Helen D. Interview

Helen is the 2nd liver transplant patient in the province of Alberta, Canada. Although she says, "Yes, I felt like an experiment" and the doctors gave her maybe 5 years more to live, she is now in her 14th year with no end in sight.

Helen: I had my transplant in 1989. It was about five years prior to that, well actually six years prior to that, I hadn’t been feeling well. I was run down and my dad passed away and I blamed it on to just being that and just stringing myself out. But actually it was more than that. I had a liver disease called PBC, Primary Biliary Cirrhosis. And at that time there hadn’t been much of those transplants done, none in Western Canada, and so my doctor diagnosed that he said, “Well you have five years to live and there’s not much we can do”. And then he investigated further and at that time the Alberta government was trying to start a program at University Hospital here on transplants. And so he kind of held back, because he asked me, my doctor asked me if I would be interested in transplants. And I said “Yes I would be if I was going to be around to see my grandchildren”. Obviously I didn’t have much choice. As far as I was concerned I didn’t have a choice. So then the care he gave me from then on differed, because then the medication was different and everything. And eventually the program did start here, it started the first of October in 1989. And I was in the middle of having my test work done, and all my tests and lab done. And he put me on the waiting list about a month before I got my transplant. I carried a beeper around and had my transplant. But I had been really really sick. I got, I probably should never have waited that long. When I look back I probably should have been transplanted six months before that. Because by the time I was transplanted I was I was really really weak, and already my osteoporosis was so bad that I rolled over in bed one night and broke three ribs. And I wasn’t absorbing anything and I was losing weight. And not only that but I had night-blindness. I was just a mess. I couldn’t walk, I couldn’t pick my legs up much even just to get up onto the scale in the doctor’s office, we have to step up. I had to have help, I couldn’t step up much more than this. The bone pain was awful. And we didn’t know at the time of transplant what would happen with that, what was the chance that I would always have this bone problem. But they said that I had osteomalasia because it reversed afterwards and I didn’t have hardly any bone pain afterwards, which was a thankful thing. But then after my transplant, just a couple days later, my skin started to turn pink again and my new liver kicked in. You know how it is, the blood work just kept improving and improving. I had my transplant on the 18th and my one daughter had her birthday on the 20th. She came in to see me in ICU and I was strong enough to roll down the paper. What had happened with me, I’d had my surgery but they couldn’t close me up because started puffing up so bad. And so then I was in ICU for five days and they went back in and put a mesh in my abdominal space there and closed me up then. So I was quite puffed up. And then I wished her a happy birthday and she said, “Oh mum, the best birthday present you’ve given me is your pink skin”, ha ha.
Greg: This was so long ago, how much did your doctor know about transplants?
Helen: Well my doctors that did the surgery, well I’ll tell you, Christmas Day I had a bad rejection. I was really really sick. This was done on the 18th and then December 25th was really a bad time. He, I know then, he phoned Philadelphia for help because he didn’t know what to do with me, right? And so he was going back and forth between Philadelphia, the doctors there, to get help, like Dr. C., our surgeon. And I think he got a lot of help from Philadelphia for those first few months of transplant they worked on it. My own GP that I go to here in St. Albert he just sent me to a specialist in Edmonton, an internal medicine doctor, and he investigated from there. Thankful I had him and he knew that the program was starting here. I was upset to a point because I said to him, “Well how sick am I going to be before I go”, because if I didn’t get it done here it had to be done in London, Ontario, which meant I had to be Air-Vaced there. And I was afraid they were going to let me get too bad here and go into liver failure and then what’s my chances if I go to London, Ontario? Plus I knew I needed family support. I really wanted family support. My husband worked out of town, he was out of town two weeks at a time. Every time he’d come home, I don’t know how he handled it, because when I think about it every time I’d come home with my doctors, “Oh you’re deteriorating so bad”. I hate that term “deteriorating”. And when I look back, yeah, it must have been awful. (Her husband says something off microphone). It must have been awful when you’d come home and seeing me in two weeks time and things are getting progressively worse and worse and worse. And then they put me on the list and they were going to do four transplants in Alberta. They had the funding just to do four.
Dean: And they hadn’t done any prior to this in Alberta.
Helen: None.
Dean: How many in Canada altogether?
Helen: I don’t even know. I think there’d been a couple done in Vancouver, which weren’t really too successful. And other than that they did none in Western Canada. Everybody went to London, Ontario. And I was having esophageal bleeds all the time. And I would be feeling fine when I would have esophageal bleeds, but I could tell my stools were darker, whatever, and I didn’t like going into the hospital, and being there for two days and being pumped full of blood, and then home. I don’t know how many, but we kept track. I had 24 units of blood just for esophageal bleeding alone, right? And so it was back and forth between the hospital with that. And I remember one time I was in there I was carrying my beeper, so it was within a month of my transplant. I was carrying my beeper because I was keeping it. I was in the blood hospital, you see, being treated for that, and carrying my beeper to be called to the other hospital if a liver became available. And so I was quite concerned that I wasn’t going to get to be one of the four. I kept thinking, “Oh my goodness, I wonder if somebody else comes along and they’re worse than me”. And I mentioned that to a doctor one day and he said, “No, you are guaranteed that you will have a liver. You will be one of the four. Because you’re to the point now where if you don’t get it you are going to be Air-Vaced to London”. So that eased my mine there, I knew I was going to get it and be done.
Greg: After he told you that how long a wait was it?
Helen: About a month. I was lucky then, I was really lucky.
Greg: It sounds like you were lucky that you had a doctor who knew that this program was starting.
Helen: Yeah. I went to a medical clinic in St. Albert here. I knew, ha, I knew some of the better doctors around. And so when I was sent to this fellow I knew that he knew what he was doing. I had more than enough confidence in him. And that’s important. That’s important. And then when he brought up the idea of transplant. Transplant was not a thing mentioned, you know. And he says one day you know, “It doesn’t look good. You maybe have five years”. And then it was about six months later I’m in there visiting for a visit and he says, “You know what? Would you consider transplant?”. And I thought, “Well I don’t know.” And so he explained it to me. He said, “I think they’re going to start doing it in Edmonton here. Maybe you can hold out and you can have it done in Edmonton. If not we’ll send you down to London. And would you be interested?”. And he brings a whole bunch of nurses into the room to ask me this question. Anyways I had no problem, I mean I was never worried about the transplant part of it. My concern was don’t let me go so low that I can’t come back up again. I know from the way I was going down hill that I probably would not have seen Christmas. Because I was done on the 18th of November and, I don’t know, I was just feeling really really bad.
Greg: Did you feel like an experiment? Did you look into the process?
Helen: Yes I felt like an experiment. But you know what straightened me out on that? This was another time that I was sitting at the hospital room and I was talking to one of the nurses about it. I said, “You know I just feel like I’m a guinea pig because it never had been done here before”. And she says, “Oh look it my dear”, she said, “don’t worry about that. They want that funding so bad, and they want that program started so bad, they won’t let anything happen to you”. Ha ha, and you know from that point on I really didn’t worry about that part. Because, yeah right, it’s a political thing anyway. You know, if they want this program started here, they’re going to do their best to keep me up. There’s another gentleman, Jim E., he was the first one done. And we had gone through the assessment program together. And we were just we were just sitting waiting and we had our beepers, and it was just a matter of what became available who would get it. He was bad off too, and we often laughed about that. And when the doctors would come in to do us, these young fellas that looked the age of my son, and Jim said to me one day, “Man, I feel like Old Man Moses when these doctors come in here” ha ha.
Greg: How did the others fare?
Helen: The young man, the university fella, who was done second, and he passed away. He had so many things. He had the disease where you’re high in copper, and he was really really bad, and he only lasted a few months. And at the time they did him even I don’t think it was going to be too successful. But he passed away, and Jim and I did fine. Who was after who was after me, I forget. The program was so new that we wore T-shirts. We had them for get-togethers, T-shirts with “Number 1” and “Number 2”. And then the number got higher and higher and then we quit doing that. We were really close for that first 50 of us maybe, eh? But everybody did well, I mean most did very well. I think their percent was 85, 87 percent at one time. I think it’s still very high. The success rate for liver transplants. I know some that had lots of complications. I myself, I’ve had rejections. I was in the hospital for 69 days altogether. Now I just, my gosh they go in there, they’re out in a week, two weeks.
Greg: Was it common back then to be in the hospital that long?
Dean: For her condition, at that time, yeah.
Helen: But nobody knew. The program was so new they didn’t know what to expect, right?
Dean: Her bones were so brittle. I could stand back and count the ribs on her back. But everything hurt so much that guaranteed her, when she was in there she had an airbed. They ordered one especially for that, so she wouldn’t be in pain as much.
Helen: Yeah, the pain was awful. I had more pain…
Dean: On the first floor they spent a lot of time going through psychological exams, how do you feel about it religiously, and how does it feel physically. And there were things that we mentioned to them. They used to draw big vials of blood for testing. Why do they need so much? So they started using smaller ones, because all they needed was a little.
Helen: I think they have the whole program so streamlined now…
Dean: Now people go in and they are out within the week.
Greg: I was supposed to be out in about a week to 10 days, then I had a couple complications and I was in a month. But, yeah some people are out in about a week, and it’s amazing. Now that you know what the procedure is today, what did they do with you that was different? I mean, what was it like “in the old days” so to speak? In the pioneering days…
Dean: Ha ha ha ha….
Greg: …with the covered wagons and…
Dean: Ha ha ha ha….
Helen: You sound like my kids, are you robbing the grave, ha?
Greg: As a transplant patient this is very interesting to me because I had mine just three years ago.
Helen: Well you see, for one thing there was only one anti-rejection drug, Cyclosporin. That’s all there was. Either you make it work or you don’t. And I had trouble absorbing it, so I was taking oh (gasp)….
Dean: Primacedin came up one day…
Helen: Tremendous doses of it.
Dean: It was the only stuff at that time. It was an inexpensive drug but flushing it down the toilet? Why were we doing this? The pharmacy came up to check that, but part of it was having to do with the absorption.
Helen: But see there was only one drug so we had to make it work somehow right? Like now they have so many different ones now they can. But we were stuck with Cyclosporin and somehow we made the system absorb it. (unintelligible). Then about six or seven years ago, and to me it’s hilarious, because they come up now with this idea and I had been told that many years ago by somebody, an older person, that if you want your drugs to react more quickly drink grapefruit juice. And now they tell us up here, I don’ t know what they tell you, don’t have a drink within an hour before or after you take your drugs, eh? Guess what I was taking my Cyclosporin with at the time? I was swallowing it with grapefruit juice in those days.
