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发表于 2003-8-8 09:39
All candidates for transplantation that are on the waiting list are issued a beeper, often called the life-pager. Four of the six respondents included humorous anecdotes about the life-pager in their stories. To emphasize the emotion and anxiety associated with the beeper, and the wait for a transplant I will share a personal anecdote. When my mother was near the top of the transplant list, we were aware that the call could come at any moment. On several occasions during this time-span I would be sitting alone at home in front of the computer working on this thesis, and I would hear a faint beep, beep, beep, etc. from another room in the house. It was always just my father or one of my mother’s co-workers. Nevertheless my mind was thinking, “Oh shit.” The emotion was so intense, that for several minutes my body felt as if I were speeding down a roller coaster too steep to obey any established codes of safety.
R2 shared an anecdote about being notified that the transplant center had a donor organ available. It illustrates what I like to call “the beeper-effect”:
It’s rather interesting, they called me and I wasn’t home at the time and I didn’t have my beeper with me. At Cleveland, I don’t know if it’s like this everywhere, but in Cleveland, they made you give a list of your relatives, a list of your friends, and everybody else where they could contact you in case they can’t get a hold of you by beeper. I was out and I came back home, and some friends stopped by, and I set my beeper off on purpose, and I said to them jokingly, “Oh my god! They got my liver!” And they all said, “Oh R2! What do we do?! What do we do?!” and I said “No, I was just kidding.” you know. [laughter] So we sat there and talked for a while and um, pretty soon there was a knock on my door, and I went to the door and it was the resident manager of the apartment house. And she said, “Mr R2, the Cleveland Clinic has contacted me, and they have your liver, and they would like you to call them.” And I said, “You’ve got to be kidding me.” And she said, “NO! I’m not kidding you. Why would I kid you about something like that?” So it’s just so ironic that I did that. So then I said, “Ok, thank you very much I’m going to give them a call.” I went over to pick up the phone, and just as I was ready to pick up the phone, the phone rang and it was my uncle, and he said, “Get a hold of Cleveland Clinic they’ve got your liver. Call us back and let us know what’s going on.” So I said, “Ok, I will.” So, I put the phone down, and just at that time, the phone rang again, and it was the Clinic, and they said quote, “Where in the hell have you been? We’ve been trying to get a hold of you for the past three or four hours.” And I said, “Well, I was out and I didn’t have my beeper” and she said, “Well get yourself down here as quickly as you can.” I said, “Ok I’ll be there in a couple of hours.” And she said, “No, no, no, no couple of hours. It can’t take you two hours to get here.” I know that you’ve already made connections with life-flight at the medical center to get you down here. So call them and get yourself down here.”
R2's continues to build a humorous tone into his story. He was fairly healthy at the time, and despite the urgency of the situation he had an interesting interaction with the pilot of the helicopter that transported him to the transplant center:
He said we’re gonna cruise over Put-in-Bay. They’re having a sailboat regatta and the boats are just magnificent. We saw them when we were coming in. So we’ll fly around the island and let you take a look at the boats for a little while. So we flew around Put-in-Bay. [speaking fast] Then we got to Cleveland, and by this time it started to become nightfall and he said, “Have you ever seen the flats at night?” He said, “It’s really pretty from the air.” So he said then, “There’s a lot of activity around there at night.” so he said, “Why don’t we cruise around the flats for a while.” so we cruised around the flats for a few minutes. All this time they’re waiting for me to arrive at Cleveland Clinic. [laughter] So, they wheeled me into the emergency room and they said, “We hope you’re R2.” and I said, “Yes, I am” and they said “Good, we’re gonna take you right to your room.”
After surgery, transplanted patients are moved to a surgical intensive care unit and may remain on a respirator for several days. The respirator is a source of fear and discomfort for many transplant patients. Four of the respondents mentioned the respirator in their stories. Despite the fact that before surgery they had fears about the respirator, they smiled when recounting their experiences. Here is an example from R6:
W6: Well we know sign language because his grandma and grandpa were deaf. And uh, his uh, dad has a deaf lady friend. So we know a little. He knows more than I do. So he says to me. He says, “Where’s the nurse, get the nurse in here.” He’s telling me on his hands. “Get the nurse in here.” I said, “Why, what’s wrong?” He says uh, “You tell her I want this out, NOW! Get this out!” And so I laughed and I called the nurse in and told her what he said, and she laughed and said, “Well we leave that in 24 hours.” And he goes, “NO! I want it out NOW! Take it out NOW!” And she laughed, and I was translating what he was telling me, see. It wasn’t too long after that they took the respirator out of him. First thing he says to me, “Did you bring a camera?”
