a difference in my quality of life.
Getting back to your earlier question about HPEN consumers learning from one another: New HPEN consumers are ready for somebody who is coping and healthy-looking to walk into their room with a pack on their back — whether it’s a fanny pack or a big pack. Because often they’re in the hospital with a pump on a pole and they’re thinking that’s what they’re going to have at home. I have had more people say, “Oh my gosh! Look how little that pump is!” They need to know they’re going to be mobile, they can go out to the grocery store if they want to, they can live pretty much normal lives. They’re ready for that very early on. They won’t absorb it all, but it will be very reassuring.
Liz: I visited one hospital where they have patients on ambulatory systems while they’re still in the hospital. But these consumers still gain hugely from somebody who is on HPEN walking in; someone who can tell them they can live a normal life and talk about it. It gives you an opportunity to talk specifically about things that are important to them, not just generic things, and to answer their questions.
Lisa: Thanks so much. In the newsletter, this is as close to a visit as we can get!