Greg: They told me not to drink grapefruit juice at all with the Prograf.
Helen: Yeah, and you know, sure it wasn’t absorbing. For one thing the grapefruit juice every day was helping push it through…
Dean: And the way they were doing it was to take it all at one time instead over a long period.
Helen: Anyhow, that was one thing that was different…
Greg: So once you stopped taking it with grapefruit juice you were OK?
Helen: Well we didn’t know that though. Of course it was all liquid then too, it was only a liquid drug. And it had a terrible taste. It tasted like skunk. But it was awful for me to take. But some of the guys, like Kathy was one of them, and I think two or three of the fellas, they would just take it by a syringe and shoot it in the back of their throat and swallow it. I couldn’t do that. I had to mix it with something. And I didn’t like milk. And so it was hard getting the drug in a lot of the time. Now they have pills, I think they came out with the pills about 10 years ago or something, and you just swallow that. And another thing was at that time it had to be a combination of an anti-rejection drug and Prednisone. You had to have Prednisone. And then Immuran was another one. And everybody’s blood pressure would be affected, so we had to go on Cardizam. Well, now they don’t do that. In fact they don’t even put you on, so I’ve heard talking to them, I don’t know, Prednisone. They’re trying to keep the Prednisone down to a very minimum now, you’re usually off of that in a few days. And Iike I said last night I was on it for seven years. And then Immuran, I couldn’t tolerate that, so I’ve never been on a combination. I’ve only been on Cyclosporin and then they changed it to Neocyclosporin, which is a little different. The Cyclosporin before was more oil in it, more of an oil base, so that’s another reason why it wasn’t absorbed. And so now the Cardizam made my heart go too fast, so I shouldn’t be doing that. So I think now the drugs they use are different, the combinations are different, and they have more to choose from. In fact I should ask one time how many anti-rejection drugs they have available now.
Greg: Well I’m on Prograf, and that one seems to be the one I’ve heard, for liver people especially. I’m not as familiar with other transplants, but Prograf is the one they put me on. And I was in a study for a while for another one, uh Prograf is also called Tacrolimus, and I volunteered for a study for one called Sirolimus, which is used for kidneys already, and it’s been approved for kidneys. And they wanted to see if it would help liver people. And somewhere in the study in the United States one person had a problem and they pulled the plug on the whole thing, for the liver part of the study. But as far as an immunosuppressant that’s the only one I’m on. What else are you on besides the Cyclosporin?
Helen: You’re on Cyclosporin for that, for my liver.
Greg: What else do you take? Vitamins? Other prescriptions?
Helen: Well…
Dean: Ha ha ha….
Helen: …there’s another part of my story I might as well tell you. See they tried me on FK-506 too, which is another anti-rejection drug. FK-506 sounds like some science mission or something.
Dean: Actually, on your rejection on the 25th of December, that was an experimental drug.
Greg: Yeah, that’s Prograf.
Dean: Yeah, you had to get, or I signed the signature for, and you hadn’t had any repercussions from it, and it just took the top of her head off when they gave her the injection. But that was a new experimental one at that time. It’s the only one they had to try on her.
Greg: It makes you pretty crazy. That’s what they put me on, and they put you on a high dose at first.
Dean: But it worked. It did its job.
Helen: But you see a couple years ago my alkaline phosphates started running high again, and so then I had to go back in for a biopsy. After a few biopsies and finally Dr. B., whose the hematologist there, said he wasn’t satisfied. He was coming back saying everything is fine, everything is fine. So he sent it down to Minnesota, to a special lab or something down there. And they came back showing that I had PBC again, that my liver was being attacked by PBC. So I have that disease again. And I’ve been taking a drug called Ursifalk (sp), which a lot of people take when they have gallbladder trouble. The drug was not here when I initially had my liver problems in the beginning, they didn’t have much of any of this stuff. Anyways, so I take Ursifalk (sp) too and it’s brought my alkaline phosphate down, it was up to over 1100, brought it down. I got my results the other day and it’s 252. It’s been down lower than that, but I’ve been taking it now for four or five years eh? But it’s gradually been bringing my alkaline phosphate down. And so I really keep tabs on it. How often do you have yours done?
Greg: Every three months or so.
Helen: They just moved me last year to every six weeks. I used to get mine once a month. But we keep watch on the alkaline phosphate and the bilirubin, because if they ever start going up again I’m going to be in trouble. But so far, maybe I’ll just get to be an old lady and never have that PBC stir up again. Because I know a few ladies that had got to a certain age in their life, that had PBC, and it just never got out of control. And then they got old enough that it wasn’t a problem any more, eh? Hopefully that’s where I’ll be. But I am taking extra stuff because of that. I take Ursifalk (sp) for that. I take Losec because my esophageal bleeds, when they did my esophageal, I had all those esophageal bleeds, that part of my esophagus is really scarred and it seems like I need Losec to settle it down. I go off of Losec for two or three days and it resumes. So I’m on Losec for that. I take iron because my iron is always low. I take iron and uh Losec, calcium supplement for osteoporosis. I go in for Parmedreed (sp), which is an IV drip. I do that every three months. That helps the osteoporosis because I can’t tolerate the Phosomax or the other drug. So medication-wise that’s all I’m taking.
Greg: Well after your transplant and you were out of the woods, so to speak, and came home, I guess I would have felt like I was part of an experiment. I didn’t have any, would have no references to how long people were going to live. And I don’t now, still, I look at people like you who have had a transplant for a long time and I think, “I hope I make it that long”. What did you think?
Dean: Can I put a little bit in here?
Helen: Sure, go ahead.
Dean: Prior to having her surgery, she found out from the doctor that she had the PBC, and was given the approximate given time. You see things starting to go down hill. And they went down gradually. I worked up in the Arctic on three 10, three cover days. And as it went down it got to a point where she turned over in bed one night and broke three ribs. Uh all her joints and all her bones, everything, were so sore. So we lived in a place with an extension on the back porch, and you had an extension to go up into the kitchen. And we made a set of stairs out of 2 by 12’s, and just put one on top of the other so she would only have to go up an inch and a half all the way up to the steps. Through out the back landing we had two stacks of blocks. And for the one block one foot, one on the other. Just rock forward all the way up the stairs. We never took a picture, he have no camera shots or anything of those stairs. After the surgery, I was up at the mine when she went in for the surgery. And I came out and I was talking to the doctor and he said she’ll be walking in six weeks. And it wasn’t long after that, because we were out in the back yard. It was Spring. The phone rings and she took off running. She didn’t realize it. So it was little things like that where you have to see the deterioration in order to see the reverses. And the reverse was way faster. Way faster. And yeah we took pictures, you know, skin color…
Helen: If you want to look there, there’s some (showing her book of pictures). That’s what I pass around. There’s not very many in there but I think it’s a enough when I talk to a group just to show them the changes.
Dean: Yeah, I didn’t mean to get into a whole big pile.
Greg: 1989.
Helen: Yeah, that was out daughter’s wedding. And that’s when I should have been transplanted, I’m sure of in the Spring. I probably would not have been in the hospital for that many days. Everything. My system wouldn’t have been so worn down. But by that Fall it was bad.
Greg: How did you son and your children handle it?
Dean: We sat down and we said, “This is the election”. And I said the doctor had said the treatment, depending on whether you decide just to ride it out, although eventually we’re going to… the transplant is going to be different. The other thing I didn’t do for a long time, and we sat them down one night and said, “OK, here’s what we have to decide on”. And I think… what we did, we took a vote so that no one in the family could blame somebody else if something went wrong. We voted. And if the vote was unanimous, there was no way at any later date that you could turn around and blame the other person for saying that you should have had it done the other way. And we took the vote and it was unanimous. There was never any question. Any problems, we decided then.
Greg: This was before transplant?
Helen: Unknown to them, though, there was no way I was not having that transplant.
Dean: Right, but the thing is…
Helen: Ha ha, they could vote all they wanted ha ha.
Dean: If you had gone in and any complications had resulted in, say a death, then you wouldn’t have one or two blaming the others for saying, “Well you should have done it the way said”, right? That eliminated that whole, uh being unanimous everybody followed the same path. They all worked toward the same thing.
Helen: They were very supportive. They couldn’t have been any more supportive, all of them. We have four children. And at that time they were all living around here, and still are.
Dean: Now they bring the grandkids in and say, “Could you look after them?” ha ha. That’s why you wanted the transplant, so you could see your grandkids.
Helen: That’s right, and there are nine grandchildren now. Nine of them I would never have seen because we didn’t have any at the time of the transplant. And that’s really shocking because the oldest one went into junior high school this year, ha ha. Oh my lord! Yeah.
Greg: Do you ever have any of your physicians, or any of the physicians at the university, have you get together with other transplant patients from that era? Or with new ones to give them a pep talk?
Helen: We try to, ha. The biggest one we did was on our tenth anniversary, yeah the tenth anniversary, which is gosh that’s going back almost four years ago. They did have a gathering in Edmonton, the doctors were there, and any patients that could come came. And it was really interesting because some of the I hadn’t seen for years and years eh? And it, yeah, it’s really rewarding.
Those kinds of get togethers are always so much fun and so positive. Like the room is just full of positive feelings because everyone is so happy to be alive and happy to be there. But I get a lot of that, and I guess that is what I grow on, is that positive feeling from others. I get it when I go to the meetings. In fact it was so interesting to have you there as a guest and, ha, running all over town to find a place to have our meeting was kind of different too. But sometime you know maybe you haven’t had a good week or something, and I go and I miss that group. Or I go sometime, when I’ve been asked to speak at a school and tell my story. I come home so elevated, like I just come home…
Dean: Charged…
Helen: Feeling so good. I feel every time I talk to a group or anything about transplant, if I have moved one person toward signing their donor card I’ve done my job. If I only get one out of that group of 50 to sign then I’ve done my work that day.
Greg: Any time I feel a little discouraged about trying to do what I’m doing now I always think, “If one person…
Helen: That’s right.
Greg: …just one person, you know, it’s worth it.
Helen: I know that’s all…
Greg: After all the years of doing it, if it’s just one person. It’s gonna be more but you know. But those days when you get discouraged can be discouraging, ha….
Helen: That’s right, and that’s what you have to be, that’s what keeps you going…
Dean: And more so because you’re not in a physical condition, that you can realize that it’s a pressure you can think you can handle. It becomes that much more of a pressure.
