Roger G . Interview

With Roger in dire need of a liver transplant, one of Roger's best friends passed away, and his family donated Roger his liver. Now post-transplant, Roger talks about the experience, his relationship with his son, and the osteoporosis that plagues him.

Roger: I was diagnosed as having cirrhosis of the liver around seven or eight years ago but nothing ever really happened from it you know. I was feeling good; I didn’t show any outward symptoms of being sick, until I don’t know maybe four years ago. I started throwing up blood. I started uh a lot of really gory things started happening to me. And I went into the hospital and had an operation where I had my spleen removed, and the head nurse, a personal friend of mine, told me after the hospital that I had a real bad case of cirrhosis and was in dire need of a new liver. And my doctor put me in touch with UCLA Medical Center and they put me on their waiting list. I was on their waiting list approximately three, three and a half years. We didn’t really think anything was going to happen because of thousands of people waiting on the list and it’s real tough to move up. And by an act of God, whether it be Buddha or Jehovah or whoever, a miracle happened for me that an organ became available to me. A personal friend of mine passed away from a stroke and he had a sister-in-law that was that same nurse that told me that I was in dire need. And she convinced the Ortiz Raily family that it would be a good thing for him to do and the family to do to donate his organs, especially to me having been a personal friend of the family for about 30 years. And I watched Dennis’ children grow up from babies and they are in their thirties now, and we have this thing where we’re a family, a circle of friends, and they showed that to me by doing that. They did things for me that my own blood family wasn’t willing to do, and I will forever be grateful to them for that. They did probably the most Christian thing that a person could do and that’s to give of themselves. And Dennis I don’t believe was even a person who believed in God. I may be wrong but I don’t remember that side of him. My father and grandfather both passed away so come Father’s Day I really had nobody to celebrate Father’s Day with except my son, and I was blessed by an invitation from the Raily family to spend time with them. So as far as I’m concerned, as far as their family is concerned, my donor Dennis Raily lives on in me. I’m one of those fortunate people who can personally thank those donors. I wish everybody had that opportunity because there is nothing like that to be able to say thank you to that family. And know then, be able to see them every day, and have a special feeling for a person. It’s uh almost the same feeling that I have for them that I did when I met my wife. It’s a love is real hard to explain. I don’t think I feel that way about any other people including my own family. All I can say to them is thank you.
Q: Did he actually will you his liver?
Roger: His family designated his organ to me and, I could be wrong here when I say this, but it was either I get it or nobody get it. And in that designation if I got the organ they could have whatever organs they needed for other people. And other organs were given and helped save other lives, not just me. I don’t know who the other people are and I don’t know if the Raily family even knows. But in my particular case it was personal friends that took care of me.
Q: What was your life like before your transplant?
Roger: I was an active athletic coach. I coached basketball and football and I was pretty successful at that. And I started getting sick and my coaching time went down, I was no longer able to attend games, practice sessions, what have you. And it slowed me down quite a bit. Last summer as we speak I started a project at my house, we were doing rebuilding of some of the rooms, and I had to stop physical labor because I was so run down. I couldn’t do anything any more and I had to hire a couple of my friends to finish the job. And that’s pretty frustrating when you’re doing something for yourself and you can’t do it. I was getting quite angry at that. I was slowed down, I could no longer go downtown to do stuff that I liked to do. I started taking a lot of medications and it just completely slowed me down to the point where my life was my room, that was pretty much it. I stayed in my room or I went to the doctor’s office and that was pretty much it. It’s real hard to live your life when you’re confined to a small room. It’s not a lot of fun. The quality of life is no longer there.
Q: How did you cope with that?
Roger: Well I’m a wannabe musician and I had a couple of thousand titles, albums, CD’s, what have you, at my house. So my music pulled me through, especially I’m a big Grateful Dead fan and I was able to attend a few concerts when I was sick and listen to a lot of Dead and started writing music, and wanting to play but not being able to play was one of the frustrating things of my life. But I’ve been able to pretty much live life and use my music as medication. My music helped me a lot.
Q: How did you cope with needing a liver and the fact that you might not be able to get one?
Roger: That’s a tough question to answer. A lot of times I just didn’t think about it. If it happened it happened. For me I didn’t really believe I was going to get an organ until the day of my operation when I saw the helicopter landing and they brought Dennis’ organs and the doctor pointed the helicopter out and said “There’s your donor right there”. It wasn’t until then a big black helicopter landing on the roof of UCLA that I believed that it was going to happen for me. You know it’s real hard day after day and you get false alarms on the pager that they’ve given you, and they call you up for dry runs, or they say they have an organ for you and you get there an it’s not right for you, or whatever. And it’s real tough. I wouldn’t wish that on anybody at all.
Q: What was it like when they said it was time for your transplant and what to do you remember right after?
