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Interview with David Crosby and Hepatitis C Virus
The following conversation took place on December 5th, 2001 between David Crosby, David Maxwell & Eileen Lavalliere in Boston.
DM-Good Morning David, I am honored to be able to have this conversation with you concerning your personal struggle with Hepatitis C Virus and with your trials and tribulations with organ transplantation.
DC-Good Morning David and Eileen, OK What is your first question?
DM-I kind of wanted to do your story about how you first came about knowing that you had the Hepatitis C and your very first troubles with it. If you could give me the story on that.
DC-We were working on the record, After the Storm, in the studio and I was feeling really crappy. I would get to the studio and feel like lying down. I felt like I had swallowed a basketball too and I was eating well at that point. I was on a diet and trying to be healthy and I was feeling really bad and I couldn't understand what was wrong. I would get to the studio and I would be all charged up to record and just feel like shit. I would lie down and the other guys would make fun of me about it and say god, Cros you are really wimping out and you're getting old. It was mostly playful but it really hurt.
DM-Did you think it was old age?
DC-I didn't know what it was but you know you go on. I went on and we hit the road and it got to the point where two of the guys would have to help me off stage at the end of the set. And then half carry me to the bus. I said well geez, something is pretty seriously wrong here. So we were in Washington DC at the time and I drove up to Johns Hopkins in my bus and spent, I don't know, 12 or 24 hours there and they said well we know what it is and I said ok what is it? They said well you have Hepatitis C, you came up positive for Hepatitis C and you are in a lot of trouble. And I said ah bullshit.
DM-That was your immediate reaction-denial?
DC-Yeah, get serious. And they said that's what it looks like, so I said to myself yeah right.
Dm-You said want to do the test again?
DC-Yes and I went to UCLA. We shortened the tour because I couldn't keep going and I went to UCLA and a friend of mine there, a guy that's head of internal medicine, named Gary Gitnick. They ran the same tests, he got me in his office, and said well, David, its my job to tell you that you are dying. You are dying and you are going to die pretty soon if we don't do a transplant on you. You're in the last stages of liver failure. You have maybe 20 or 30 percent of your liver functioning. You have all kinds of symptoms. The blow up thing is ascites. So what is acites? He said fluid gathers in your body because you don't make albumin any more and you are leaking and its collecting in your plural sac there. And you are a very sick boy.
DM-I imagine at this point you were very afraid too?
DC-Very afraid, and I was already suffering from encephelopathy. And I was already suffering from jaundice and I had symptoms all over the road.
EL-You just ignored it?
DC-No, I just didn't know what it was. He told me. He made me listen. He's a friend and said look its not the end of the world, we will just put you on the list right now, right here and we've got the best transplant surgeon in the world. He name is Ron Busuttil. It turns out he wasn't lying, he does have the best transplant surgeon in the world, the guy's done more transplants than anybody else in the world. And he has the highest survival rate of anybody in the world. And he is the best. And they did work ups on me and they said this is very late stages, they said it's too late for us to try Interferon or Ribavirin or anything else. The only thing that's going to save your life is if we do a transplant. They gave me a beeper and sent me home. I was immensely depressed because at that point the IRS was trying to take my house away and so I felt like I was being assaulted on all sides. I had an accountant that didn't pay my taxes.
DM-I am sure at this point you blamed yourself and others, and your lifestyle?
DC-You know I knew that drugs had exacerbated it without any question but the Hep C, we don't know how I got that. It could have been from needles or from any kind of blood transfer. But I don't know.
DM-Like a lot of us.
DC-30 to 40% of the cases don't know how they got it. So we don't know. One of my friends who has it right know, is one of the best bass players in the world. He has never taken a drug in his life, never had sex with anybody else besides his wife, and he's got it. So it's very tough to figure out how it all happened. It happened. That much is sure. And I was very sick by that time. Finally I went to have a set of tests and I went home. They called me back up and they said, listen this set of tests is so bad that we want you to come down to the hospital because we don't think we can keep you alive on the outside. So they took me to UCLA hospital and I was there for 71 days. I had already been waiting on the list for 2 or 3 months, a long time, and then it went on and on and on in the hospital and I deteriorated very rapidly in the hospital. I had a lot of side effects and things that were failing and how that works is that your liver fails, it does so many things in your body. It controls 300 different functions, so as it fails more and more stuff goes haywire and then they have to give you medicine to correct that and those medicines have side effects which then they have to give you other medicines. So it is a house of cards that they have to build. And it is a very scary and precarious feeling.
