At 75, Chris Lundy is one of the longest living recipients of a bone marrow transplant. 

He was among the patients included in the 1975 paper published in the New England Journal of Medicine titled “Bone-Marrow Transplantation.” 

“It was a paper everyone interested in bone marrow transplantation read word for word,” Frederick Appelbaum, executive vice president, professor in the Clinical Research Division, and Metcalfe Family/Frederick Appelbaum Endowed Chair in Cancer Research at Fred Hutchinson Cancer Center, wrote in his book “Living Medicine.” “It was the article that introduced marrow transplantation to the general medical community.”

An interview and podcast with Appelbaum about his book “Living Medicine,” is available on the Cancer History Project. 

Lundy’s path to diagnosis and treatment was not simple. At age 18, during basic training in Fort Polk, LA, Lundy slipped and broke his wrist. 

At the hospital, the doctors set his wrist and ran some blood tests. What Lundy thought would be a simple visit turned into an eight-month stay.

“What they found was that I had an extremely low hematocrit,” Lundy said to Deborah Doroshow, assistant professor of medicine, hematology, and medical oncology at the Tisch Cancer Institute, Icahn School of Medicine at Mount Sinai. “I was jaundiced, I had double walking pneumonia, and I was a pretty sick puppy. And if I hadn’t broken my wrist and gone to the hospital, I probably wouldn’t have been around too much longer—because I think my hematocrit was about four and a half or five, and normal was supposed to be up around 15.”

Doroshow, who is also a historian of medicine, is a member of the editorial board of the Cancer History Project.

Doctors at the hospital in Fort Polk thought Lundy had a reactionary hemolytic anemia, but it took them a while to settle on an initial diagnosis. They conducted several bone marrow biopsies, took blood for testing, and began treating Lundy with prednisone—the hope being that this might jumpstart his red blood cell count. Nothing seemed to work. 

“I felt like a big pin cushion,” Lundy said.  

After eight months, they transferred him to a hospital in Fort Sam Houston, TX. There, doctors determined that Lundy had paroxysmal nocturnal hemoglobinuria.  

“In the medical books, there were literally about four sentences after the name, and that’s about all they had,” he said. “I was, like, the 800th recorded case of someone having this.” 

The suspected cause? 

In Fort Polk, recruits going through basic training were moved out to the football field and put in tents. The tents were sprayed with insecticide. 

“I had been sprayed with insecticide, and the insecticide had stopped me from making blood,” Lundy said. 

Lundy spent 38 months in the hospital. During that time, he contracted pneumonia 34 or 35 times. 

“You can have a sniffle, and I would get pneumonia,” he said. 

Due to his weakened immune system, Lundy wasn’t allowed many visitors, and spent a lot of time on his own. 

“Now if someone is in a room, you have some different things that you can entertain yourself with—like radio, tv, etc. I didn’t have any of those things,” he said. “I got a paint-by-number set. I got a couple of coloring books. I got a couple of paperback books from the cart that went around, but anything that came in the room had to stay in the room. 

“And anything that came in the room had to be treated, or radiated before it came into the room so that it didn’t bring bugs with me, or with it.”   

In Fort Sam Houston, Lundy’s doctors exhausted his treatment options, recommending that he go to Fred Hutch Cancer Center in Seattle. 

“It turned out to be a good thing because that’s where I met Dr. [E. Donnall Thomas, who later was in charge of doing the transplant,” Lundy said. Thomas would share the Nobel Prize in Physiology or Medicine in 1990 for discoveries concerning organ and cell transplantation in the treatment of human disease.

In Seattle, Lundy enrolled in junior college, began living in his own apartment, and continued to have his blood evaluated. 

“We did a quick routine that kind of jolted the system, and my system responded, and it started making blood cells again, and things were looking very rosy,” he said.  

Lundy’s doctors gave him the OK to embark on a project—he began to build a fiberglass hatch to make an aquarium.  

