Lori S. Interview

Lori is the wife of kidney-recipient Dave. Their whole family rallied to help Dave receive his new kidney from his brother, Barry. Lori discusses some of the difficult issues that many spouses encounter both before and after transplant.

Greg: How long did you know each other or how long were you and Dave married before he got sick?
Lori: I met Dave when I was 15.
Greg: How long were you married when he got sick?
Lori: Uh we were married in uh, now you’ve got me in the hot seat, ha. (Lori calculates) Five years.
Greg: You were married five years?
Lori: I think so, yeah.
Greg: Did you notice anything different, or was it the lab values, or did he complain, or did he experience things…
Lori: He started having headaches, which are totally uncommon for him. He never got headaches. And when they wouldn’t go away with Tylenol or Advil or whatever then he started to get worried. So then he went to the doctors thinking they were going to give him something for headaches. Then the blood work came in and it wasn’t long, it was like a week, and all hell broke loose, so to say.
Greg: What happened?
Lori: Emotionally?
Greg: Well when you say “All hell broke loose”…
Lori: All of a sudden, it was very quickly diagnosed. You know with the blood work of course his creatinin was up, the potassium was up, blood pressure was sky-high. His first, from what I experienced, his first concern of course was his kids. When they narrowed it down and said “You have a kidney disease. We’re not sure what it is yet until we do a biopsy” he was really delusionary. So I mean that was very stressful. What Dave was diagnosed with isn’t genetic, it just happens. There’s no link to genetics at all. But with that in mind we still are concerned about the kids. A little more so when he was on dialysis and my daughter had a bladder infection, so then they ran more tests to make sure it was a bladder, yeah, they just wanted to make sure.
Greg: Did all hell break loose for you too emotionally?
Lori: Emotionally it was hard, because you got to be the tough guy, right? You know, especially with kids you gotta put on your strong mum face, haha.
Greg: That’s one thing I realized with my wife too, was that I was the sick one so she didn’t want to burden me, and now on top of it you add children, so like you said you needed to have that strong mom face. Can you talk about that?
Lori: It just comes. You know it’s not something that you can learn or be taught. It just comes naturally. You don’t want them to worry so you just do what you have to do.
Greg: Who could you talk to?
Lori: My sister.
Greg: Did you talk to Barry’s wife at all?
Lori: Sometimes, but my biggest shoulders were my sister. After… (starts tearing up)… now I’m going to get all emotional. (Long pause). What Barry did you can’t explain…
Greg: And Barry seems so nonchalant about it.
Lori: That and he’d do it again if he could. It’s just amazing.
Greg: Do you think he went through more than he talks about.
Lori: Yeah. Well that’s a tough decision, because it doesn’t just affect him, but his brother’s family. So yeah, it’s a tough decision. It couldn’t be easy. But apparently it was, because there was never a second, I mean from what he’s told me at his place, that he never questioned it. He wanted to be the perfect match out of five and he was, or four.
Greg: He says that he knew it right from the beginning before even the tests were done, he said, “I knew I was the perfect match”.
Lori: Yup.
Greg: He tell you that too?
Lori: Yup.
Greg: What does he tell you then?
Lori: It was just nonchalantly like that, “I’m there”.
Greg: Did he tell you why he thought that?
Lori: They’ve always been very close. It’s just a bond. And it made sense.
Greg: He mentioned to me that they had the same mannerisms…
Lori: Oh, they’re…
Greg: …the same love of cars and motorcycles and this and that. And his logic kind of was “Well, we’re that close and similar in all those ways that we must be a perfect match genetically too.
Lori: Yup, they are. They are two peas in a pod, you know, 10 years apart. Which is amazing.
Greg: What kind of changes did you notice in Dave since his transplant?
Lori: He’s more, I mean he’s always outgoing. But he’s more involved now with, I guess, other people rather than just him. More involved in the community. He’s more involved in his kids’ life. It was a big reality check, you know, what’s important to you. And we all need that. Sometimes you tend to forget.
Greg: How did it affect you that way, the reality check?
Lori: That’s a good question. I have always put my kids number one. Always. And has never changed. That was actually, when Dave got sick, I still had to keep them number one. And you could call, I mean you know some people consider that selfish. You know because Dave was, he was ill and you know, but he has so many other sources to draw from when it came to family, when it came to you know but they had to be number one.