Helen: Sometimes I do get tired. Like sometimes I think that PBC is there, sometimes when I’ve overdone it I do run out of steam, and so I just lay back for a couple of minutes.
Dean: We try and joke through quite a bit of it. We did, even when you were on a deterioration we’d go to the mall and she’d start walking and I would imitate her and walk behind her that way, ha ha.
Helen: And my family has a good sense of humor and I think that gets you through a lot.
Dean: You have to have that…
Greg: I think of that too. Would you talk more about that? I absolutely agree with that…
Dean: Oh yeah!
Greg: …It would be nice to hear the way you do it.
Helen: Well…
Greg: You got him for…
Dean: I’m more of the jokester, I guess. I do it even at work. You (Helen) tend to walk down there and walk like a monkey. But initially she had the one limp on the one side. She still has but it’s not as bad. But I have a daughter, who is probably as large as I am, but the both of us would do the same thing. And she (Helen) would turn around (Dean makes a “that look” kind of face) and try straightening up. But it was always gimpy.
Helen: When I look back on it now they made me, but they had me do things, and you know it really was a therapeutic thing. Like we had a little deli store here that had a little coffee shop in it. Well you know it hurt so much to get into a car to go somewhere because I had to use a wheelchair when I got there. And the whole thing, it was a lot of work to just go for a cup of coffee and back home again. But we said we’re going over to Zeller’s for a cup of coffee. So, oh man, away we’d go. And what a chore that would be. But that was good. That was really good to do that. (Link to my story about Photoshop class with pic line ***)
Dean: You went from a limp, to a cane, to a walker, to a wheelchair. And each one of those levels as you went down, you became more of a burden. And yeah we’d get stiff backs once-in-a-while lifting the wheelchair and going to the car, and tripping over the walker as we’d park. We still have the cane, we still have the walker. The wheelchair is gone. But when you look back all these things were necessary at that time. But they were only tools to help you do the job. And so what if you walked and you’re pushing somebody down the aisle in a store in a wheelchair. It’s the person in the wheelchair who feels, really. But there’s so many people who tend to look away. And it’s not just with… but you can go in there and move the chair out of the way and put the wheelchair in place, and you can sit there and you can gab and listen to everybody else chat, and talk, and tell jokes, and take off when you get tired. But off we’d go.
Helen: But the humor thing, I’m just trying to think of some of the things that were kind of humorous. I remember one thing that was kind of humorous, was our youngest daughter, Darlene, she was still in high school. And I think my illness was the hardest on her because she was still at home. In fact I’m learning more all the time how difficult it was on her. And she’s a mum now with her own children and everything. You know, in so many ways she helped me a lot, and because she was a larger girl she could handle it because I didn’t weigh that much. Anyways I liked to go shopping, and she’d take me shopping. But because, as we were talking last night (at the CTA meeting) I’d have some tea at dinnertime afterwards, and I’d have to go to, it would go right through my system. So I was always going to the bathroom. So we had it planned out, ha ha…
Dean: Ha ha…
Helen: …we never went anywhere that we didn’t know where the bathrooms were located, ha ha. Well, we’d park the car in a certain place so that we’d be close to wherever there was a washroom. We’d go to the mall. And you know, laugh as you will, but that was very important because we could go and have a less stressful day and get something accomplished, because we knew where the washrooms were. And for sure I had to go there two or three times on our little jaunt to the town. But Darlene had it all figured out: where we could go, where the washrooms were you know, and oh yeah…
Greg: It was almost like she had a map eh?
Helen: Yeah she actually had it all figured out for me. But you know, that was part, that’s the way it was, so let’s do it.
Dean: Helen had to go to that (CTA) meeting one night and there’s no elevators working to that floor, ha ha. So, my son was there. I was up north then. And I don’t know but somebody helped them but the group carried her all the way up the stairs.
Helen: This was a big meeting and Dr. C., to this day, he’ll never forget how embarrassed he was that day. Because they called for this big meeting, and it was about transplants and they asked for those waiting on the waiting list to go. And they were just starting to set the program up, and it must have been in about September when they had this meeting. And they had it in kind of an apartment complex, but the top floor they used for meetings. And the top floor was the 13th floor and the elevator didn’t go that far. But nobody thought about that, and they knew I was coming. And they’d ordinarily go up to the top floor, and walk up the last set of stairs. So I wanted to go to the meeting. I was really upset because I couldn’t go up. And the boys said, “Well we will carry you up”. And I was really apprehensive in the wheelchair. Because my bones were so sore, if you bounced over the curb or something or man it just hurt so much. And I was always just gripping onto the handles and all this. And I said, “You can’t carry this wheelchair”. “No we won’t carry the wheelchair. We’ll get you an armchair and we’ll carry you up”. And there were quite a few young guys, big fellas there, my son was one of them. So I sat on an armchair like that, and they carried me up the flight of stairs, around the bend and up. And through all of it, oh man, I was so scared. I was just white when I got up there. And my son said, “Mom we won’t let you drop. We won’t let you drop”. That wasn’t the point. I trusted them. I guess I didn’t trust them but, anyway, we got up there. Well Dr. C., when he seen me arrive in the chair, and then the wheelchair, oh he felt so bad. It hadn’t dawned on anybody that I couldn’t get up the stairs, eh? And this is a meeting regarding the transplant program starting, the operation, and the whole thing. Anyway, that was an experience and we still laugh about it.
Greg: I believe that you said there is a lady in Ontario who has had a transplant just a little longer than you?
Helen:: Heather Fisher, yes.
Greg: How long is hers?
Helen: I think she’s 20 years, or she’s coming up 20 years, yeah. She was the president our transplant association for years. Now she’s not president, now Janet Green is. But she’s our representative to the World Transplant Association.
Greg: It seems to me that when I had my transplant three years ago that the longest liver transplant then was about 15 years as I recollect.
Dean: They told her 10 years.
Helen: But human nature, and human beings as we are, and how we think. At the time of my transplant I thought, “Oh, if I could just have five more years”. Five more years. And I remember, I always go in for my checkup in November. And I remember going in there and saying to Dr. B. you know I said, “I prayed for five more years but I feel guilty now”. I says, “You know my five years are here and I want five more!”, ha ha…
Dean: Ha ha.
Helen: …and you know I’ve gone past that already.
Greg: You’re working on 15.
Helen: That’s right, yeah. Yeah, and so you know human nature as it is, we always push it a little bit farther. But I do remember, when I was first transplanted, I went to a meeting. And nobody seems to know who this lady was. She was somebody who never came regularly. And she said that she had been transplanted 25 years ago, at that time, in the States. You know I’ve never seen her again, so I don’t know. But I never hear anybody more than me other than Heather Fisher.
Greg: What do you owe your transplant longevity to?
Dean: Argue. Fight. Scrap.
All: Ha ha ha.
Dean: You know that’s part of it, ha. That’s part of the joking fun.
Helen: What do you think (to Dean)?
Dean: You want to see the grandkids. That was the initial, “I want to see the grandkids”.
Helen: Yeah, that’s always been it.
Dean: And the day when we were out in the backyard there and were looking in the flowerbed, and the phone rang, and you took off running. You came back out and I said, “Do you realize what you just did?”. “Think. Come on think”. No she couldn’t figure it out. “You ran”. Everything just stopped, right like that. And then after that she was out jogging.
Helen: Ha ha…
Dean: But it’s little things when you spot the improvements and you go, “Wow”, right? And yet after a while it becomes clouded. Because there are so many things that you look forward to, and you do, and you go ahead and do them. Some of the stuff you look back, like the stairs up the back…
Helen: Well yeah…
Dean: The time you just bumped your foot on the curb. Then after the transplant you got into the World Transplant Games…
Helen: You think so?
Dean: That’s probably the incentive.
Helen: Yeah, I had never golfed a day in my life. Now this is something, this is the first time I really got an inspiration. I had my transplant in November of ’89 and this must have been within a year and a half of my transplant. I was asked by the HOPE if I would go with them and speak to, it was one of the first times I was asked to do anything like this, speak with them to a group of nurses that who worked out of the hospital. They were on the harvest team and harvested organs. And they said they never had seen anybody that had done so well. And they said they go and do all this work but they’d like to see the results of it. So I went with them to the HOPE program, and I didn’t do that much talking that day, I just basically told them what had happened to me. But they showed a video there of the American Transplant Games that were held in LA that year. And all these people running and doing stuff. And I never had been an athlete, I’ve never done field running. I played basketball at school and baseball some, but that was it. And oh I thought, “Oh man look at that”. I was quite taken up. And then they announced that there would be the World Transplant Games in Vancouver that year. And I thought, “Oh boy”, the chance that I could go do something. I mean just because I have a transplant I don’t have to stay home. Because before then I got so that I didn’t want to travel very far because of esophageal bleeds and that. So we didn’t have any long vacations or anything, we stayed really close to home…
Greg: And worried about germs probably…
Helen: Yeah, and just everything. So here’s a chance we could go. We could drive there, it’s only to Vancouver. I came home from that meeting that day and I said to him, and I’ve never been someone to say, “Hey, I want to do something right now”. But I came home, “I want to go to these games in Vancouver!”. “What games? What are you going to do?”. I said, “I’ll find something to do. I’ll take part, I’ll do something. If you take me out there I’ll do something”. Then I thought, what am I going to do? I can’t swim, what am I going to do? I’ll learn how to play golf. So he goes up to the mine for two weeks, and when he’s gone I get the newspaper out and I find someone who is selling a golf set of clubs and bags and that. And I bought it. And he came home one night and I’d enrolled in classes and I was going to run out and play golf, ha ha. I don’t think he could believe it. And so I did. I learned how to play golf. And he got quite interested too, and it’s a lot of fun playing golf a lot. I went to the Games and I won a Silver Medal for Canada.
Dean: I was at the Games for the humor. When we out there, there were 800 athletes, and what was it a thousand meters? You see all these people jogging around the track, right? And they were ready to start another race, and they’re still coming around on the last lap, so they could start a race. At the end of it a lot of the athletes passed the stands and we were videotaping. When we got home we went over to one of the other party’s houses and we looked through this. (Dean continues unintelligible).
Greg: It sounds as though your transplant not only saved your life but changed you.
Helen: Oh I can tell you that for sure, your priorities changed. I don’t know about you, do you have a family?
Greg: Yes.
Helen: Do you have kids?
Greg: Stepchildren and a wife.
Helen: Your priorities must have changed.
Greg: Absolutely.
Helen: That’s right….
Greg: I went from Hollywood to doing this.