Roger: The morning that UCLA called me, I got a call from my friend Chris Ortiz the nurse that works at Santa Paula Hospital, notifying me that I was getting this organ from Dennis. And about eight hours later UCLA called me to confirm that. My wife and I were sitting and watching a Laker game and the nurse at UCLA asked me if I could be there in an hour. And I told her there was no way. I was all dirty and everything from having done some yard work and I needed to take a shower and what have you. And so she said come in a couple hours, we’ll let the guards know you’re going to come in a little late. So we went to UCLA and it took them about four or five hours of asking me questions, prepping me, watching the helicopter come in and all that. All during that time I was terrified. I spent time in Vietnam during the war and I remember a shelling that scared the heck out of me, and I was more scared this time than I was then. Then a nurse came in and started talking me down and trying to make me easy and that didn’t help. Didn’t help a bit. They operated that morning at four o’clock in the morning, I was the first one. And I had the best surgeons in the world there. I don’t think anybody has better doctors than UCLA does.
Q: It was a pretty quick trip all of a sudden.
Roger: It was just like after three and half years of waiting it was like let’s get it done right now. And that’s pretty much what happened. The operation was on a Friday and it took the better part of the day. I believe it took them ten hours to do my operation. So I was on the table a good part of the day and I don’t like to waste time, and knowing that I was on that table for ten or twelve hours I felt like I wasted the whole day. I woke up the next day, Saturday, like nothing had happened. I was wide-awake, I was ready to go. I couldn’t move but I was alert and everything. The doctors were amazed. They thought I was ready for recovery and I pretty much was. I stayed in ICU about seven days only because it was a holiday week and they were real short crew. But I stayed there for seven days and healed real well and they sent me to the general population part of the hospital and I became a jokester in the ward there. I felt there were more people in there that were sicker than I was and they needed support. So I was tearing myself, holding up the wall and everything, and going from room to room meeting people who I felt were in worse shape than I was. In a lot of cases they weren’t but I think it was an aid to me. It helped me get better.
Q: Who was taking care of you?
Roger: My wife, Maria, has been my caretaker, and my son Eric is also my caretaker and I couldn’t ask for a better crew. Eric is off to school right now and he’s a fulltime caretaker. He’s at that age when he wants to be at the beach and everything else enjoying the summer, but he’s sticking to me like my shadow, and I wish good things for him the rest of his life because of that. You know a lot of people would feel obligated because he’s my son and what have you, but he’s doing out of the kindness of his heart. I think it’s a big thing. It’s going to help him grow a lot. He’s a good kid. And my wife, what can I say. Been happily married to her 25 years and she’s the best thing that ever happened to me, followed closely by this transplant. She’s been there every minute of every day. I couldn’t have asked for a better partner in life.
Q: I noticed that some of the medications had an effect on me, did that happen to you, and did it affect your relationship with your wife?
Roger: Prednisone in my case has been the menace. I started having bouts where I was fighting myself. I was real angry and I would yell at my wife and cause a little bit of problems. But the main thing that it started causing physical problems. I started losing the use of my legs because of Prednisone and we later found out it caused massive osteoporosis in my hips. The doctors were amazed that happened so quick. I was only on Prednisone for about two months and the doctors said I had one of the worst cases of osteoporosis he had ever seen. The other drugs that I was taking for the most part haven’t been real tough on me. I think the hardest thing to do sometimes is just to remember to take them. You knows I went from 64 pills a day, I’m only taking about 20 now, and even that 20 blows people away. They ask me every day how I can eat so much medication. It’s not a problem if it keeps you alive, ha.
Q: If you were to talk to somebody who is waiting for a transplant, like the gentleman who is inside the house waiting to be interviewed, what would you tell him?
Roger: I think the first thing I would tell him is be ready for a real rough ride. Not trying to scare him but to make him aware that it’s not a gravy train. The gift of life that he’s gonna get is truly a miracle from God, but I think God expects you to pay for it. And that’s your cross to bear. Everybody’s going to have a different journey, but like in my case I think it’s the walking. In other cases some people put on a lot of weight back on and have no way to lose it. There’s different cases and I would tell the gentleman inside that to make himself ready for it. Get in shape, it doesn’t hurt, and eat well before you go into the hospital because you’re not going to get much good food there, ha.
Q: If you were waiting for a transplant, what would it be like to be able to have access to information in the palm of your hand?
Roger: If you could have something that would help you from the very beginning, if you could have all the information that you need. It’s slow going on the vacation I guess. If you read the map and you know where you’re going it makes it a lot easier to get there. And if you had something like this available to you where somebody has been there, can tell you what it’s like, gosh what a gift that could be. I wish I had something like that, or even somebody to talk to. There’s so many tools available to you. There’s awareness groups or support groups but, I don’t know, something like this would really be what I think is a gift.
Q: What do you mean by this?
Roger: A CD, or DVD, or a book, or anything that could help you. It’s not just something written clinically, it’s done by people who have been there, who have gone through the process. You know, done by somebody who can tell you, “Been there, done that”, and make it easy for you. Truly a gift.