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How Tom and Monica got their second wind.

How Tom and Monica Got Their Second Wind

Tom Hall, a pulmonary-fibrosis patient in Toronto, feels fortunate to be counted among the living. In January 1983 the doctors gave him about eight months to live, and he was on oxygen 24 hours a day. "At that point I was looking for a transplant,' he said, "but they kept telling me that I was too old and that 50 was the cutoff in the U.S. They thought that would be the figure they would go with here.

"My doctor had tried many experimental drugs to see if he could halt the disease. He couldn't. And eventually he said, "Well, you know, we reassessed you and you probably have only about eight months to live, but there is not a heck of a lot we can do.' I said again, "I would like to go the transplant route.' He said, "I'll talk to the surgeon that does them and set up an appointment for you, and you can talk directly to him.'

"So that's what I did. I tried to convince him that chronological years weren't the answer . . . that if I had a will to live and a purpose, perhaps I could make it through. I guess I did convince him, because he said that at that point they would test me, and if all my other organs were in good shape, they would consider me.

"They ran a whole series of tests and found my heart and everything else was working well, so they agreed to take me as a transplant recipient. They gave me and all the medical team pagers so that when they got a lung, could page me and we'd all head for the hospital.

"Then one Sunday, after waiting nine weeks, I got a call from Dr. Cooper. He asked me what I was going to have for supper. I said, "I think we are having roast beef.' He said, "You are not having any. We've got a lung for you. Come on in.' And that started the ball rolling.'

Dr. SerVaas: Then you rushed right over to the hospital?

Mr. Hall: Yes, we went to the hospital, and a couple of doctors from Toronto flew down to Montreal to get the donor body and chect it out, then flew it back in a special aircraft.

Dr. SerVaas: An ambulance type of aircraft?

Mr. Hall: Yes, it had equipment on board to keep the heart pumping and the lungs working with machines until they got them back here.

By that time, of course, Dr. Cooper and the transplant team had assembled, and by about midnight the donor body arrived. The team was all ready and away we went.

Dr. SerVaas: The body of the donor was a 13-year-old who was killed in an automobile crash?

Mr. Hall: Yes. He was brain dead from the accient. There's a story here, too. Actually, the mother of the boy--her husband was killed in the same accident--must have had some courage to allow her son's body to be taken to Toronto and returned. That is what she did, though. They took the lungs and some of the other organs for transplants and shipped the body back to Montreal.

Dr. SerVaas: Did the woman who also lost her husband give his body for transplant as well?

Mr. Hall: I don't know. Under the Metro Organ Retrieval Program you're not allowed to know the name of the donor.

Dr. SerVaas: What exactly is the program?

Mr. Hall: It's Metro Organ Retrieval Program and Exchange (MORE), and it works in a 1,000-mile radius out of Toronto. They do a fine job.

Dr. SerVaas: As for your new lung, do they know if it will grow to adult size? Was the boy large for his age?

Mr. Hall: They tell me he was. But he apparently died before puberty, so the organ is small in comparison to the transplant that followed mine. I saw a picture of the lung, and it's very large compared to mine. But the doctors don't know if it will grow or whether it may increase in a capacity without growing.

Dr. SerVaas: You are still on cyclosporin?

Mr. Hall: I'll be on cyclosporin forever, I guess.

Dr. SerVaas: But a lot less than at first?

Mr. Hall: I go now every five weeks to a clinic for transplants. They check the cyclosporin level and alter it if it needs altering. I'm on a low dose now, and I've been fairly stable for several months.

Dr. SerVaas: Have you had any bad effects from it?

Mr. Hall: No, I've had no side effects at all.

Dr. SerVaas: And you can breathe without oxygen night and day?

Mr. Hall: As a matter of fact, I just had a blood-gases test done, and they found my oxygen to be in the high 80s, low 90s. It was running in the 40s prior to the operation.

Dr. SerVaas: That makes the difference between comfort and suffocation, doesn't it?

Mr. Hall: Yes, the color used to be black or bluish. Now it is bright red. Looks good.

Dr. SerVaas: Did you have much concern about the down-side risk of the operation?

Mr. Hall: Very much so. Not only Dr. Cooper but everyone on the ten-man team came to me and explained the risks involved. So I knew the chance I was taking, but I was willing to trade quality of life for quantity of life. I just didn't like being fettered to the oxygen. So my options were few. The only other option, in fact, was waiting to see if I lasted eight months or ten months. And in my current condition I found that each time I picked up a cold or the flu, my breathing went down. And after the cold or flu cleared up the breathing never got back to its original condition. I could see in the time remaining to me that I would probably end up lying in bed gasping for breath. And that isn't the way I wanted to go. So the operation for me was the answer. One way or the other, I'd be off oxygen. Thus, it wasn't such a great decision. It was tougher on my family, I suppose, than on me.

Dr. SerVaas: I should think so. Do you have children?

Mr. Hall: We have four children, ages 26 down to 19. My wife and I have been married for 27 years.