R6: They had all of this equipment all over me.
W6: I said, [laughter] He couldn’t see all of this stuff up here you know, so he wanted a camera, so that I could take a picture. Well that was just not on my list of things to bring down. [laughter]
Crying is a significant part of the experience of liver transplantation. The patients and families I interviewed were most likely to become teary-eyed when talking about joyful experiences. For some families the paramount joyful experience is when they are notified that a matching donor organ has become available for transplantation:
R1: So memorial day weekend hit. And I remember, I just felt rotten. It was an ok weekend and stuff. We were going up to bed, getting ready for bed Monday night. It was like eleven o’ clock, a little after. I had just gotten ready, I had just got done in the bathroom, I think either I was in the bathroom or my wife was in the bathroom. We were both, we hadn’t even talked about it, but I was just thinking, well we made it through this weekend, well you know I wonder. How long is it gonna be? All of a sudden the pager went off. And um, at about 11:45. And, I carry a pager all of the time. I use it for work. It could have been anything, but I knew when I came down here, I just said, I thought they [transplant staff] would just call the house. I thought well maybe one of the plants is having problems. Cause sometimes the oil refineries call, they’re open 24 hours a day. And um, no it was a 216 number so I was pretty sure it was Cleveland, so I called and talked to the coordinator. She said they were ready. [voice trembles, teary-eyed] They were gonna try and do surgery around 10:00 in the morning, could I get in probably by 4:00 would be really good. So, um, that was a very difficult time. You’ve seen it probably with your mother.
I: Sure.
R1: [emotionally] Your executing a plan the one minute. And you’re just crying your eyes out the next uncontrollably. Those five minute cycles just kept going and going and going for about an hour.
R1's experience was similar to that of R2's. R3 and R4 gave only brief descriptions of “getting the call”, but they shared the common element of having made transportation arrangements, and creating a plan. The situation was somewhat different for R5 and R6. They had both been hospitalized before an organ was available. Although R6 was too encephalopathic to be excited when the donor organ became available, his family was overjoyed:
The kids had ordered pizza and I was walking down the hallway with K. and I had left the door open, when we walked down the hallway. I heard a telephone ring, and I got to the elevator, [pauses], and my son hollered out, “Mom, they found a liver!” [voice trembling, teary-eyed] I heard this all of the way down the hallway. So I went running back and the coordinator was on the telephone. And she was crying, and she said to me “W6, we found a liver.” [crying] And I said, “Do you want us to come back to the hospital right now.” And she said, “No, they have to go harvest it first.” and I said, “Where do they have to go?” and she told me, “East Liverpool Ohio.” and she told me it was a 54 year old woman, and I don’t know if she told me more than she should have, but she was as shook up as I was. So she said, you guys come back to the hospital at 6:00 in the morning and we’re gonna get him ready. And then, you know, so you’ll be able to see him before he goes down. After I hung up the phone, we were all screaming and hollering and all excited you know. And I told K. there was no way I was leaving that hotel that night ... I was so shook up. So of course we got to the hospital at 6:00 in the morning, and the nurses were all excited, you know. “You got a liver. You got a liver.” And he was so, [emphatically] out of it. He didn’t register anything.
Another positive emotional circumstance was encountered by all six of the interviewees. This circumstance was the incredible outpouring of support from others. The support of family, friends, coworkers, acquaintances, and transplant center staff, combined with the reality that someone died so that the recipient could live, is simply overwhelming emotionally. R1 told me:
Um, so we called everybody, we got everything lined up. And people were great, [pauses, starts to cry]. It was a, one of those times in your when you [crying] start to realize that society is really good [Pauses, crying].
I: Yeah, I agree with you. It’s amazing the way that people will extend themselves in a time like that. The outpouring of support from coworkers and family surrounding my mom was absolutely incredible.
