Matters of the heart, both emotional and clinical, have preoccupied Margaret Schroeder since Nov. 25, 1984, when her husband, Bill, now 53, became the second person in the world to receive a permanent artificial heart. She welcomed his decision to volunteer for the high-risk experimental procedure because during the months before the operation she had watched him steadily dying. She was quite unprepared, she says, for the aftermath of the 6½-hour implant by surgeon William DeVries. Schroeder's year of suffering has been agonizing for Margaret, also 53, his devoted wife of 33 years and the mother of his six grown children. Today Schroeder is the longest-surviving artificial-heart recipient, but under the cumulative impact of three debilitating strokes, the last on Nov. 10, he is now unable to speak or to sit up unaided. With Schroeder incapable of expressing his feelings about the quality of his life, Margaret is troubled by her role as the protector of his best interests. The whole family is aware that the plastic and metal Jarvik-7 heart unit has already pulsed 40 million times and will continue to work, regardless of his condition, until someone decides to turn it off. Meanwhile, Margaret is at his bedside at Louisville's Humana Hospital Audubon about 12 hours a day, leaving only for meals in the hospital cafeteria or when one of their children insists that she rest. The anguish of witnessing her husband's distress has so exhausted Margaret that physicians ordered her back home to Jasper, Ind. for six weeks this fall to recover. On her return to Louisville, she spoke to correspondent Giovanna Breu in the specially equipped apartment she has shared with Bill for a total of four months, and where she still awaits his return.
I think if he weren't tough he wouldn't have hung on this long. He'd say—pardon the expression—"The hell with it. Turn the machine off, I'm going to quit. This has gone far enough." But he never said that to me. I wish I knew what he was saying right now. He's always looking at me with his eyes. You can read into it what you want to and I really don't know, but I'm going with what he told me at the start. To me he looks to be saying, "Let them do whatever they can, and get what information they can." I hope so, because I feel that there is a purpose to this and he wouldn't be fulfilling his life if he doesn't do everything he can.
If they tell you that you have a chance to live, you take that chance. Bill was a guy who would take a chance all his life. Bill loved us and what he wanted to do most of all was to be with us.
At first I thought the artificial heart would get Bill better. I thought it was going to be just like curing a disease: You go to a doctor and get cured. I don't look at it as an experiment because to me an experiment is something you do in a laboratory. Bill's not an experiment, he's part of our family. The experimental part, I suppose, is to find out if the heart is working. Maybe the doctors can help with the problems the heart has caused, like the strokes. I hope the doctors can find out if the artificial heart can really work or if it is only going to be a bridge, because in the future maybe our grandchildren or their children might need it.
I'm still waiting and hoping and praying that he gets his strength back and his speech back. I think he's stronger, and he can move parts now that he couldn't a week after the last stroke. It is just that his speech hasn't come back. He makes noises. I think it is there but he can't bring it out. I think Bill is weak, and very tired. At his best, he is still not the way I'd imagined. I'd pictured him able to come home and carry the portable system that drives the heart, and we would go on with our lives. Maybe it's been so tough because the first few days he was able to do those things. Before his first stroke he put the portable across his shoulders and ran down the hallway. It was so exciting and I thought, "Maybe it will work out really well." I didn't even think about a stroke.
Bill never fully recovered from the first stroke, but he was able to go for occasional outings in his wheelchair and could say short sentences. One of the nicest moments was on Christmas Day last year. Dr. DeVries and his wife, Karen, were both at the hospital and helped Bill unwrap some of his presents. On New Year's Eve, right at midnight, Dr. DeVries walked in with his wife. You know it's a time when families are important and it was real nice of them to include us. I felt like putting my arm around him and giving him a hug.
By April this year, Bill was sufficiently rehabilitated so that he could move into the Louisville apartment with Margaret. Humana provided 24-hour nursing care. Less than a month later, on May 6, Bill suffered a second stroke. He was left with weakness of his right arm and leg and was unable to speak.
The second stroke was terrible to me and I thought, "That's it. That is all there is because I don't know if he could make another comeback."
After seeing Bill live through it all, I would say, "If I had to make the choice, if there was nothing else, I'd probably do like Bill." To other families out there that might have to face it sometime, I would say, "Stick behind your husband, or whomever it may be, all the way. Let him make up his own mind."
If I had to do it over again, I would read the consent form very carefully and talk to someone who has been through it. I would want to put into the consent form some things that would help the family. They don't have anything that says, "How far down the road do you want to go with this before you call it quits?" I wish Bill had written down on the consent form at what point he would want to say, "Stop this. I've had enough."
I sometimes wonder if I am doing the right thing for Bill. Right now I would give anything to know what he would say. If I were to say, "Turn the machine off," that would be just like abortion to me. It would be killing. We have not discussed turning off the machine. Maybe Bill has thought that by turning off the machine he would make life easier for us. But we told him that whatever he decided, we'd back him up.
So far we have not had to make that decision. I have to leave that to Dr. DeVries, and he's been real honest and tried everything he can to get Bill back on his feet. But some time out there, if not this time, then the next time, we know he's not going to be able to do this.
I don't think that the patient can make an artificial heart work unless his family is behind him. He has to have support and love. I don't think one person can endure all this by himself. The children have been great to Bill. They are up here in Louisville during the week and on weekends. They give up all extra activities. If they have a weekend off they spend one of the days up here.
I don't understand it all myself. Sometimes it seems like we've been picked on. It's not really so, but we've had our share of misfortunes. We've been lucky with our children—no real sicknesses at all. But with Bill these past few years, we've had nothing but sickness.
Bill rallied again, regained some speech and by August he was well enough to be transported to his home in Jasper for an Aug. 4 festival.
We went back for Strassenfest, a German heritage celebration, and the city made our family the official hosts. Dr. DeVries was the grand marshal and it was real sweet. Bill just loved it. He was waving to everybody. I never knew there were that many people that cared. They came from miles around, and I knew that if they'd come that far to see Bill, they really cared. Bill said, "I'm home," and it was worth a million dollars to us just to hear him say that. He looked around and he named people that he hadn't seen since the beginning of this thing. We were really surprised. I thought, "If we can get him home, I think he'll hang on and he'll fight even harder, if there is such a thing."
Yet all the ground so painfully re-won was lost to Schroeder when he suffered his third stroke last month. Doctors report that the damaged area of his brain is healing, that he can recognize family members and that he tries to speak.
He's fighting again, and Bill hasn't given up on himself or the people of the world. I remind him every day that people are praying for him and wishing him well. Today he got several letters and I read them to him. They are all special. One was from Guam, that's a long way off. I have another letter in my purse in Polish. I need someone to translate it. I feel like he owes a big part of his life to all the people out there, because they have cheered him on and prayed for him since the first day. We get letters that say, "Bill, how are you, we don't hear about you anymore." I think people all over should know that Bill is doing as good as he can after having those strokes.
Now that he is back in the hospital I am kind of lost and lonesome. I sometimes wonder if I'm doing the right thing for Bill. If you weigh the good and the bad, I don't know which one would come out ahead. But I want Bill with me as long as I can and whenever they don't know enough to keep him alive, then I'll accept it. But I'm going to go all the way—as far as he goes. I think there is a purpose to all this, otherwise Bill would not be so strong.
You know, last Valentine's Day was Bill's birthday. A heart on a sweetheart—nobody's thought of that. Those are the things you can't replace. You just hang on to them. Dr. DeVries really believes in the artificial-heart program. I think that it will work if he has a chance to prove it. I'll say one thing: Dr. DeVries will never have a patient who will work for him as hard as Bill has. He really has given his all and I think Dr. DeVries knows that.
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