Dr. SerVaas: What are your plans for the future? We heard you're helping find donors for the many who need organs and can't get them.

Mr. Hall: Yes, I go out in plazas where they [MORE] set up a booth and try to get people to sign their driver's licenses, because in Canada, of course, donating your organs is all voluntary. A little girl from Canada who got a new liver has gone out with us, along with her parents, to help. Unfortunately, I think the figures show that two-thirds of the people die while waiting for organs. It seems such a shame once they've made that tremendous decision to go for a transplant and then not to get it. If they die during the operation, that's the risk they have to take.

Dr. SerVaas: But if they die without getting a chance. . . .

Mr. Hall: That's the shame. Some of it is probably due, I have to say, to the medical profession. In places where they do transplants, they're not conscious of the need for organs. In some cases where people are brain dead and their organs might be good, it's sometimes less paperwork for the doctor just to let them die normally than to take the extra steps of going to the family and asking if they can have the organs. Then there's the business of keeping the victim alive and doing the necessary work to get the organs to the right people. Anyway doctors think only of kidneys, as if that's the only organ that's transplanted. While I waited for my lung, I don't know how many kidney transplants went on. You have to wonder--if the doctors got the kidneys, why didn't they get a lung? In small towns or hospitals where they're not doing transplants, it's just not on their minds.

Dr. SerVaas: I think publicity will change that.

Mr. Hall: That's what we are trying to do in Toronto-- get the message to as many medical people as possible. Radio and television stations here have been doing some work on it.

Dr. SerVaas: Weren't you on CNN, the cable news network?

Mr. Hall: Yes, and CBS. I've been on a lot of shows for different reasons. This last year I've sort of been the front for the Lung Association here in Toronto. I recently sent out 2,200 personally signed letters to businesses for a fund-raising promotion. And I appeared at the dance that kicked the thing off.

Dr. SerVaas: Can you dance?

Mr. Hall: Oh, yes. We go out most weekends, and the bride and I dance a slow number now and then. For the last two or three years I didn't dance, because I just didn't have enough wind.

Dr. SerVaas: What about sports?

Mr. Hall: No, not yet. I've ridden a bicycle around the block a couple of times, but that's as far as I've gone. I think some of the other things will come in time.

Dr. SerVaas: Could any of your doctors discover what caused your lung problem?

Mr. Hall: No. It was called fibrosing alveolitis. I guess they thought in my case it was a disease in people of my age. But we had a boy of only eight up here from Chicago, and he had it. I really don't know if it proceeds at the same speed in everyone. It was very rapid with me. And the same thing with Monica Assenheimer --it just developed over the last three or four years.

Dr. SerVaas: So it came on you out of the blue?

Mr. Hall: Yes. When I began getting a little short of breath, I put it down to age and overweight. Then it became noticeably worse, and I went to a chest specialist. He diagnosed it as asthma and treated me for that for quite some time. Finally I got so ill that I ended up in the hospital, where it was correctly diagnosed.

Dr. SerVaas: Did they do a biopsy?

Mr. Hass: They did eventually, to confirm their diagnosis. The sound from my lungs was like cellophane rattling.

Dr. SerVaas: Do you have any advice for those who need transplants?

Mr. Hall: It should be done when they are in reasonably good shape. The medical profession has been so fussy about ethics. They don't want to appear that they are transplanting healthy people, so they virtually wait until a person is on the last gasp before they do it. Most lung diseases, like emphysema, don't become serious until one is in his mid-50s. So, it's kind of like being between a rock and a hard place. Doctors don't want to operate on them over 50, but the people who need the operation are mostly all over 50.

Dr. SerVaas: What did you think just before the surgery?

Mr. Hall: I thought I had led a good life, and if worse came to worst I'd go where good people go in the hereafter. Of course, I prayed, and there were many groups praying for me. I'm sure they really helped. I know they helped me personally.

Mrs. Assenheimer is a 36-year-old donor-lung recipient who had been in a wheelchair and on oxygen 24 hours a day. We asked her how she felt. "Oh, great,' she said. "Yesterday I worked a full day in the store. My husband has a hardware store next to our house, and I went over at 9:30 and worked right through until 4:30. No problem at all. I had a ball. Today I'm doing the laundry, and I was out showing my brother-in-law around town. I've been doing a lot of other things, and I haven't been the least bit tired. So I would say I am almost 99 percent back to normal. I can breathe without oxygen. Before the transplant, about three-fourths of my lungs were affected by my pulmonary fibrosis. The lungs were almost dormant. The volume of air I was taking in was about threefourths of a liter. Now my lung volume has increased to about two liters. And with added activity I will be able to increase it probably by another liter.'

Dr. SerVaas: What about the blood gases when you were so sick?

Mrs. Assenheimer: Oh, they were lousy. I was retaining an unbelievable percentage of carbon dioxide, and this was worrying the doctors. It was why they assessed my length of time to live at six months at the most. That really shocked me, because when I originally was told to begin thinking about a transplant, they said I might have another couple of years. It was really devastating. It's hard to explain. plain. But it just felt like the bottom --like the rug was being pulled out from under my feet. You know what I mean?