But in life’s perspective it took everything that I thought was important and reorganized them. You know, like money? Everybody’s in debt. I hated to be in debt. And I would do anything not to be in debt. But you know what? It really doesn’t matter. Little things like that. If you can take 10 minutes to spend with your spouse or with your kids, do it. Because you may never have that 10 minutes again. So that was tough.
Greg: Tough or enlightening?
Lori: Oh it wasn’t tough, I think enlightening is a better way of saying it. It was hard to accept that Dave was sick. But uh, because Dave was Dave. He was just everybody’s, you know he was always the center of attention for good things. And it turned around. He was always the center of attention but not so good when he was sick.
Greg: You mean that in the past he was the center of attention for positive things and then he was the center of attention because he was sick.
Lori: Yes, and that’s hard to see, and he wouldn’t accept it.
Greg: What did he do?
Lori: He prolonged, he did everything in his power to keep his kidney. From vitamins, to herbal remedies, to acupuncture, to you know, he wasn’t giving in. Yeah it finally got him but the doctors, when he had his biopsy, said “I give him 3 to 6 months”, and he lasted a year and a half. That’s impressive.
Greg: One time when we were talking you mentioned his forgetfulness since his transplant.
Lori: Oh yeah,
Greg: So he forgets where he puts the keys?
Lori: Not so much material things, it’s more conversation. You know, like and I don’t want to sound like the nagging wife, but I’ll say, “Don’t forget to do this” and I come back and it’s not done. And he used to do it. And now he gets frustrated with me because I don’t even ask any more. I just do it myself, because it’s frustrating. But you just deal with it. When he was first on, like when he first had his transplant and his meds were jumping all over the place, and he was trying I believe it was Cyclosporine, he was a mess. And then when put him to Prograf it turned things around a lot.
Greg: In what way?
Lori: Just all the side-effects. He was tired. He was, his gums were bleeding. It didn’t matter what he did, he was bloated. He was just a mess.
Greg: Did it make him moody or argumentative?
Lori: Moody yes. You kind of had to walk around on eggs. Depending upon how his day was going you either avoided him at all costs or you could sit down and have a conversation with him. He was really good around the kids though, you know, he knew. Once-in-a-while I’d have to shoot him a look like uh you know ha. But he knew. And he found that frustrating. He’d probably argue that point with me today, but you could just tell.
Greg: That he knew he was over the line at times you mean?
Lori: Yeah. It was tough with the kids, especially Steph because she always wanted to know what was going on, any why, and stuff like that. Christopher was older, not that much older, but he kinda understand when I would say something, like “Don’t worry about it, dad’s just had a bad day”. Whereas Steph and Nicholas, he’s younger too, so they didn’t understand.
Greg: I found that the meds made me that way too, and what was frustrating to me was that I’d snap at somebody, usually my wife…
Lori: Uh huh…
Greg: …and the instant I did it I’d go “Arrrrgg, I can’t believe it,” and I’d swear not to do it, right? And two seconds later I’d do the same thing.
Lori: Yeah, yeah. But now he’s fine, you know, almost too good ha.
Greg: You’re waiting for the other shoe to drop?
Lori: Ha ha, well you know, the bottom line is that you never know, right? And that is something like I’m always living in for today. And but I guess in particular with my kids I also have to look at “What could happen?”, which is very difficult. Because I’m a control person. I like to know what is going to happen, when it’s going to happen, and why it’s going to happen. And I have no control. I find that frustrating.
Greg: Now you went through it, are you able to be less that way, like the priority thing we talked about?
Lori: Priority thing? Yeah. I mean it’s changed. You know like when Dave wants to do something, it’s like “Go do it”. Whereas before it was like, How can we afford to do it?”, “Do we really need it?”, you know. You always question it. Now I don’t ever question it. If he wants to do something there’s usually a good reason for it. And it’s not selfish. So he wants to help other people. He wants to get the awareness out. He just wants to do everything and, you know, you tell him “No”, ha ha.
Greg: Why do you think it’s so important to him to get the word out?
Lori: I think a lot of it is because we didn’t know anything It was never a conversation, you know, organ donation. You talked to him about it. It’s not, you know, a coffee room topic. So you’ll be happier and healthier and, it’s like the little irony, you’ll be on meds for the rest of your life. It’s pretty much the bottom line, is what they’re telling you, you know. But that’s not it.
Greg: What is it?