DM-How did you deal with telling friends and family, was it hard for you?
DC-No I am a pretty upfront guy. I don't really keep secrets and I just told them. I said you know I have this thing and I might die and I might not. I am hoping I am not going to.
DM-Was that the same as telling the media?
DC-We didn't tell them, I didn't think it was really any of their business..
DM-Were you afraid they would make a circus out of it?
DC-Well they did. Of course they did. I didn't see any need to add to it or help them out. I don't pay much attention to them anyway. But it was amazing while I was in there my wife tested pregnant and so she was pregnant with our little boy Django. I really did want to make it. I wanted to see him get born.
DM-I am sure that added a lot of support.
DC-She was the most supportive of anyone in the world. She was there every day, all the time. I have a lot of what the French call raison d'etre. Anyway I have a great gig in life, I am naturally a pretty happy guy and I really love my wife and I love how my life goes. I didn't want to give it up. I was pretty scared, I was definitely scared. I was really sick.
DM-How about anger?
DC-Yeah I don't know if I had a lot, I had some because I had been clean & sober for like 9 or 10 years. And I thought, fuck, you know I have been doing the right thing and trying as hard as I can here in life, staying away from coke and heroin and I hadn't even taken a sip of beer, I was totally straight. And I had this per petulant baby sort of thing. How can you be doing this to me when I have been good? It was turbulent times, because right about then I had found out about James, my older son. So you know, you are dying and your wife is pregnant, and by the way your son is a musician. The one you have never met.
DM- And never knew you had one?
DC I knew I had one out there.
DM It must have been a lot of emotional impact.
DC-Yeah it was a lot. It was a scene.
DM-Let's get to your transplant. The year it was?
DC-November 18th, 1994.
DM-How long were you in recovery after your transplant?
DC-It took a while, they had to cut me four times.
DM-Did you have a strong support group behind you?
DC-Very, my wife was there every day, without fail. All day long, every day.
DC-Good Doctors, UCLA is an amazing hospital. Very, very fine doctors, it is a teaching hospital. The best ones are, Mayo, Johns Hopkins, UCLA. And friends, I had a lot of friends. Nash would come over and bring me dinner that Susan had made, Jackson would come over and sing me to sleep.
DC-Yeah, he's a good guy. And other people would come bring me Christmas lights to put up in my room or posters to put up on the wall, and other stuff.
DM-I am sure a lot of fans would send you mail by the bagful.
DC-Yeah, it was a funny thing. That is actually how I found out about James. This was the first time all those fans knew where to find me. They knew right where I was. I was in that building right there, it said so on CNN. So what's the address on that building? Ok...Dear David Crosby... They were bringing mail in armload baskets, 3 to 4 times a day. Hundreds, hundreds, hundreds, and I got three of them, one of them said I know who your son is, and I will tell you if you give me money. So I said no, its not supposed to happen like that. I know he is there and I going to find him, but not like that.
EL-But did he know you?
DC-He knew who I was by that time, but he hadn't contacted me yet. And the second one said I never got all the breaks you did, and so if you get me a recording contract I'll tell you where your son is.
DM-Nothing like extortion there?
DC-Yeah, nothing like it. There has got to be a real one. So I waited and there was a third letter and it was from the parents who raised him. They said our son James is your son, we raised him, he's a wonderful boy and he's a musician.
DM-Did you have any spiritual inspiration?