Helen: OK, and you know the priorities have to change. You’ve gone through a complete turnabout. And uh my priorities have. I’ve been doing things so different for so long now that it’s hard for me to remember what it was like before. But I was so ill before that I couldn’t carry on. I do a lot of things that I wanted to do of course. But after my transplant I’ve been able to do things. But even your thoughts about things. I don’t think it is so important to do material stuff like it used to be. I mean, it will get done eventually or whatever. Some things are just not so important any more. Family is important, growing, and sharing with people, being with people. I try not to miss anything where I can go and if the HOPE program calls me I try to go there. I try to help. I think that’s more important to do that. That’s what my focus becomes, is to share, is to share with people. And stuff with my kids, my kids have grown so much. My kids, they’re all young adults with their own families now. But that was going to change regardless, whether I had the transplant or not, right? So what changes becomes what’s in yourself that you have to deal with.
Dean: But look at what these families have now that they wouldn’t have had.
Helen: Oh, true.
Dean: If you sat and see what the impact of one donor makes, it’s all it is. And because Dr. C. and Dr. Bane and the program at the U of A treated her a little different than, like you say. The first one they’re going to make darn sure that nothing happens, ha, you know? And there was a different kind of bonding with those doctors than what you see now. Doctors are, like they’re building a whole new thing for hearts now. But at that time there was a lot of close-knit because there was only a few of you coming out first and they were going to keep them as (unintelligible).
Helen: I feel very fortunate to be where I was at that time in my life. We could live down in Eastern Canada and we moved around and wound up back here. Now that I look back I’m so thankful that we were living here and that the program was at this hospital. And I was where I should be at the time in my life when I needed all this help. (More unintelligible).
Greg: So what are you looking forward to now. Before it was the grandchildren. You wanted those five years to see your grandchildren.
Helen: Mmm hmmm.
Greg: Now you’re working on your third five years. What are you looking forward to now?
Dean: Well this is going to be interesting, ha ha.
Helen: Ha ha. I’m still interested in enjoying watching them grow and branch off to do what they have to do. But we have some trips planned here. We’re going to do a bit of traveling again, a bit of that. We’ve done, well we have done some because we went to Manchester, the Games in London, we toured there for six weeks in Australia. It’s been a few years since we’ve done anything so we have a little holiday coming up
Greg: And pretty soon you’re going to be working on your fourth five years.
Helen: That’s right. That’s true.
Greg: And when you come out to California you’ve got to come out and visit me.
Helen: OK. We just may be down there, you know. We talk about doing these little trips that way. We haven’t got any major ones done yet. I went on a Caribbean cruise here a few years ago with my mum and my sister.
Dean: You like going to Vegas too much though.
Helen: And I like going to Vegas when I have a chance, yeah. But I guess that’s what I’m looking for, to just do what I’m doing now. Like I really like to be with people talking to people…
Dean: The thing is the World Transplant Games has made a big difference for us too. By getting involved in those sports, and then having registered, and you go to these places, you’re not only seeing another country, the people, you’re going with other participants. Myself, I’m only an accompanying person, that’s what I’m listed as, ha, that’s what our tag says.
Greg: You’re “The husband of…”.
Helen: Yeah, ha ha.
Dean: But when we’re there what I really like watching is… you see all the transplants get together, and it’s the same thing right now. “What are you on?”, “I’m on Immuran”, “Oh, how much of those pills do you take? How often do you take them? What do you take them with? What kind of allergies do you have? Do you get this?”. And you sit back it’s like all of a sudden we’re just not there.
Greg: Mmm Hmmm…
Dean: And you see this every time you go to one.
Greg: Yeah.
Dean: It’s like you’re in, you’re from outer space, you’re a whole different species, right?
Helen: But you see this bit, like um…
Dean: Right.
Greg: Do you ever feel left out then or do you just feel like watching?
Dean: No, I don’t fee left out. Because if it hadn’t have been for that I wouldn’t be there to watch, ha. When she first had it, the hospital used to ask her over so that some of the nurses could see, and she could say a few words to some of the doctors. And inadvertently little pieces of information dropped out. We know that she has a man’s liver. We know the general area where it came from. The whole program, I mean it’s anonymous, so we could probably track it down if we wished to do that. But to what end? She is in contact with the donor, and they replied, but everything is cut out so you don’t know. But even the fact that you get a reply back, they must feel - at least I hope they feel - every year they get anything, this has gone of for what 12 or 13 years, that it’s been worthwhile. Right?
Helen: The first three years I wrote to my donor family every six months. And then after that,,,
Greg: Did they respond?
Helen: Uh, three times they responded to me. And now I do it on my anniversary date. I always send a card and a letter. How many ways can you say “thank you”? And I take special care in looking for the right card, to say the right thing. Sometimes that takes quite some time. And I keep copies of all that. And uh I tell you, when it comes to that time of year, you’d think you’d get better at it. But it comes that time and I have to write the letter and, you know it’s that time of year, and it’s on my mind a lot. I never can do it during the day. I never can get straight down to it. I’m usually up late at night, two or three in the morning or something, I’ll get an inspiration, and I’ll write this thing. And you know what? I’ll put it aside, and the next day and I’ll come up and the next morning I read it and it’s almost the same thing as I’ve written how many times before. But how many ways can you say “thank you”? And you’re so limited to what you can say, because when the HOPE program reads it and they’ll cut out any part that this family could find out who I am, eh? So anyways, it’s quite emotional thing at that time of year when I go through that. And you know I go through that every year. And I think you know what, what I think of is that if there was a mum left with a four year old daughter, well now that daughter is almost 19 years old now, eh? And anyway, I still do that. And you know, I know folks who have been transplanted who have still not been able to pick up a pen and write that first letter. And it’s kind of a frustration inside them, because they want to do it but they just can’t do it. And I’m so thankful I was able to do it.
Greg: I had my transplant in October, on October 17th , and I was in the hospital until the 17th of November. And Thanksgiving was right after that. So on Thanksgiving I wrote my donor a letter. But I never heard back.
Helen: A lot of people don’t. I didn’t right away. It was probably a year and a half after that I got my first letter back. And then I got a card at the next Christmas. And then she sent me something here, a few years after that, but the HOPE program cut a big hunk of it out. And I was upset. I knew the HOPE program…
Dean: Ha ha ha…
Helen: I complained because it hurt me. It hurt me because she wrote the letter and was saying whatever, and so what happened she’d finished the sentence and they cut off, they just cut everything off. And that’s all I got. There was nothing. There was no signature, not that she could sign it. Nothing saying, “Take care for you”, “Goodbye”, “Sincerely”, whatever. Nothing. Because they cut everything off. I called the program and that this is what happened. And they said “Well, you know we have to this off”. I said, “It isn’t right what you did”. I said, “You have left at least the signature, at least how she said ‘goodbye’ to me at the end of the letter. You didn’t leave anything for me”. I said, “I’m excited. I’m reading through this, and I come to a cut off page”. Oh, they apologized profusely. Within a week a got a letter from the HOPE program with a little piece of paper…
Dean: Ha ha…
Helen: ha…with your last sentence with her saying goodbye to me. You know, that really bothered me that they cut that off.
Greg: What did she say?
Helen: She said, “I hope you’re doing well” or something. Nothing really special. But from reading the letter I needed an ending to it. Ha. And they just apologized and they sent it to me, apologized that they should have left that last sentence on. It wasn’t right to cut it off.
Greg: Just listening to your story, it felt all of a sudden just dropped off the cliff. You’re reading, you’re excited, you’re turning the page, and you get to the last page and there’s no end to the story.
Helen: Ha ha, that’s right…
Dean: Well, you have to make up the ending itself. That’s not fun.
Helen: No. I complained and I felt by complaining I was being pretty petty. (unintelligible). Obviously it proves that they kept that piece of paper, right? They didn’t throw it in the garbage. They filed it away somewhere in their office there, they have the end of that letter filed away. So they were able to go in and just cut the end of it off and send it to me. But that was something that I was upset about and the way they handled it. So you can write to your donor family but you haven’t heard back?
Greg: Well I have go through the transplant coordinator also.
Helen: I like the idea of that, really.
Greg: I turned 50 a few years ago, and I was talking to a friend of mine a while back and he was just going to turn 50. Oh, and he was so depressed, “Oh, I’m going to turn 50. Oh, I’m so depressed”…
Helen: Ha ha…
Greg: And I said to my wife, I said, “You know, Janet, I turned 50 and I’ve had my transplant, and every year that I have a birthday I’m glad I had another one…
Helen: Yeah, that’s great!
Greg: …so I’m 52, and I go, “I had another birthday!”, not, “Ugh, I’m another year older”. I’m adding another year, which is great. He’s subtracting. Every year he gets older than 50 he’s dying.
Helen: He’s going backwards.
Greg: Yeah.
Helen: Yeah, I know. I know people like that too. In fact I know a friend who had a transplant, he had a bad time. But up until he started going down hill with some of his own problems he said to me one day, he’d had his transplant already for a couple of years, and it was a liver transplant. He said to me, “Do you think you’re ever going to feel normal again?”. Ha. “Normal again?”, I said, “What do you call normal, Norm?”. I said you know, “I don’t know what your normal was but my normal was not being sick and not being able to get out, and not being able to do all this stuff”. I said, “I’m feeling 100% better now and I feel that I’m better than normal now”. So I said, “I guess it’s where you want your normal to be, but I’m better than normal and I think you are too!”. And he stopped and looked at me, I don’t know what he meant by asking me, “Are you ever going to get back to normal?”.
Dean: You never will because it’s a whole different path. It’s a lifestyle change. It doesn’t matter….
Greg: My priorities are a whole lot better as far as I’m concerned. I got back in touch with God more because of it. The whole experience, everything is better.
Helen: You learn from that.
Dean: Something I have noticed, and we’ve talked about this. If you watch, people that come out of transplant, I mean heart, kidneys, liver, whatever. Within what, six months, of the transplant, all of a sudden it seems like somebody has lit a torch and they have to go. We have one fella he wants to do a footrace all the way down to Chalaby. Other ones are roller-skating across Canada. Other ones are climbing mountains.
Helen: I went to the Transplant Games in Vancouver, ha ha.
Dean: Each one if you look at it, after they get past a certain point, ahhhh, I could do it too!
Helen: Yeah, because…
Dean: “I got the extra life. I could be dead now.”
Greg: That’s right.
Dean: “And it feels good, I enjoy it”. I see this in so many of them. I sit back and I observe and it’s miraculous.
Greg: You’ve probably learned a lot by just by sitting back and observing.
Dean: Probably not as much as I should have, but yes.
