Adelle/Joe Ward Interview

Adelle was ill for quite some time before her support group, not her physician, encouraged her to have a liver transplant. Now she is able to enjoy her family and chase her grandchildren along the beach.

Q: What was it like when you first found out Adelle needed a transplant.
Joe: Before we found out she needed a transplant we were informed that she was dying. And it took a while for that to sink in, they didn’t actually use the “D” word. And I guess maybe a couple years before she had her transplant it really sunk in and I was devastated.
Adelle: Well the doctor actually didn’t say that I could have a transplant. He said that I was not a candidate, um that basically that I should get my affairs in order and we should go and get a plot and wait for the time to come. It wasn’t until we met some people in our support group that we found out through the newspaper that there was even a transplant available, the idea didn’t come from our doctor it came from our support group. And in fact I was not a bit interested I was so sick. I just wanted to go, I was ready to die. I had given up and Joe wasn’t ready to let me go that’s for sure.
Joe: We had no idea. We heard about liver transplants, we knew so little about it. And from what I recall you had about a 30% chance, that’s where it was at one time. But then we saw an article in the newspaper about people who had transplants and called and found where a support group was and I showed up there, and wow the enthusiasm of everyone there and the help. And they helped us within a very short time find another doctor and we to make a long story short about five months after getting involved with the group she had a new liver.
Adelle: They got me the transplant list right away. As soon as I got to UCLA Dr. Goldstein took one look at me and said, “You need a transplant”, and it went very smoothly from then. I’ll never forget the moment we got the call. It was like I can’t believe this you know. All the way down the drive to the hospital we were so quiet, we were so peaceful. I remember saying to Joe you know it’s like if it had been our last drive, it might have been our last few minutes together and what is it you say to each other in that moment when you know this could be the end of everything. Because my chance of survival was you know, if I didn’t get the transplant I wouldn’t survive. And I looked at him and I said, “Honey I’m very at peace. It’s a win-win situation if I don’t make it I’m in Jesus’ arms. If I do make it I’m back in your arms. And so I was very very peaceful when it came time for me to actually go in for the transplant.
Joe: I was very optimistic. Everything was going to go smoothly I knew that.
Adelle: He didn’t call anybody. He didn’t call any of our friends or anything. He spent the entire time in the waiting room all by himself. He just was very confident. He didn’t really feel like he needed any support or anything. And it was kind of like afterwards he called everybody and said, “Hey guess what? Adelle’s going to live”. And um I remember when I woke up in ICU I felt like a different person, and from that moment on I have never had a minute of depression. I have never really been sick again. I have been on a high for life. And I called him in ICU, he had finally tried to get some sleep after being awake for…
Joe: They assured me I could sleep to noon before she would be out of the operation.
Adelle: …hours and hours and I woke up and I said, “I’ve gotta call Joe. I’ve gotta call Joe”. And I got him on the phone and, “Hello” (sounding groggy). “Hi, I’m alive!”. And I think I’ve been doing that to him ever since.
Joe: Oh yes.
Q: What were you thinking when she was on the gurney ready to be wheeled into the operating room?
Joe: I just was very confident that everything will go well. And uh God didn’t bring us this far along to have any tragedy occur. And so I was fully confident that she would be fine, and sure enough her transplant went like clockwork. Uh six hours and they were done, like a textbook case.
Q: What was it like after the transplant?
Adelle: It was wonderful, I was home in ten days. The day I came home from the hospital I walked up the stairs to my bedroom. They said I wouldn’t be able to do that.
Joe: They weren’t very happy about you…
Adelle: They weren’t real happy…
Joe: … without help from anyone.
Adelle: But I mean I’ve really been sailing basically every since. When you have been really really sick and you have been dying there is nothing better than living. I am so thrilled to have had all these snatches of moments of time with my family that I never would have been able to have before. The things that we have done in the last few years I couldn’t do before. And I am so excited because I have three wonderful grandchildren that I have been able to invest time and love and nurturing and energy into. I think they’ll have memories of their grandmother that they’ll always have now. Not a memory of a grandmother in a sickbed. They’ll have a memory of a grandmother running with them in the ocean.
Joe: Well just about two months ago she was having pictures taken and good old grandma here she takes her shoes off and the next thing you know she has the kids in the ocean, the waves are coming in. The kids were upset at you.