DC-There was quite a bit searching in that direction. I had felt for a very long time that I had wanted that anyway, I am not trying to say what anybody else should do, but I felt that I wanted to have a spiritual content in my life, some kind of vision quest, some kind of higher stuff going on. It actually feels natural to me, and I don't have to intellectualize it or I don't have to prove it, I don't have to disprove it, I just have to believe what makes me feel good, and makes me a good human being. I believe in Karma, I can't prove that Karma happens, but it makes me behave better. If I believe that putting good stuff out there comes back to you then, and then I tend to want to put good stuff out there. So I believe that there is a spiritual level to things and there was a lot of searching going in my head then because I wanted to go to the place where the Buddhists go which is, this is all just part of being alive, dying is part of the circle. There is no doom here, it's not that Judeo Christian thing where you go to hell, you recycle. Death is the beginning of the next great adventure. That's a great place to look at it from. It's harder to get to there if you have spent all of your life in the Western World Judeo Christian kind of death is awful, death is bad, death is the end, kind of mind set. But I was trying to put myself in the other place as much as I could. I thought that was helpful.
DM-How do you feel about your celebrity status? Did it have anything to do with being a donor recipient?
DC-Only to the extent that I took more flack. As far as receiving it absolutely not. I got on the list, and how it works is they give you coded numbers that say how sick you are. And you are on a list with a bunch of other people waiting for organs. The sickest person that matches that organ, gets that organ. It has nothing to do with who the hell you are. It has to do with who's the sickest person.
DM-It has nothing to do with wealth or social status or anything?
DC-No it absolutely doesn't. At that time I was going thru it, they did the one time that I know about where they somebody actually blew that very, very strict code, and that was with Mickey Mantle. Mickey Mantle is an American icon, and some doctor blew it. They should never have transplanted Mickey Mantle, he had cancer, liver cancer. You don't transplant people with liver cancer because it invariably comes back. By doing that, it brought the whole process into question. Other things did too, Papa John getting one and then going back to drugs, and back to drinking. That called it into question also. Why are we doing this for these people if they then say we have got a free ticket to do it again. Which is a valid criticism. But there was at that time, a feeling that we were getting special treatment. People want to believe that. I mean people in the outside world are so used to being cheated by people who have money, and by the system. They are so used to people with money getting preferential treatment, that they believed it. And there was some criticism, there was one guy, a radio jock, who was convinced that I was getting a free ride. He had none of the facts, and he had no idea what was going on. It was just good radio. He could sell more cheese that way, by stirring up trouble. But how they do it is scrupulously honest. It's very very carefully monitored and they do not mess with it. The sickest person who matches that organ, gets that organ. And I almost didn't make it. They had one and it had a tumor in it. They had me prepped and ready to go into surgery, and they found a tumor in the organ. And they had to unprep me. That was a really hard night. And then after a very long time, they found one. And that guy, that young kid that died, saved four lives that night. Liver, heart, pancreas, kidneys.
EL-How old was he?
DC-He was thirty-four.
DM-Have you ever met his donor family?
DC-No, we didn't do that.
DM-Have you ever felt his soul?
DM-In what kind of way?
DC-When I woke up, when I got out of the ICU, one night I had what was probably a hallucination behind the morphine. I had a distinct feeling that there was this soul, slanting up and out, and it was leaving finally, but it had been hanging around, and now it was going. A distinct feeling.
DM-How did your transplant impact your attitude and change your life?
DC-I had been straight for a long time, about nine years when I went into the hospital, completely. Going to meetings. How it affected my life was it made me as you would expect, more aware of the importance of life. We get this little brief period here and you have to treat it as if every second is the most valuable pearl in the world. Its just changes how you look at stuff. Little stuff gets to be little stuff. Your kid and the time you spend with your loved ones, and the time you spend creating art, that's big stuff. Getting pissed off at the world or being greedy, or making a ton of money, getting back at so and so for the thing they said, that is the little stuff. And you might end up saying God, I almost didn't have any time left here at all, and now I've got some, and I don't know how much. And I'm not going to waste a fucking second of it.
DM-What kind of medications are you on now?
DC-I take Prograf.
DM-Will you have to take it for life?
DC-I am told that until that come up with some new technology, yes I will have to suppress my immune system. You know the reasons behind it, when you transplant an organ the organ has a different DNA code. And your immune system, your T-Cells, your white cells, think its an old shoe that got left in there that night the guys with the knives came through. And they don't know that it's your liver and it's saving your life.