Helen: But you don’t have to go through a life experience like this. You don’t have a transplant to feel good everyday, to want to accomplish something, to feel good within yourself. You don’t have to do that. You can do that regardless. You can just think positive and move ahead. You don’t have to have a big medical thing.
Dean: From my point you have to be more positive going into that transplant…
Helen: I was very positive…
Dean: …yeah because, like you said, for one I have no choice. Secondly, they’re going to make sure nothing happens to me. All those are positive signs, right? I never did hear, “I wonder how big a scar I’m going to have”, or “I wonder if that is going to hurt”. I already know I’m hurting but they’ve got a special bed for you. Like is the cup half full or is it half empty. You’re working from the middle to the top, not from the middle down.
Greg: And the people who are working from the middle down don’t make it very well.
Helen: Right.
Dean: And in some cases you can understand approximately why. But it is amazing to watch.
Helen: I guess what happens, the ones that I see, are very positive people because they are all very interested in getting out things. I know some transplants and they do go down hill and they don’t do so well, because they just don’t, I don’t know, just don’t have the energy that they did.
Greg: There’s a number of transplant groups in my area that I went to before I had my transplant a little bit, and I went to a little bit after my transplant. And one thing I discovered was that the people who were at those meetings were so negative. They just talked about their aches and pain, and talked about the negative, and talked about being sick. You know, there wasn’t the positive that I hear about people that talk about the Transplant Games for example. They’re talking about the medals they won and ones they’re gonna win and so forth. I stopped going to the transplant groups because I got tired of listening to people who were just talking themselves into being sick again.
Helen: We all got aches and pains from time to time and got to talk about it, ha ha.
Dean: When she first found this out, she walked around for about six months looking for a support group. Who can you talk to? There was nothing. And I happened to be reading the paper one day and I looked through the letters to the editor, and here’s one from a lady who has PBC, who has been diagnosed, and she is looking for somebody, anybody, that has or knows of somebody with the same condition, to see if they can get together and support. And I gave the paper to Helen. And you contacted Thelma, and you two were the first ones. And the group grew and her experiences and your experiences are all separate and all different. But once you had that, you have somebody that can truly say, “Do you feel this way…?”. You’re not complaining, you’re finding out if they know something that might help you and vice versa. But you have somebody to lean on who knows exactly what you are talking about. (Unintelligible).
Helen: Well that was really good for me at that time. I enjoyed the group when we had it together, but one by one we all got transplanted. So we circled back and gave support to the ones that were waiting. It was really good for us.
Dean: You were with them the night before you were transplanted.
Helen: We had our little support group and we were having this nice supper and we were all talking about Christmas, because it was November 17th on our Christmas get-together. And I said, “All I ask for Christmas is my new liver”, and by golly they called the next afternoon to go in. I was just awestruck, I couldn’t believe it. How long did you have to wait?
Greg: Almost exactly a year…
Dean: A year?
Helen: …by the time I got on the transplant list. I’m a member of Kaiser Permanente. They don’t do the transplant, they contract out to UCLA or the University of Alabama. And so I chose UCLA because that’s where I live and also because they have a great reputation. But it took me quite a while to get on the list. My wife works the 3-11 night shift in Intensive Care, and the funny story is that it was Halloween and I had gone to a little Halloween thing that day. And I came home and I wasn’t feeling all that great. So somehow she knew when I was talking to her on the phone that something was wrong. And by the time she got home, at 1 o’clock in the morning, she walked in I’d had bleeding varicies for the first time, and there was blood all over the walls, and the floor and so forth. And so she took me into the hospital and, all I remember, I was later in a coma, but all I remember after I woke up was all this Halloween stuff everywhere.
Dean: (Boisterous laughter) Ha ha.
Helen: Ha ha.
Greg: Ha, and you’re the first people to think it’s as funny as I do. I usually tell it to people and they just stare at me…
Dean: Ha ha.
Greg: …with the ghosts and goblins on the walls and hanging in the air. And it’s Halloween. It’s burned in my memory, it’s Halloween.
Helen: Ha ha.
Greg: So the Kaiser people, despite all the of this and all the tests I’ve done. I’d been through all the tests like twice, right? And they still kept saying, “Well, we still need another test”. And my wife said to them, “How much do we have to have”…
Helen: Oh God.
Greg: So anyway she stayed on them until they said, “OK take him to UCLA”. So they took me to UCLA and I got on the list, and I stayed there and they asked me all the questions like, “You won’t commit suicide if you have a transplant” and all that stuff you know.
Helen: Ha, yeah, yeah.
Greg: So I got on the list and a year later, guess what?
Dean: Ha.
Greg: I had my transplant and…
Dean: It was Halloween again, ha.
Helen: Ha, ha. You’re just supposed to wake up with the ghosts and goblins. Yeah you look back and things are done at certain times for certain reasons and whatever, we all wait it out.
Greg: My wife and I had fun with it too, if you can call it fun.
Dean: Well you have to make it fun.
Greg: Well she worked in a hospital, right? And so the last thing she wants to do on her day off is go to the hospital.
Helen: Ha, that’s true. That’s right.
Greg: And she’d come home, “Hi, it’s my day off”, and then I’d be throwing up or something and I’d have to go, I couldn’t breathe, and boom I’m off to the hospital. So…
Helen: She had her day off at the hospital.
Greg: And it became a standing joke, she was never out of the hospital. So we started it, instead of Club Med we called it Club Kaiser – “the sharpest needles, the best food, the softest pillows, the nicest nurses”, the whole thing, OK? So it’s off to Club Kaiser again. And then we’d go to some cheap Chinese restaurant to have some food and make a date out of it.
Helen: Make a date out of it, yeah, ha.
Dean: One of the things that sticks in my mind was that, as you progressed your processing in your stomach, when you went to the bathroom everything would just float in the water.
Helen: Oh yeah, nothing…
Greg: You mean pills?
Helen: Well, yes pills too.
Dean: I mean everything.
Helen: Especially lettuce.
Dean: And it used to bother her, when everything would float ha. Ah, jeez.
Helen: Discouraging.
Dean: After the transplant, all of a sudden one day she walked in the room and she said, “It sank!”. Ha ha.
Helen: Ha, I’m telling you, it had been so long since I had been normal that way.
Greg: Well they gave me these pills. They said, “You really need to have these pills, because they’re really gonna help”, right? But I’d take the damn pills and they’d float. The same thing happened to me. And these are the pills that had to stay. So they ended up giving me these awful liquid, so that really fixed me. Right down the toilet.
Helen: Ha.
Dean: The thing is, until you start talking with somebody about these things, and then after, probably tomorrow all of a sudden you think, “You remember when….?” And you start thinking back and remembering some of the other things too.
Greg: One thing I’ve noticed is that some people who are a long way after their transplant, A they just don’t want to talk about it because it brings up such bad memories, or B they’re just feeling so good, and they’ve had this past history, and I notice in myself that I have a tendency to forget a lot of the things and it’s only been a few years for me.
Dean: I don’t think you forget, I think you file them away because you have so many other things going on. You never really totally forget. I agree that some people they don’t want to the family. I don’t think we’re that way, we talk about it.
Helen: I know people who don’t even want to go to the hospital even, you know nothing to do with the hospital. Yet I think, “Aren’t you grateful that you were there and they could take care of you? Don’t you look at it that way?”. “No I just never want to go there again”. Well that’s not very good thinking because I don’t care, you’re going to have go there again. There is no way, just because you got a new liver that means your body is going to be 100% on for the rest of your life. You’re going to have to keep going back there, you’re going to have to keep having things done. But I know some people who are just stuck with that attitude and it’s not good.
Greg: I feel like I’m taking my car into the mechanic. I gotta go in and have it taken a look at, and check under the hood, and check the oil.
Helen: That’s right. And for me, especially since I know I have PBC back again, there is no way that I’m going to mess around and not keep on top of that. I have you. You have to.
Greg: You know what happened last time.
Helen: Well yeah. I lost a friend here a year, year and a half ago, and I think a lot of it was that she didn’t want to go back and get things checked.
Dean: She was a little careless with the way she took her medications too. People are different.
Greg: Are you religious about taking your medications?
Helen: Oh to a point. Somewhere between. When I started I used to take mine at 9 in the morning and 9 at night. Some people take theirs around 8, even earlier. And so I take mine between 9 and 10. And like last night Kathy asked me, “When do you take yours?”, and I said I don’t take mine until 9, after I’ve been to the meeting or whatever. What time do you take yours at?
Greg: They started me out on 8 and I just kept it there because it's a convenient time for me.
Dean: I think the best thing for most people is to pick a time that is convenient.
Helen: Well they started me at 9 and that worked out good for me because I never did go back to work. So 9 o’clock is fine. I don’t think over the 13 and a half years I’ve missed that many times. I could probably count on one hand. I’ve taken them late sometimes or an hour or two later. But as far as missing, I don’t think I’ve missed a lot or ever.
Greg: Early on I’d panic if I missed it…
Helen: Uh yeah, ha…
Greg: and I had a schedule initially where I had to take pills something like 5 times a day. And I actually researched on the Internet and found a watch that had 5 alarms…
Dean: Ha ha
Helen: Ha ha.
Greg: …and an automatic reminder 5 minutes after. Because when you’re on Prograf the alarm goes off, you know your alarm goes and then you forget, right?
Helen: That’s right.
Greg: So I had that automatic reminder 5 minutes later. But I actually had a watch that had that many alarms. But now I only have to take them at 8 and 8. And if I’m late an hour or so… All I know is that I’m not supposed to take the Prograf any closer than 10 hours apart. And so if I goof up and it’s 11 o’clock I won’t take it until 10 hours later.
Helen: That’s kind of what I do too. But again if I don’t get in until 10 or 10:30 at night then the next morning I take them later.
Dean: The only problem we have is when the time changes.
Helen: Uh yeah the time changes.
Dean: Then you gotta have the watch that has a computer and time zone changes.
Helen: I was like you though too.
Dean: You don’t want to have to wake up at 3 in the morning to take your pills right?
Helen: Yeah but now I think that we realize that if we miss it by an hour or two that we just kind of slide the time,
Dean: Well part of it too is that I’ve been around this stuff for a long time, but you have a built-up level in your blood.
Helen: I just try and be very correct and not mess around for the couple days before I got for blood work to make sure that my level is a normal level.
Greg: So your tests are correct.
Helen: Yeah, and now from being this far out from transplant, usually I have a level around 100, between 90 and 100 is what my level should be. But I don’t want to be messing around with that the day before I have my blood work done. It’s kind of silly to do that. [Did you ever experience severe itching?]