R1: Yeah, and you know I started to look around and. I’m not that nice of a person. But obviously some other people must think I am, or they must really like my wife and my kids, because people were offering to do things, you know it was, it was just incredible. Everybody! And um, again you know, I’m not the easiest guy to get along with. I try to help people and do my part. But, I don’t think I deserved what I got. I don’t think I deserved as much as I got. People were just, you know, really doing a good job. So, we just sort of um, [voice trembling] hung out and waited. It was a very emotionally restless time.
R1 was amazed at how much others will offer of themselves when he and his family were going through the transplantation process. This phenomena was reported by all of the respondents. In the case of R4, his local community raised $92,000.00 to help with the financial burden of having a liver transplant. Other respondents were stunned by the sheer quantity of get-well cards that they received. This situation was no different for my own family. We have received several hundred cards, and have continued to receive them six months after my mother’s transplant.
However, the emotion that surrounds the extreme willingness of others to offer their support exists in relation to an individual’s self-concept. In the above passage, R1 said that he didn’t think he deserved such kindness. They way in which he thought about himself appeared to him to be different from what others thought. This situation created an inner-conflict, and a sense of gratitude that needed to be fully expressed through tears. The other portion of the interview that evoked an emotional response from participants was Question #10 “Have people asked you any ‘strange’ questions about your transplant? (For example: my mom has been asked ‘ What does it feel like to have someone else’s liver inside of you?” Although some of the respondents simply answered “No.” Others had some interesting (and somewhat humorous) comments:
R1: Right like “you need a brain transplant or something.” [laughter] I’ve realized how. I haven’t had anybody ask me that, um we’ve had people like the Mickey Mantle question where the one reporter asked the doctor at the press conference after the transplant, “what happened to the donor?” He’s dead! He’s dead! You can’t interview him [smiling].
R2: Oh yeah. Well, mine is even funnier. It is along the same lines, but it’s funnier because I have a female organ. And they say, “How do you feel having a woman’s organ?” And [laughter] They told me that my organ came from a 35 year old woman at Ohio State, who had a routine kidney exam and died from the contrast dye. About six years after my transplant I had to have a kidney exam at MCO. I was more afraid of that than I was of having the transplant, because all I could think of when I was going in there to get that injection was, “Oh my god, you know, this could be it.” Because it can kill you, you have to sign a consent form when you have ‘em to take the dye, and that’s how she died. But people always ask that question. But I always tell people, I mean, it was a woman’s organ, what do I care?
R3: Well, I have in mind. I was speaking to some people around the time, some of the tabloid type papers. You know having a GoGo dancers liver or something like that and then after the transplant dancing all of the time. Some people wanted to know if I was eating differently or feeling differently, that type of thing. So, the same kinds of questions. Um, I think the questions about, yeah, you know, “What does it feel like” uh, “To have gotten it, and somebody else died.” I’m sure there were some more.
R4: Nobody has asked me that. Nobody’s asked me that, or said anything like that. I remember when I was little though, somebody said, “Hey, where’d you get that thing in your stomach?” and I was like, “Oh, I got hit by a train.” [laughter] just made stuff up.
R5: [Nods yes, Affirmative] Um hm, um hm. [agrees] I think all of us have kind of been asked because it’s kind of folklore out there that you take on personality traits of your donor. Somebody even, a couple of people have even asked me, “Did you, early on, did you like notice that, like taste anything?” Like, the last meal that the person had. I mean it’s kind of macabre even talking about stuff like that. And of course, “No, no, and no.” You know. That’s a common questions. A lot of questions that I get are, “Do you know anything about your donor family? Would you ever meet your donor family?” And I always say, “If it got ever to that point, it would have to be the donor family requesting.” I would never intrude on them. They did enough. I mean, if they don’t want to know who I am, that’s perfectly alright. But if they asked to meet me, of course I would be more than happy to. So that’s a similar question. Questions about the donor family. Questions about medications. Uh, based on a lot of the misinformation that they might have.
Amidst the pain, suffering, and fear there are many aspects of transplantation that are joyous and circumstances that are laughable. From the standpoint of the interviewees who have undergone transplantation, the experience is often emotionally charged and positive.
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