“Two days later, I’m doing this application, within 24 hours, my blood counts plummeted,” he said. “It went like a vertical drop, and I felt terrible…That was the beginning of the worst times, if you will, because I never really recovered from that incident.” 

As Lundy’s blood counts dropped, his  doctors had been looking at the possibility of a bone marrow transplant. The procedure was new, dangerous, and uncertain. 

The following year was marked by frequent hospital stays and illness—at one point running a fever of 106 for about a week. At one point not long before the transplant, Lundy was confined to his hospital bed 24/7. 

One day in 1971—five years after Lundy’s initial diagnosis—a doctor came into his hospital room, offering him good news and bad news. 

The good news?  

“‘We’ve decided that we’re going to try and do the bone marrow if you want to,’” the doctor told Lundy. “‘The estimate is that you probably only have a 10% chance of pulling through it.’” 

The bad news? Lundy only had a week to live if he decided not to go through with the bone marrow transplant. 

“At that point, the world felt really heavy,” Lundy said.   

The doctors HLA-typed Lundy’s family and determined that his brother, Jerry Lundy, was a match. Jerry agreed to be a donor and Chris decided to go through with the transplant.

“I was fine. No graft versus host disease, no hiccups or bumps in the road. I just sailed right through it in terms of all the things they thought could happen, might happen, and none of that did,” he said. 

Jerry, however, experienced complications—while doctors and nurses took blood from Jerry, he went into cardiac arrest. The medication they had given him for the procedure, protamine, was determined to be the cause. 

“It happened three days in a row, the same thing,” Jerry Lundy said. “First day they shot it all in and I went into cardiac arrest. And then the next day they spread it out over a period of time, and I still went into cardiac arrest. And the third day they did the same thing, and did it again.”  

After the third time, doctors released Jerry Lundy without giving him the coagulant. 

“[They] just let me go with my blood thin,” he said. “I couldn’t shave, couldn’t go nowhere. I couldn’t do nothing that I would take a chance on cutting myself, because I would’ve bled out.”  

Complications aside—the transplant was a success. In 1972, Lundy returned to school. He went on to have a career as a middle and high school teacher. 

“For the most part, I’ve always felt like it was a part of my life,” Lundy said. “Because I was number 29 to have the transplant, it turns out, as the years go by, I am longer-living.” 

Chris and Jerry Lundy spoke with Deborah Doroshow. The conversation is available above, on the Cancer History Project podcast.

Transcript

Deborah Doroshow: I’m wondering if we can just get started by hearing a little bit about who you both are.

Chris Lundy: Why don’t you go ahead, Jerry.

Jerry Lundy: Jerry Lundy, of Conway, SC. I have lived here my whole life. I have worked on a farm, drove a truck, and operated equipment. There’s really nothing outstanding in my life. I have enjoyed life, hunting, fishing, boating—really don’t think there’s anything special about my life that would stand out.

Well, I think all of that is terribly interesting. I don’t know many farmers. I’m wondering what you farm?

JL: Tobacco, soybeans, corn. We had a couple acre garden growing up, so there was always something to do in the garden. We had hogs and cows and chickens and depended upon the farm for most everything we had.

And you both grew up there in South Carolina?

JL: Yes, ma’am.

Fantastic. Do you have any other siblings?

JL: I have an older sister. Her name’s Dessie. She’s 80 years old. Actually, she’s been really sick in the hospitals and nursing homes and all. But anyway, she’s in the nursing home where mama and daddy both died. Now, my sister’s there.

Thanks so much for telling us, Jerry. Chris, do you want to tell us a little bit about who you are?

CL: Well, my name’s Chris Lindy, and as Jerry indicated, we grew up on the farm. When I was 17, I left the farm to go away to school. And that was in August. In November-ish, they had the first draft. And long story short, my number came up two.

What year was that, Chris?

CL: This was 1966. So my number comes up two. That meant that you definitely were going to be going in the draft and I thought, first, of going in the Marine Corps—and we had a cousin that was in the Marine Corps and came back from his first tour about the time that I got home to start getting prepared to leave and do something.