Greg: … on occasion I did, and they gave me cans of powder (to take for skin itching). And I think I used it once or twice but I didn’t have to use it much.
Helen: I think you were fortunate, because I know so many, especially ones that had PBC, that particular liver disease. They were suffering. They were just raw with itching. Thank goodness I never had that much. I had a bit of it but not much.
Greg: I had a bit of it too. But when it made me itch it made me feel like a dog that couldn’t stop scratching.
Helen: It’s so miserable. I felt very fortunate that I didn’t have that. And I had a very good appetite, but nothing stayed with me.
Greg: We were talking about being very conscientious about taking our medications at first. Remember germs?
D; (Bursts out laughing).
Helen: Oh gee…. Ha, I wouldn’t get in an elevator. If an elevator stopped and there was more than maybe 3 or 4 people in there I’d wait until the next one comes. Because I just think that elevators are the worst place to catch germs. You get these people coughing and breathing down your neck and all. And so, I just hated getting into elevators.
Dean: Psychological testing are you afraid of catching germs off of doorknobs?
Greg: Off of what?
Dean: Doorknobs. Are you afraid of catching germs off of money.
Helen: Umm hmmm.
Dean: Those were 2 of some of the ones that tend to come up most often. And you don’t even think of doing it.
Helen: I still avoid situations where there are germs there that I don’t want to be in contact with. When I know that my grandchildren are not feeling well, and the kids know it too, they just don’t bring them around. I just avoid certain things for that reason. Once-in-a-while I think about it when I step in an elevator, and if it’s full often I’ll just pass. Like even yesterday, when we all got in that elevator, I thought “Ugh, I got stuck in a tiny elevator again”, ha. That was one thing that really bothered me at first. You too?
Greg: Was there a cleaning ritual where you had to have the house done before you came home from the hospital?
Helen: No.
Greg: Many spouses I know are told to clean the house, and they scrub it down to the last germ.
Helen: No I don’t think he did that. I don’t think there was much cleaning done.
Dean: Well the thing is, PBC is hard on … (unintelligible).
Greg: Well you were asking me how I was at first.
Helen: Yes.
Greg: Well I was really paranoid. The nurses took the fresh flowers out of my room because the fungus would grow in the water. So I was surrounded. I mean, I couldn’t drink the tap water in the hospital. I thought they meant that I couldn’t drink tap water in general, but it’s because the UCLA tap water goes through a really horrid system.
Helen: Oh that’s just great for what you need huh?
Greg: So I thought I couldn’t drink, well you are supposed to be careful if you’re in a strange city or something, but it was to the point that I thought that I had to drink bottled water all the time. Because I’m in the Director’s Guild, and I’m a moviemaker. And starting in about November, so this is just a little bit after I got out of the hospital, right? The industry is gearing up for the Academy Awards and stuff in April, right? So my card allows me, and I’ve got this ritual every year. I just don’t go to movies during the year, except starting in November I can go to any one I want for free.
Helen: Oh movie theaters are good for germs too.
Greg: You got it. So here comes November and I’m thinking, “Do I really want to go see a movie? There’s germs”.
Helen: Ha ha ha.
Greg: And then you walk in and your feet stick to the floor because there’s gum. Germs, right? And you touch something and it’s sticky because some kid has been there…
Dean: Pop. Candy bars.
Greg: And it’s cold season, so people are coughing. It was horrible. I was so scared. And uh, people would sneeze and I’d move. I’d go to a restaurant and I’d order a bunch of extra napkins, you know I’d say, “Can I have some extra napkins?” and I would put my silverware on napkins that I never took off the table so that they never touched…
Helen: The table surface.
Greg: …the table surface. Now…
Helen: Does it bother you now?
Greg: No.
Helen: You know what bothers me still? Is flying on airplanes and there’s people coughing all around you. I’m not that crazy about the air inside of airplanes either, because I think it just goes around and around and around. And if there are people are around me coughing and sneezing when we’re flying somewhere, that bothers me as much… well riding on the bus too. If there is somebody on the bus coughing and hacking. That bothers me probably worse than anything because I know for that many hours I’m stuck in that spot. So how many germs am I going to breathe in, you know? And besides, if I’m going somewhere on the bus or on the plane, I’m on a holiday and I don’t want to get sick, ha.
Greg: But you weren’t as bad as I was?
Helen: No I wasn’t. But I think that probably it’s because I knew more about it. Because I worked in the clinic because I had friends in that area. But it was stressed. And taking plants out of your room, yes they took out remember, no plants and dirt in rooms could not come in. And they said even your plants at home you had to get rid of because of the fungus in that, if you had lots of plants at home. That was mentioned, yes. And they said no plants in the room.
Greg: What about animals? Birds?
Dean: Birds was mentioned. Plants. At that point we never did have pets.
Helen: Prior to your transplant did they really give you a rundown for your dental stuff?
Greg: Well they told me, not so much before my transplant, but certainly after my transplant that when I had my teeth cleaned and I had to go to the dentist, to take some amoxicillin an hour before I left.
Helen: The last few years I’ve been doing that. But before my transplant they had this new program and your teeth just had to be squeaky clean before they ever did anything. So I had to have my wisdom teeth dug out, ha.
Dean: Dental surgery.
Helen: I was so weak, I could hardly get into the dentist’s chair, and then they knocked me out and do this to you. But it all had to be done so that wouldn’t have to have a problem with that afterwards. I thank them now because they’re gone.
Dean: But when you stop and think, you were lucky. You had a dentist who really looked after you. If you’d have had to have dental surgery there was no way he was going to touch it. The words that he said (unintelligible).
Greg: I’m trying to think of what else. The germs. The medications.
Helen: You know why I felt safe going to the Transplant Games? The one in Vancouver was no problem because it was so close to home, we could drive there. And I’m in Canada right? So I wasn’t paranoid about that. A little paranoid about going out of the country. But you know why I was comfortable going to Manchester, and I used this when I went to Australia too. Because when you’re at the World Transplant Games they have their own doctors there. They have their own medical staff. And you feel comfortable because if you have a problem there you can just go and get checked and whatever.
Greg: Anyway when we went to go over to Manchester was I told myself I would feel comfortable going there was we’ll have the transplant team, and if I have any problems I could go to the team doctors. But about 2 months prior to going to the games I was in Calgary on business, and I had an extremely high fever, like 104, just overnight. I said to just get me back there, I don’t want to go to the hospital. Let’s go home to maybe the emergency at Edmonton. And right away they phoned the doctor and they started examining me. Guess what? It was my gallbladder. You know what? I hit the medical books because that was my second gallbladder that I had. I had gallbladder surgery 20 years before and I had my gallbladder removed. Because we were in a new program here, when I had my liver transplant, they did not remove the gallbladder off the new liver. They left it on there. So this was the transplanted gallbladder that was infected. And I was so mad. This was the first time I ever got mad at Dr. K. And he felt bad. And he came over to me, I’d had an ultrasound done. And he knelt down on the floor beside me and he said, “I’m so sorry”. I yelled at him and said, “I had my gallbladder out 20 years ago. Why didn’t you cut the thing off and throw it in the garbage? Why did you leave it on here?” And he was all red and he said, “Well, we don’t do that now you know, we don’t leave the gallbladders attached anymore. We take them off”. And I was just so upset having to have another gallbladder surgery. And I was really sick. I was running a fever…
Dean: And there was no pain…
Helen: I didn’t have any pain down that side. All I had was a little catch but no pain. But when they got in there that thing was gangreneous. Well then my numbers all went out. They upped my Prednisone that I was just blown up like a moon. And the big thing was to get my iron down and under control because I couldn’t go to the Games because you have to have certain blood levels and mine were way over. So I had to get my iron down. But I had this big balloon face and I was header at the longboat in those Games. I was header at the longboat. And they had pictures and said “Who is that?”. They didn’t know me because I was so fat with the Prednisone. But when I was over there they treated me really well and I was really looked after. And I had blood work done. Mind you we had to go to a couple hospitals to get it done. But we did get the blood work done when we were in England, and then they would fax it back to Edmonton, and they changed my doses over there. And it worked out very well. But it was only because I had such good contact with the hospital here that I was able to do that. But my first intention of going to Manchester was that we could go there because they have the doctors and everything, not knowing that I really did need doctors when I was over there. They took very good care of me.
Greg: Well one snag I ran into on this trip is I needed some refills for my prescriptions, right? And so I had told Kaiser that I was going on a trip and asked if I could have extra. Well, no. Then I called them now that I’m here and I say “Send them to me”. Well it will take 10 days.
Helen: And you need them now.
Greg: It’s not just that I need them now, I don’t stay anywhere longer than a couple days. So now what I worked out the last couple days with my wife is that she is going to pick them up, and Dave was kind enough to let me use his address, and I’ll have her second day deliver them, you Fed Ex them or something. You know, you can’t get any extra and then when you’re on the road it takes 10 days.
Dean: They can’t go through a hospital here and then have them issued to you?
Helen: When I tried to find that out before I left, they’d say not to worry about it. But I know I need to worry about it.
Dean: Well if you carry a letter, we did this. You had to have these letters with you, partly when you go through Customs, that you are on these medications, authorized by these doctors, and this hospital, and these dosages. And if you ran short then you took that in to one of the hospitals there and they would confirm that through these doctors and the hospital, and then they could issue it there.
Helen: But here in Alberta there are only 2 hospitals where you can get the drugs. The U of A is one, and the Footbell Hospital in Calgary, and that’s the only two hospitals. Because I know people in southern Alberta, they have to have it mailed back and forth because their hospital there can’t carry it. And it’s probably the same down your way, there’s only certain places you can get those drugs.
Greg: I knew that it would be a snag. But going through the bureaucracy trying to find that out before I left was just impossible.
Helen: I know a friend who traveled across Canada this year and then their plan was to go down to the States, across the States, and back up the West Coast. And she is on Interferon. And she went through so much trouble because had a very difficult time getting a hold of that drug too.
Greg: I know some people also. I became very diabetic right after my transplant. Very diabetic. I had been diabetic for the last number of years but not so bad that I needed to have insulin. But one of the things that we grow on my orchard is oranges, and orange juice is the first thing they give you when you’re low on sugar. And so I get out of my transplant, I’m back to the ranch, and my office looks out onto the orange grove part of the ranch, right?
Dean: Ha ha.
Greg: And November, December is when they start turning orange. Navel oranges start turning orange. And it was “Water water everywhere and not a drop to drink”.