DM-So it wants to kick it out your body?
DC-Yeah, that thing has the wrong markings, and so you have to suppress the immune system, currently. There are other ways to do it and they are working on it. I'll give you a good example, women's bodies already know how to do the trick we need, because babies have a different DNA than their mothers. They don't reject babies. Women already know how to do it this way. They already know how to suppress that rejection. If we can figure out how they do it, we can figure out how we can do it. There is a lot of stuff they are working on all the time. Tomorrow I am going to San Diego to play at a convention of liver doctors, and just when I was talking to them about going there, they were telling me about new stuff they are doing that is just amazing. For the time being, yes, I'll have to continue to suppress my immune system, and that makes me a little more susceptible to other things.
DM-What about side effects from this medication?
DC-Well they are a little hard on my stomach anyway, but not on everybody's. So I take stomach meds to try to calm it down.
DM-Any sexual dysfunctions?
DC-No, my youngest kid is about two.
DM-Well that answers it right there. What kind of lifestyle management must you follow like diet or exercise?
DC-Well at my best if I am eating just protein, I can beat my other disease which is diabetes. And if I eat just protein and no carbs I can beat that. I beat it all the way to the point that I could get a class 3 medical for a pilot's license. But I can't stick to it all the time. Somebody always brings me crackers or bread. But it means you don't drink, obviously you don't do hard drugs. I have friends who smoke marijuana for reducing pain and because they like it.
DC-No, but its not Hepatotoxic stuff. So as far as lifestyle, yes, I try to treat my body better, which is funny to do when you are middle fifties. And I walk about a mile a day. And I do more when I am on tour. We go to the gym, try to do other stuff too. Just to keep my stamina up to be able to play. And that's about the main thing.
DM-So your restrictions on life are that basically you can't drink alcohol, any other restrictions on life?
DC-You can't drink and you can't do hard drugs, I think I could smoke pot and it wouldn't matter.
DM-Who paid for most of the transplant, did insurance cover it?
DC-Insurance, yes, I had very good insurance. I am a member of SAG as well As AFTRA, and between them they shelled out about 3 hundred grand. It is one of the tricky areas about this thing, is that if you don't have insurance, you die. Because it is such an expensive operation, nobody does it Pro Bono. So if you don't have insurance or have a quarter of a million bucks lying around, you're dead. That is not the way medicine is supposed to work, it is supposed to be equal for everybody, but that's the facts. You can get around that by going outside of the country. There are places in the world where you can buy a liver. And that guy ends up in a dumpster that night, and you get his liver. The problem with that is the surgeons are butchers. Surgeons here at least are the best there are.
DM-Where do you stand now as far as your disease progression? You still have the Hepatitis C?
DC-I still have the Hep C, but I am back at the beginning. I am showing almost no signs of it.
DM-Is that via liver biopsy?
DC-Yeah we do biopsies every once in a while just to check, every couple of years. I just had big check up at UCLA, they think I am one of their main successes.
DM-And liver functions?
DM-So at this point it is not a major concern in your life, except for possibly liver cancer?
DC-It's a concern as far as I think about it all the time, which I don't. It's a consideration. You know that your life is more fragile than most people's, and most people's are very fragile.
DM-Have you or your doctors ever considered Interferon treatment?
DC-They haven't suggested it and I would resist it.
DM-You would resist undergoing treatments?
DC-Yes, because it is very similar to chemo, you are taking poison in your system, and it's a hideously unpleasant process. I have a friend who went through them recently and he told me it was just awful. All my friends who have gone thru it all the way, that I know about, have told me that it is a really really bad experience. They said its chemo, you are doing chemo. I would resist that. Particularly since I am doing pretty well. Who knows how long I am going to live, I would like to live a long time. But we really don't know long transplant recipients live.
DM-Is there anything you would like to add to encourage others with Hepatitis C Virus to do or to follow in the personal fight with the disease?