Adelle: Yeah, they were. They had the kids all dressed up and grandma got them all wet. That’s OK. We’ve taken lots of trips, we travel. We do things now that I never thought I’d ever do.
Q: One thing that struck me earlier about what you said about the lack of information that was available to you.
Joe: Well prior to finding out about the support group we were desperate. I was desperate. And we, for example, took her to an alternative doctor, although he never guaranteed he could cure her, he never said that, but tried to make her more comfortable.
Adelle: We spent thousands of dollars…
Joe: Oh boy!
Adelle: … in alternative medicine.
J; Yeah, and he was saying you don’t want a transplant. He made it sound like it was really a bad thing and you gotta take drugs the rest of your life and everything, and it’s kind of negative you know. But we found it not to be that way at all. I mean what’s the big deal about taking, you know eight o’clock in the morning and eight o’clock at night she takes a couple pills. Well I take my vitamins, what’s the difference you know? And she’s alive, she’s doing well, and it’s wonderful.
Adelle: I think the information that we had was that the immunosuppressants were going to be horrible, that there were so many side effects that the quality of life was going to be so limited. And that was very fearful to me because my quality of life was already so tragically limited that I didn’t want any more grief. I didn’t want to live sick any longer. And I was very scared of what this monster was that I didn’t understand. And I thought maybe I might not be able to handle it because when they sit down and they talk to you about the protocol and how important following all these protocols were, it was very very scary at first. But having a support group and having, especially a wonderful caregiver, but wonderful personnel. And the doctors and the nurses were so informative and helpful that when it came time everything was smooth. It was all our fears before of not know. Not knowing where to go for help. We spent years, absolutely years, in a pit of misinformation and not understanding. Not knowing how to communicate. It’s very very difficult to have a sick member of your family. When your wife is sick and the children, everybody suffers, and it’s not an easy thing emotionally, physically, all the things that go on. We didn’t know where to go for help.
Q: Did you have any side effects at all to the drugs?
Adelle: For a few months I had high blood pressure. That went away. I did become diabetic. I was not diabetic prior to the surgery. That’s a minor thing. Some people might say it’s a major thing. Hey, I’m alive. I’m diabetic, there’s a lot of diabetics out there. There’s thousands and thousands of diabetics. I would rather be a living diabetic. There’s a tradeoff here. I have had a lot of problems with my weight. I’ve gained a lot of weight since my transplant. But on the alternative I’m happy, I’m alive, and I’m healthy. And I don’t see that I have any real side effects that have given me any reason that I can’t live a full and productive life.
Q: If you could do something to help somebody have the information that they need. You found yourselves in that dark pit. You know what we’re trying to do here. How does that relate to your experience and how would something like that help you?
Adelle: Well I think the Internet is an incredible vehicle. Since my transplant I have been able to get on the Internet and find out a lot of information and I have found support groups, and I have found it to be very wonderful for me. It would have been great had I had been able to find this information prior when I was so ill. I think that this is absolutely phenomenal to realize that the people now who are looking for information would be able to find it.
Joe: And furthermore she communicates with people on the Internet on a daily basis. She has a whole group out there that she’s throwing things back and forth on, and she’s helping a lot of people through that. And also sometimes people call, you can help others. Good dear friends of ours, his wife ended up with the same condition that Adelle had and we were able to be supporting to both of them during their illness.
Adelle: I think you can’t have too much information. I think that our biggest fear was not having information, not knowing. I’m the kind of person that needs to know. I want to know everything. I want to know all of it. And I was very hungry for information and I think most people are that way. And I’m really excited to know that people can log on and get information and get help.
Q: What we’re doing is to hook up the Internet with video, with a DVD.
Joe: Again our biggest problem was lack of information. Like I said earlier my knowledge of transplants was the chances were against you surviving it. I thought it was 30 percent and found it’s in the high 90’s and all. If we had that information I think we would have been a lot more enthusiastic about going forward. But that was the problem, lack of information.
Adelle: Well doctors aren’t very forthcoming it seems…
Joe: Well that’s for sure.
Adelle: …when you’re spending five minutes with them it seems, when you are terminally ill, and they give you this prognosis for your life. You come home and your head is just spinning and I think it would be incredibly wonderful to be able to sit down and have this vehicle of information. And that just thrills me. I would love to be able to go backwards and I can visualize myself finding that information. I think it would have been a lot easier journey for us.