Helen: Ha ha, oh yeah.
Greg: I was used to fresh-squeezed orange juice every day.
Helen: Just out there looking at you.
Greg: But I wondered what people do when they go overseas and they need to take insulin. I know one time my wife and I had gone to UCLA for follow-up after my transplant. And I needed to take insulin and we pulled off at this little beach parking lot kind of in the middle of nowhere but there was still a car around. And you know, we’re there with our drug kit and…
Dean: Ha ha…
Helen: Ha, it’s so brave to do it out in the open.
Greg: But you have to do it somewhere. So that’s why I ask people when you’re traveling, where do you go you know?
Dean: We were on a long holiday, but you had to go into the hospital for your kidney. So we’re sitting in the room, because she was having her blood taken. And all these people were sitting there, right. Ha, and this is why I say you’re an accompanying person but you’re also amongst aliens. And all of a sudden out come all these little kits and all this little stuff…
Helen: That’s right. That’s when we were taking the liquid stuff, huh?
Dean: The whole bunch of them. They’re sitting there, and they’re all sitting they’re…
Helen: We’re all on liquid…
Dean: …and it’s like if you don’t take that…
Helen: We were all on liquid stuff. You had to carry the liquid stuff with you. You had to carry the little syringe with you, you had to carry the little cup to mix it in, and plus a juice or milk or something to mix it. That’s right…
Dean: It was quite funny.
Helen: …at that time everybody had to pull all their stuff out and squeeze it on something.
Greg: It’s almost like tea time.
Helen: That’s right. Thank goodness…
Greg: Oh I remember another thing. With all the meds that I had to take, we all have to go on a routine, right? The first time we went out of town my wife packed 2 suitcases of stuff. Instead of just taking the little bit we needed for the time we were gone, she took every bottle. And not just the medicines, not just the prescription meds, but the vitamin C and all the stuff…
Dean: Ha ha.
Greg: Can you relate to this?
Helen: Oh sure, yeah.
Dean: I had bruises on my shoulder in Manchester…
Helen: From carrying stuff. Well we went to the Games in Australia. We were going to be gone for 6 weeks. Well that’s a long time. I have a carry-on bag full of drugs. There’s nothing else in there but drugs, not even a hairbrush or nothing, but just drugs. We didn’t have any trouble leaving here, but when we got to Australia that time. There’s some from the American team and some from our team on the plane. And they proceeded to go through out suitcases, and they had about 4 different little areas for us to go through you know. And about the same time we’re all opening up our bags. And oh there’s this one guy and he’s got lots of drugs, and I have lots of drugs. And luckily I had this letter from my doctor, and I’m saying, “I’m with the transplant, we’re all together”. And these poor security guys couldn’t believe it. We’re all carrying suitcases full of these drugs. We’ve all got our prescription lists with us and everything and so they just didn’t question us any more. The said to just close it up and go. Because there were several of us with just bags of drugs. But you feel kind of guilty because here you are carrying all of this. Because I take everything with me. You know, I make sure that I have a bottle with that prescription on it. And then I wait until you get where you’re going and sometimes I take them and put them into plastic bags. But when I’m traveling initially I leave them in the bottle with the prescription on it in case I get questioned about it.
Greg: And you want to have them somewhere where you know where they are. You don’t want them out of your sight.
Helen: Well that’s why I take them in my carry-on. Everyone else takes stuff like a change a clothes, and maybe the camera, and a brush and a comb. I carry my drugs in my bag, ha. My first priority is to get my drugs there.
Helen: Something I wanted to tell you . Since I’ve had my transplant I’ve developed a severe allergy to milk products and to egg yolk, and we believe it’s from the Cyclosporin. For some reason the protein’s changed, the various proteins, and anything that is high in protein I’m allergic to. And I get really really ill. It started several years ago and we thought it was lactose intolerance but I took lactose intolerance pills and I could have milk stuff. And it would be OK but then it got worse and worse. And then I was tested by an allergy doctor and all this other information came up. So I’m extremely allergic to protein parts, like skim milk is really bad. If I have skim milk now, in 20 minutes I would start itching. And if I had an egg yolk, in 20 minutes to a half an hour, I get this pain in my chest and I have to throw up. And even 8 hours afterwards I’m still scratching. I usually spend the rest of the day in the bath tub. So I really have to watch. I can get away using margarine. No cheeses, no milk, nothing like that. And I must say over the last few years the community has become more allergy aware, the restaurants are more allergy aware than they were even 5 years ago. Because now I can go in there and I say I have this allergy, and I really stress the fact that I’m going to be even if I’m contact with any of it, which is not a lie, and they are very good. Like I don’t get much hassle about requesting certain things in a restaurant. But the doctors believe it is something to do with the Cyclosporin. And I don’t want to change the drug, because I’m actually doing OK on this. I just try to not be in contact with any of that. But it means watching what I eat. It’s a serious problem and I have to be very very careful.
Greg: Do you know other people who have this?
Helen: I know 2 other people. There was this person in Grand Prairie, uh not Grand Prairie, Fort St. John, she was having trouble with eggs too. And another fellow who I’ve lost contact with. He’s the guy who asked me, “When are you going to feel back to normal again”. And it’s funny, he was fine and the minute he would go in and have his blood work done, he had to have it done every 2 weeks for something. After he had his blood work don first thing in the morning, he’d treat himself to eggs, and bacon, and toast at the hospital cafeteria because it was faster to go in there. And then by the time he got home he wasn’t feeling so good, you know. And he realized that it was the eggs that was doing it. And uh then I had realized then too that eggs were bothering me too. So there was 3 of us that were having trouble with eggs at the time. I mentioned it to the doctors. The doctors know that I have it. And they really would like to do a survey on it, but none of them have got the time to do it, to find out if there are others that have had trouble with that. Actually I had this talk with the allergy doctor too. I have to make sure my meat is cooked properly because of the protein in meat too. I haven’t had any trouble with meat. But it’s pretty scary because the liver (unintelligible). So a couple years ago at Christmastime I was offered a Hershey chocolate, a little tiny Hershey thing. And I was working, I was at the volunteer center or something. And I took one and man I was sick all morning, just from one little tiny chocolate. So I just have to watch it. And I really don’t need all that cholesterol and all that stuff anyway. But that’s another reason why I’m on treatment for parametry (sp) too because I’m not getting much calcium other than what I get from vegetables. I can’t have any milk, I can’t have any cheese.
Greg: One thing that I found about Prograf was that I thought I was hallucinating. In the hospital I actually started hallucinating and that’s what sent me into some grand mal seizures. That’s one reason why I had to stay a month instead of 10 days. But, now I don’t know if it was because of that Prograf at that time that sent me into the grand mal seizures, the doctors said it’s not that uncommon. However I started noticing after I came home that I’d see things. You know, I’d hear voices and…
Helen: It’s that Halloween thing ha.
Greg: Yeah the Halloween thing, it’s the 60’s flashing back. And I saw things out of the corner of my eye or when it was getting dark I thought I’d see things. That’s one reason why I was afraid of driving at night. During the day it wasn’t so bad but at night I saw afraid that I’d think I saw something and swerve the car or something. And it scared me to death. So I mentioned it to someone, my friends who’d had transplants too. I said, “Do you ever see things?”. And one of them who had a transplant years before I did, he was kind of my mentor you know. He stopped and he said, “You know, now that you mention it… Let me give you an example. I was washing the dishes one day standing at the sink. And out of the corner of my eye I saw my cat run across the room and I felt it run over my feet while I was standing at the counter, and disappeared out of the room”. And he went, “Damn!” And then he thought for a second and realized that the cat was locked up in the garage.
Helen: Ha, oh no.
Greg: And the more he started thinking about it he said, “I remember a time in the bedroom and I was asleep, and it was dark. And we had clothes hanging on a clothes rack and the clothes at night against the window looked like the outline of a person. And I woke up and I took my pillow and I threw it at it, and my wife wondered what was wrong with me”. Anyway, he all these stories like this and he had never realized, he never put the 2 and 2 together, because this isn’t something you talk about.
Helen: No they all scare you off.
Greg: So I went to my transplant coordinator when I was still going to UCLA and I said, “You know. I’m seeing things. I’m talking to people who are seeing things, what’s the deal?”. And she said, “Oh didn’t you know?”. “No, what?”. And this is about the time I found out from her that I wasn’t supposed to eat grapefruit either…
Helen: Yeah, it comes out after.
Greg: And she says that the Prograf comes from a mushroom that grows on the side of a volcano. And it depends on who you talk to, it’s volcanoes in Indonesia or Japan, but it’s a hallucinogenic mushroom.
Helen: It’s like a magic mushroom.
Greg: Like the kind you used to pay a lot of money for back in the 60’s.
Helen: That’s fascinating, yeah.
Greg: All she actually said was that it was a mushroom, but the between-the-lines was that it’s an hallucinogenic kind of thing. But they don’t tell you a lot about that.
Helen: So are you still having trouble with that?
Greg: No I don’t um….
Helen: Or do you just sort of get used to it, ha.
Greg: Ha. No I don’t seem to have it that much, or perhaps I do just filter it out or something. But whatever it is doesn’t bother me any more. But what I do notice, and other people talk about, is especially at first I talked a lot. The Prograf made me real talky. And I think the Prednisone does that too.
Helen: Prednisone does that.
Greg: Also when I feel under stress I feel much more edgy. It’s harder to calm down.
Helen: Prednisone does that too. The Prednisone, I hope I never have to go back on that drug. It’s a wonderful drug because it helps a lot of people, and it helped me out. It was great. But I did not like the way I felt. I didn’t drive much when I was on it. Because I didn’t feel like I had control. And I just felt like I didn’t have control of the situation. My husband, it took a long time after, much after, for him to realize how difficult it was for me to make decisions. I had trouble before my transplant making decisions because my brain was just not working. I had trouble with numbers. I couldn’t write checks, the number thing. But also the decision-making was not there. Then after the transplant it was the Prednisone that was doing that. And just felt jittery inside. I never felt completely relaxed.
Greg: I still feel that way kind of.
Helen: The Prograf might be it. I don’t think, my Cyclosporin is down so low now. I know other people who have lower doses than me, but then they’re also on Immuran. So I’m just on the one thing. I just felt so much better when I got off the Prednisone.
Greg: Did you have trouble sleeping?
Helen: Not too bad. I’m having trouble sleeping now because I’m going through a hormonal thing that, they had me on HRT, which is a Hormonal Replacement program. Because I’m taking it but then they took me off the whole thing last November. Since then I’ve been having hot flashes and not sleeping at night, a whole problem with that. But that’s another thing itself, dealing with the drugs. But the hallucinations, I had that in the hospital when I was on morphine.