DC-Yes my best function in trying to communicate to other people, so far has been to stand there and say that hey, I am out here on the other side of the river. You are looking at what seems like an insurmountable obstacle to your staying alive, and you are scared to death. But I am over here, I went through it, I am out the other side. I have had three children since it happened. I am rocking; I am about to go out on a 12 to 16 week tour with CSNY, playing 20,000+ seaters. I fly my own plane, I drive my own cars, I sail my own boat, I live a fantastically good and very active life that is full of love. I have a great family, I have been with my wife 25 years and I try to point those things out to somebody who is talking to me, and say look, you have to consider that it can work this way for you. You have to put this in your head, not your fears. If you put this in your head, that it can be this good out on the other side of all this trauma that is headed at you, then it gives a thread through life to follow. And frankly your attitude has a lot to do with how well you do. I get asked a lot, Hagman, when he first got it (liver transplant) asked me over to his house to tell him what was what. And Phil when he first got it, we talked a lot.
DM-There is a lot of us out there with it, and a lot more than they are saying.
DC-Yes, more than they are saying. The current National Institute of Health that was published in either AMA or New England Journal of Medicine, they thought there was something like 2.7 million cases in the United States. World Health Organization says 5 million in the United States at least and they say there are upwards of 120 million in the world. Almost all of them do not know they have Hepatitis C, and are merrily passing it along. And the only place they can do anything about it at all, they can even detect it, is in North America or Western Europe. The rest of the world, places like in Africa, the medical infrastructure has already crashed behind the AIDS. You hit them with another one and they don't have anything to come back with. There are surviving on the end of a long thread. When this one really hits them, this thing is going to decimate populations. Any place where the medical infrastructure is already down or never really got up, and anyplace where the people live very closely together, Southeast Asia, China, India, it's going to be bad. We have really no handle on how to deal with viruses. Virology is really working like crazy on how to figure it out, but we don't have a medicine for viruses. But these ones, AIDS & Hep C, are shape changers. The two main mutagens are radiological and chemical environment. But we have changed those two things in the last 50 years, dramatically, from where they were before. And that's causing things to mutate and what mutates first is the things that go through generations the fastest. Bacteria and viruses and that's why we have brand new diseases. And that's why we are going to have more. The word I heard is that we are already up to F & G (Hepatitis). So that's not a pleasant prospect, if they get an aerosol transmitted one, we will lose 90% of the human race.
DM-What do you think could be done to make the public more aware of this insidious disease?
DC-That's a very tough thing, they don't want to hear, they don't want to know. They don't want to know about AIDS either. They want to get home, have a beer, eat some crap food and watch TV. They don't want to know that there is a threat to their lives, their lives are already shitty enough. And they don't want to know. So what are you going to do? You try. You do billboards, you do books. I've done those things.
DM-So besides books and billboards what do you do now? Do you have any plans for public education on organ Alternative Treatments or Hepatitis awareness?
DC-I feel very strongly about the organ donor thing, because you know its only some kind of admonistic kind of primitive religious silliness. That you have to be buried with all of your parts. That's bullshit, when the spirit leaves its ashes to ashes, and dust to dust, man. This is just a meat suit. This is just parts. The spirit is the thing, the spirit to parts. How anybody could not help someone regain their sight by donating their corneas or get off of kidney dialysis machine by donating their kidneys or save the life of a child, and children die every day because we don't have a liver or heart for them. Its bad enough people, but children at the beginning or their lives.
DM-Do you do anything at your shows?
DC-What we do is we table all our shows, we have tables out in the front of the CSNY shows, you will see them, there are tables there for Greenpeace, or I don't know whatever. But we will also have tables to make awareness of Hepatitis and Organ donations. They will be in prominent spots, right out there, for everyone to see. We will also have people handing out information and pamphlets concerning these issues. I don't do much on stage as I am being paid to entertain, not to preach, but we got it out there.
DM-David we are truly blessed by your candor and generosity to lay bare the facts of your personal life and struggle with this life & death disease that surrounds many of our lives and impacts our loved ones. I hope by agreeing of the posting of your story to our discussion board you will inspire others to keep up the fight and that there is hope and light for us all. And maybe we can even educate some to prevent further cases. Thank you for all the joy and music you have shared over so many years. Thank you and good health.