Joe: We did not get the information from the doctors. I mean it was like closed. I don’t know if it’s because of HMO, we’re not rich, we’re not famous you know. We just had no information there. In fact we were very discouraged by the doctor. So we found that we had to take the lead ourselves and look out for ourselves because the doctors weren’t going to do it.
Q: So if you had the ability to talk to people like yourselves and hook you up to the Internet how would that have changed your lives?
Joe: We were so hungry for information and we didn’t really have it. We got little bits and pieces here and there. And to be able to have that available to us, we needed that at the time, wow it would have been so helpful. There’s always questions and things that you continue to have.
Adelle: I think that one of the things that a lot of people don’t realize that when you are really really sick your brain is also affected. Your ability to understand and comprehend is compromised. And sometimes the sound bites that you get from your doctors don’t always register. The ability to be able to plug something in and to be able to see it maybe more than once, to review it over and over, to have the information just right there for you whenever you would want it. Like if it’s at one in the morning or if it’s at two in the afternoon when you want it, when you need it and you’re maybe at that point you’re cognizant and able to understand during this brief period right now I can maybe focus on what it is that I need to understand about my health. That’s wonderful. The availability on a 24-hour basis, seven days a week, any time you might need it.
Joe: Then to hear real people, actually see faces, and real people talking to you who have been there, you know it’s not just something out of a book even though books are very helpful, and a little article here and there is very helpful. But just having people share with you. And instead of just one or two people, hearing it from lots of different people, would be really helpful.
Adelle: I think when you are going through something very catastrophic you are very alone. You are very isolated. It’s so scary. And I think that the more you can be plugged in to something that is informing you but also the ability to see people, as Joe was saying, I think would have been so comforting to me.
Joe: In our case we were fortunate because the support group met just a half hour from our home. But think about how many people that don’t have a local support group. And how do you even find a support group? Something like this might even be of help in that sense too.
Adelle: Well I wasn’t even healthy enough to even go. I mean the support group met at the same time every week but Joe would have to go often without me. I was not healthy enough to even get dressed. And sometimes I can remember getting dressed and not being able to leave the house.
Joe: And then sometimes I’d leave early because your batteries had run down.
Adelle: Finally I’d get to the meeting and I’d sit there and I’d be so grateful that I got there, and I’d have to go home. And I think that happens sometimes with people having to go out to get help. Because when you are really ill you can’t just do that. But if you’ve got the availability of your computer and the Internet and you can have help come to you, I just get goose bumps just thinking about it. I just think it’s an incredibly wonderful idea.
Q: What was the toughest part of the whole process for you?
Joe: The toughest part for me, when it finally sunk into my head, she kept trying to tell me that she was dying. That did not register because I have the attitude that I can fix anything. But this is something that I could not fix. And that left me so helpless.
Adelle: He kind of thought that if I took vitamins and if I took walks with him and I had a healthy attitude, and I thought healthy and acted healthy that I would be healthy. And it took an awful long time for him to really really understand that I was dying right in front of him. He did not comprehend, because he was busy in his own life. And I wasn’t one to go around and whine. I just wanted to go to bed. And to him having a wife in bed for many years was very very depressing. It’s very devastating. We all have our own realities at different periods. And I think that’s very very hard, the loneliness of it, the isolation of dying is I think the worst. I don’t know if I really ever believed that I’d get a transplant. To be perfectly honest I didn’t think I’d be lucky enough. I was prepared to die. I thought I would die. I don’t know if I ever shared that with my family because I think that they held out hope that I would. But I, when I got that call, I absolutely, if I could have, I would have done handsprings. I’ll never forget the phone call. It was like I got a second chance and I never thought that I’d ever get that. And I don’t dwell on the devastation any longer. There is so much to be excited about. There’s, um the hardest part for me at this point right now is finding enough time in the day to do all the things that I want to do. I’m just so grateful to my family for sticking with me, for hanging in there and loving me, and just the amount of people that go into supporting people that are ill. I don’t think, I don’t know how people could survive without a support group and without a faith in God. I think that beyond anything else, my faith in God has sustained me. I have no fear about where I’m going. I have great peace that if I died tomorrow I know that I’ve had a wonderful time. I’m just very grateful for all the time that I’ve been given. It’s just a gift.
Joe: And you’re my gift.