Greg: That’s something isn’t it?
Helen: Oh dear, some nights yeah. It was bad, very bad.
Greg: The night I had the grand mal seizure it had been building up maybe over a day or 2. And the nurses would come in and they had their in cornrows or real curly. They were black so they had their hair really cured up, you know. And I was seeing colors in the hair, and they were moving around a little bit. And I knew I was just hallucinating and it didn’t bother me that much. I figured I was on a high dose of medication, you know. And I would go to the bathroom, and this was just right after my transplant, and I’d walk to the bathroom. And whatever I had happened to be hearing on television or whatever, if was sports or if it was news or whatever, I would hear it coming out of the vents in the bathroom, right/
Helen: Ha ha.
Greg: I would be in the bathroom, and in my heart of hearts I knew that I wasn’t hearing it. But I still caught myself leaning over, because there were these vents all along the floor, and trying to hear if I really did hear clear words. And the harder I tried I could never hear a clear word, it was just that general sound you know. So I got in the habit of staying up late because I didn’t like waking up in the middle of the night and not being able to get back to sleep. I hated that. So I’d stay late so that I could sleep until the morning. So I was staying up late and watching some movie, and then literally the next thing I know I’m laying on my back there are all these faces staring at me like just in a movie when it fades up and you’re coming out of a coma. And they’re all looking at me and they said, “Do you know where you are?”. “Uh, yeah. In the hospital?”. “Do you know what happened?”. “Umm, no?”. “You just had 2 grand mal seizures.” And I looked around and I’m all wrapped up with blankets and pillows stuffed all around me. And there were just people ringed around the bed looking at me. And I had mentioned to the neurologist, he was an Asian guy and I couldn’t understand what he was saying very well. And he was very serious. And I told him that I’d been hallucinating and I’d been hearing things. And there was a painting on the wall at the foot of my bed, and I said that I was seeing faces in that. And he looked at me said deadly seriously, “Did you recognize who it was?”. And I said, “No, I didn’t recognize who it was. I was just hallucinating.”. And he had this thing about it, he kept going back to it, “Well did you recognize any of the faces?”. And no I didn’t recognize any of the faces, I’m not crazy, I was just hallucinating. I don’t need a shrink.
Helen: Yeah, take me off the drugs and I’ll be fine.
Greg: Yeah.
Helen: Oh that’s an awful feeling when you lost control like that.
Greg: What the whole experience made me realize was that, that was the first time I’d ever had the experience of all of a sudden the next thing I know is that hours have gone by and there’s people saying, “Do you know what happened to you?” I thought, “I could have died”. Just like that (snaps fingers) I could have died.
Helen: And that’s how quick it will be too, you know, ha.
Greg: And that painless hopefully.
Helen: Ha, yeah.
Greg: And the next thing you know it’s St. Peter at the Pearly Gates. That’s one thing about this whole experience is that I’m not afraid of dying. I’ve made my peace.
Helen: I’m not either. I remember going into surgery that day and saying to, I was on the stretcher and I knew I was going through the doors into the OR. And I said, “Lord”, I said, “Boy you’ve got me this far, the rest is up to you. I’m here for a certain reason, and whatever it is do what you have to do”. What are you going to do?
Greg: That’s the way I felt.
Helen: And you know, I never thought, “Why, aren’t you afraid to have a transplant. Aren’t you afraid to have somebody else’s body inside you, or pieces of somebody inside?”. No. If that’s the way it’s going to be it’s the way it’s going to be.. And this has happened for a reason and who am I to say. I just hold on for the ride and do what I can do, and the rest is not up to me. And then a friend of mine, who had a heart transplant, one day he was down in the hospital after his heart transplant to have some tests done or something, and one of the orderlies took him to the elevator. And when he got him in the elevator by himself he says, ”How does it feel to having the part of another person’s body in you? Don’t you feel awkward having somebody’s else’s heart inside of you?” And Howard said, “No, it was a gift that was given to me. And when somebody gives you a give you accept it and you don’t question it”. And the guy was quite taken back, and the elevator doors opened and they were there. I said after that, “That was a really good thing for you to say to him”. I said, “He was saying that to get you upset, to get you to upset, to get you bothered or get you thinking on another line or something”. And I said, “That was really an awful thing for him to ask you”. And he said, “That’s why I told him, ‘It’s a gift’”.
Q; I remember the first time that after my transplant, at some point they took me into the ultrasound room to check out my liver. And I remember looking at the screen, it didn’t bother me, but it was just so weird, “I’m looking at somebody else’s liver inside me. And it didn’t bother me, it was just a known fact. But I do remember mentioning something like that, about somebody else’s liver being inside of me. And the ultrasound person said it me, “It’s yours now”.
Helen: Right, it is yours now.
Greg: I also had that same feeling that, “Whatever is going to be is going to be”. You know, I’m just in God’s hands. And I felt like everything is for a purpose. My being here now is for a purpose. My having a transplant, my being alive is for a purpose. And I spent a long time after my transplant saying, “Well OK what is the purpose then?”.
Helen: I know, and then a lot of people don’t question that for a long time. But I never what I’m here for, I just. I’m here, I look back and I think maybe I had to deal with certain things afterwards, I had to take care of certain things that happened to me since. I don’t know. My children needed me, that’s one reason I was here. But that’s what I felt like too, I appreciate every day. And whatever will be will be. “You’ve gotten me to this point, get me through the next day, and let it be at that”.
Greg: Another thing that I remember, as I was pushed through the doors so to speak, was that my wife followed me down, next to me on the gurney. And they parked us in the hall a little bit. And I can’t see without my glasses. And the last thing to go. The last thing I do before I go to sleep, right, you can relate to this?
Helen: Yeah.
Greg: And it was time to go, and the last thing I did was I gave her my glasses, and I knew that was it. And then they wheeled me in, and they gave me my shot, and the next thing I knew I was out.
Helen: Yes I know. I was just grateful there was such a thing. For 3 years I didn’t think I was going to be any hope for me.
Greg: It still seems like a miracle to me, but back then when hardly anybody, nobody in the province was getting them. It must just have been an incredible gift from the sky.
Helen: Right exactly. And I kept wondering where are they going to get the organs from? Like who is going to sign the cards, who is that going to be? There were so few people signing cards then. The fellow that I was having my assessment done with, he got his on October 7th. And he was the first one done, and that was encouraging to me. And they kept saying, “Hold on. Yours will be soon, yours will be soon.” But I waited until November 18th, I had quite a bit longer.
Greg: Yet in terms of time, people today can wait 3 years.
Helen: I know, and it’s getting longer and longer. And kidney patients have dialysis. We livers start going down we don’t have anything. If you go into liver failure that is it. But I’ve learned so much.
Greg: And you learn so much about human nature too. Like I mentioned yesterday, that man who received a part of a liver from someone he’d never met before.
Helen: I’ll tell you, we were in Australia. There was 2 men, and one man raced against his own heart.
Greg: One man raced against his own heart?
Helen: Yeah. Let me get this straight because you’re recording it and I want to do it right. One needed a lung transplant. One needed a heart transplant. And both of these guys were gray-haired, so I’d say they were in there 50’s or 60’s. And they were in the transplant program together, having their assessments done, and both were waiting for a transplant. And so they knew each other. And then they both got called in. In order to do a lung transplant, it’s easier to get a lung transplant if you take the heart and the lung out. Get the heart and lung out and transplant the new lung in. So what happened was, they had a donor, they took out this fellow’s lung and heart, put in the new lung and heart, and put his heart in the other guy. And so the second guy was racing against his own lung and heart. I mean in a race, and they announced that this guy was running against his own heart because the other fellow had his heart. And that guy had a new lung and heart.
Greg: Who won? It doesn’t matter.
Helen: It doesn’t matter. So out there there’s the 2 gray-haired men running side by side. And, you know, they’re there because 1 person, 1 person gave the gift, and there’s 2 people benefiting from that. And that was really interesting because these weren’t young people either. These are people that are on in age, and they are doing fine. I thought that was a wonderful thing.
Greg: And running. That reminds me a little about that story last night, about 2 people from both sides of Canada who figured out that they had an organ from the same person, and they ended up in the same place.
Helen: I don’t remember.
Greg: It was last night (at the transplant group meeting), somebody was telling the story. And it was either a meeting or the Transplant Games, or something like that. It might have been in Ontario. Anyway, the way I remember it was these 2 people, who had never met before, ended up at the same meeting or conference. Both of them had transplants, one had a heart and one had a kidney, something like that. They lived on opposite sides of the continent. And as they talked, each of them kind of knew where the donor had come from a little bit, and they also knew that there had only been one person in that area that had died at that time. And so they realized that out of the entire country their organs had found to each other, sitting next to each other.
Helen: And that happens for a reason, right? I know of a lady who lost her son, he was in his 20’s, and oh had a terrible accident. He was going the LRT, there’s a whole bunch of stairs going up to the LRT thing. And they were just fooling around, they were going to some kind of a ban concert. And he was sitting on the cement railing thing and got off balance and went down, and hit his head and died. And he wanted to donate his organs. And she became a member of our speaker’s bureau, to talk on that side of it. It’s wonderful to have get people from a donor’s family and the recipient. Anyway, she went to the speaker’s bureau.
Helen: So she went to this speaker’s bureau meeting to speak on her son’s behalf, and at that meeting was a man who had just received a kidney and become a member of the speaker’s bureau. They’re around the table introducing each other. And she introduced the fact that she was the mum of a donor and gave the date and that sort of thing. And since she gave the date he kind of clued in. And he gave the date of his transplant. And she thought, “I wonder?”. And so they let it go like that and before the end of the evening she’d had enough. She had to ask them, and sure enough it was her son’s kidney that he received. Nobody wanting to let them know that. Like it was not a planned thing, they were not supposed to be able to find that out. But just at that meeting, the person is him. And this is the thing that I’m not too sure of with finding out who your donor family is. This worked out very well, but I think over time it might put stress on him. Because she wanted him to come to the memorial that they had for her son. And he went. And he’s not obligated to do anything, which she asked him to do. And that’s fine, I haven’t seen them for quite some time now. But I don’t know about getting to know your donor. Some situations I think it’s good, some situations I think it is really really bad.
Greg: Thank you very much. I should probably let your voice rest.

The program was so new that we wore T-shirts. We had them for get-togethers, T-shirts with “Number 1” and “Number 2”.