Lori: The gift that you can give back to the rest of the world. And that gift could be absolutely anything. A smile, you know. Or talking, or you know, it doesn’t matter. The people that you meet are incredible. And more and more people need to do that. Kids that are getting transplants, the strength that they have, it’s amazing.
Greg: I hope that people see the kinds of things that Dave is doing and the kinds of things that I am doing, which are different but come from the same place…
Lori: Mmm hmm.
Greg: …and inspire them to become donors. You know, if I donate my organs it’s not a waste, it’s a real gift.
Lori: Well you are enabling somebody else to continue on with their life, you know, and you can. That’s the thing, that you can do.
Greg: Have you found that people you’ve met who have had transplants have changed in ways that Dave has too?
Lori: Oh yeah. All of it’s pretty positive. Most of the people that I have met are actually, not so many. I mean I have met all of the people from the CTA, you know, from the Alberta region and stuff like that. But I’ve met a lot of the doctors, the nurses, the drug techs, and they’re all on the same page as everybody else. When you look at the whole realm of what everybody’s trying to do it’s pretty much all the same. It’s in different directions but organ donation, heck yeah, it’s the thing to do.
Greg: When you said that there is a lot of information out there but it’s all medical, what were you looking for that you couldn’t find?
Lori: Somebody tell me what was going to happen.
Greg: The doctor didn’t tell you what was going to happen?
Lori: (Laughs) Um, no.
Greg: Why?
Lori: Well, because they hadn’t been through it, right? The doctor can tell you the physical aspects of it all. Your scar is going to be this big, we’re going to have so many staples in there, and you know these are the meds we’re going to try you on. If they don’t work… I mean that’s all medical. The emotional nobody can tell you.
Greg: So now you have a chance to tell somebody. What would you tell them?
Lori: Hang in there. It’s tough (tears). Um….
Greg: Do you want a Kleenex?
Lori: No… Don’t quit fighting. It’s worth everything……
Greg: If somebody had just told you that when you were looking for somebody tell you what was going to happen, and somebody just said “You hang in there”, is there more to it than that?
Lori: I mean
Greg: So was my wife.
Lori: And that’s scary.
Greg: Why didn’t you?
Lori: Because I loved him. Love him (sob), not past tense, ha. And because of the kids. And because it wasn’t worth losing everything. That’s why. It would have been the easy road. It’s not a road, I mean, I didn’t choose, but…
Greg: Out of all of it do you think that was the hardest part for you? To stay?
Lori: Yes. Because yeah, it would have been way easier emotionally, on one hand, ha, you know, not to have to deal with it. It’s something I could never have lived with myself if I had done it. It’s like juggling, you just can’t let the balls fall, ha, you know (sniff).
Greg: And then after all that I think with the medications it’s like the bad icing on the cake.
Lori: Well, I mean it only lasts for a little while, right? I mean that’s the good thing of it. Once everything was figured out and straightened out and they found the right meds, I mean he’s back to Dave. Because when he was sick he wasn’t Dave. You know he was in bed a lot. He was drained, physically, and that’s not Dave. So I mean Dave’s back, you know, and has been.
Greg: I think for my wife too, that one of the hardest parts, I mean I know that after I’d gone on the medications, and I was not the same person for a while, that she really wondered who she married. And it wasn’t until somebody, I was on the phone with somebody, with a transplant friend of mine. And he got on the phone with her and his wife got on the phone with her and talked to her, and explained that this was pretty normal. This wasn’t like I’d suddenly become somebody that I wasn’t that she married. And if you can, would you talk about that a little bit. If you were talking to somebody that let them know that this is something that happens. Maybe give an example?
Lori: I’m trying to think…. A little girl in Stephanie’s class was diagnosed with the same disease that Dave has. And they put her on, I talked to her mom because her mom didn’t know what to do. And she and I talked a lot. But, and I’m not trying to bluff off the question, but I think everybody has their own, I guess, questions. You know, I honestly don’t remember what I talked to my sister about. I know we talked a lot, but it was just how we do as sisters. I haven’t had the opportunity to talk to talk to other spouses.
Greg: If you could, what would you say? You are talking to another spouse right now.
Lori: Yeah, ha. But I didn’t. I am now, but I didn’t. And this is the first year that I finally have. And that’s ridiculous. Because if, you know, if you’re not happy it’s really tough to make everybody else happy.
Greg: Thank you for this. Is there anything else that you’d like to say?
Lori: No, I’m done.
Greg: You said a lot…
Lori: Yeah?
Greg: So much. Thanks.