Dr. SerVaas: It changes your priorities rather quickly, I would think.

Mrs. Assenheimer: Wow, does it ever! So really, deciding on the operation left no choice. I was so afraid because I knew all the pain and suffering and the chance that it might not turn out all right. So I was sort of pinned to the wall. But there was no time that I ever thought forget it, I won't go fot it, I'll just let myself die gradually. That never once entered my head. I knew I had to go through with it. A lot of people prayed, and I'm sure that helped. I'm positive.

Dr. SerVaas: After you said yes, how long did you have to wait in suspense for a donor lung?

Mrs. Assenheimer: One month. I had set my sights on two months because they said the average waiting period was two or three months. They asked me if I would like to wait at home or go down to West Park Hospital in Toronto, a rehabilitation center. But we live quite far from Toronto.

Dr. SerVaas: Did you have a beeper so they could get you right away?

Mrs. Assenheimer: Yes, I had a beeper. But still I didn't want to be this far away. The snow sometimes is very bad, and I didn't want to take the chance. There were enough obstacles to overcome already. And it would have made me very nervous driving to Lindsay to get an air-transport plane, and then wonder whether it could land if there was a blizzard or if I never could have gone at all. So I would have missed out on a lung.

Dr. SerVaas: So you went, and put up in a hotel?

Mrs. Assenheimer: West Park Hospital, a very nice place to stay. It's not like a hospital at all--more like a hotel. And when I was there I concentrated on making friends. Some of the people were a lot worse off than I was. I found getting involved with them made it a lot easier for me to wait.

Dr. SerVaas: Your success will encourage more people to donate organs. Certainly more organs will mean more transplants, and with more transplants, more expertise will develop. Doctors learn more every time they do one.

Mrs. Assenheimer: Did you know that since Tom Hall's transplant they have cut the surgery time almost in half? Tom's took ten hours, and mine only took six. That was remarkable too.

Dr. SerVaas: I'm sure your husband and children are thrilled.

Mrs. Assenheimer: Oh, yes. I feel better every day, although I'd be satisfied to stay the way I am right now.

Dr. SerVaas: You are on cyclosporin?

Mrs. Assenheimer: Cyclosporin and prednisone, which is a kind of cortisone, I believe. But they have decreased the prednisone by quite a bit already. I started out on 30 mg a day and now I'm down to 15 mg.

Dr. SerVaas: Thanks for sharing your story. I'm sure it will inspire others facing circumstances like yours.

Photo: Tom Hall now spends his spare time with the Toronto Lung Association and acquaints the public with the desperate need for organ donors. He believes that others should have a chance for the new life that Dr. Joel Cooper gave him.

Photo: Monica Assenheimer had been on oxygen for two years and in a wheelchair for a year. Before her lung transplant, she was given six months to live--pretty serious business for an unexpected disease that started with shortness of breath.

Photo: Tom Hall's visits to the hospital after his recovery did much to keep Monica's morale high. Their families became close friends as they shared their emotional crises.

Photo: A metal Quonset hut prevents the Pulmo-Wrap from collapsing on the patient's chest during suction. Several ingenious researchers, including Dr. Henry Himlich, are at work trying to devise a miniature artificial lung that could serve those with failing respiratory systems.

Photo: A patient is encased in the Pulmo-Wrap, or "sheet ventilator.' Working on the principle of the vacuum sweeper, a motor for this sleeping-bag device creates negative pressure and assists some individuals suffering from neuromuscular as well as obstructive pulmonary dysfunction (pulmonary fibrosis, emphysema, etc.).

Photo: Tom Hall and Barbara, his bride of 27 years, know the happiness of going from the doctor's death sentence a few months earlier to weekends when they can again go dancing. "Just to slow stuff for now,' says Tom, who is also able to ride a bicycle around the block.

Photo: Tom Hall, with son, Don, 23 (the Halls also have two daughters), in a light-hearted mood with the ICU staff at the Toronto General Hospital, where Tom was given a second life.

Photo: "I have always wanted to do something for mankind,' Monica tells Tom. "I think maybe the Lord put me through this crucible to refine me for the task of encouraging others in my desperate situation. It makes me feel good to do something for others.'

Photo: Three cheers for mom. Sheri, 19, and Roger, 14, share their dad's excitement over the "new mom.' Now she feels 99 percent recovered, works all day and is having a ball. The family moved several years ago from Toronto to a country village of 1,600, where they hoped the fresh air would help Monica's handicapped lungs. After her surgery, Monica's biggest discomfort comes when she goes to Toronto every week and stays in the home of a relative who smokes.
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Title Annotation:interviews with Tom Hall and Monica Assenheimer
Author:SerVaas, Cory
Publication:Saturday Evening Post
Article Type:Interview
Date:May 1, 1985
Previous Article:Let's hear it for lungs.
Next Article:Nevis: queen of the Leewards.

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