And he talked me out of going into the Marine Corps because of what was going on in Southeast Asia, and to pick a better choice if I could. And so I went and interviewed with the different branches and I scored very, very high on the ASVAB and everyone was telling me that I could do anything I wanted. And I thought, well, I’d really like to fly. And so the only rub was that I couldn’t fly unless I had a four year degree.

And all of the services except the army were taking individuals such as myself that did not have a college degree, and making them warrant officers and training them to fly helicopters. They needed lots of helicopter pilots at the time. That directed my path and I ended up joining the army.

I got one slot that was available out of several hundred that were in the pool that had been qualified. We get basic training in Fort Polk, Louisiana. And there was a training incident that happened later on when we were playing with some green beret types doing calisthenics, competing with them. I ended up slipping and falling and breaking my wrist.

I go to the hospital to have my wrist set, and I’m told that I have the wrist set and I’ll go back to my unit in a day or two when the swelling goes down. Going into the hospital, they did some tests.

It was normal protocol, but what they found was that I had an extremely low hematocrit. I was jaundiced, I had double walking pneumonia, and I was a pretty sick puppy. And if I hadn’t broken my wrist and gone to the hospital, I probably wouldn’t have been around too much longer—because I think my hematocrit was about four and a half or five, and normal was supposed to be up around 15.

Were you feeling poorly at the time?

CL: Tired, stressed, all of that stuff—because we were in a cycle where we were getting four or five hours sleep, a night, heavy exercise and all that kind of stuff. Tired, yes. Other than that, I was in really good shape, so I guess it didn’t affect me like it could have or should have. But other than being kind of tired and sleepy, no, not really.

What happened next?

CL: Instead of going back to my unit, I was taken down the hallway to another hallway, and down that hallway to this room, and put in the room. And it was several hours later that different people started coming around, and they started doing things outside the door, and they put up this yellow and purple tape around the door.

One of the first things that did happen is someone came in and they took, like, 40 tubes of blood. I’m in this room that I was in for the next six-and-a-half months without being able to walk out the door.

At the time they came up with a diagnosis—it was changed a couple of times in the process of being at Fort Polk, and they did all they could do for me, but they determined that I had some flavor of a reactionary hemolytic anemia, and I should be sent to Fort Sam Houston. That’s where I went after about eight months of being in my little room.

When you were in your little room, were they doing anything to try to treat this problem?

CL: I felt like a big pin cushion. They did a couple of bone marrow biopsies, they took a lot of blood, and they did some different therapies. One of the ones I remember was taking a prednisone. The idea was to help jump-start making the blood again. I wasn’t making any red blood cells. What happened, I ended up getting fat cheeks and being hungry all the time.

The rest of it was kind of a blur in terms of treatment because it seemed to be something different. Every week they would have someone else come in, and I saw a large number of doctors with different ideas on what I had.

Later, I found out at the time, that what I had was they determined later at Fort Sam Houston, that I had paroxysmal nocturnal hemoglobinuria. In the medical books there was literally about four sentences after the name, and that’s about all they had. I was the like the 800th recorded case of someone having this.

What did they say to you to explain what this condition was and what it meant?

CL: I had been sprayed with insecticide, and the insecticide had stopped me from making blood.

When were you exposed to insecticide?

CL: During the training. This was springtime in Fort Polk, LA. We were moved out to a football field and put in tents and they sprayed around the tents and also in the tents for the mosquitoes. The mosquitoes were very big and the joke was that two of them could carry away small children. And you went away.

And Chris, how did you feel about all of this that was going on? Your life had been turned upside-down.

CL: I don’t think I had enough time to really figure out what effect it had other than I’m in this room, and now if someone is in a room, you have some different things that you can entertain yourself with—like radio, tv, etc. I didn’t have any of those things. I got a paint-by-number set. I got a couple of coloring books.

I got a couple of paperback books from the cart that went around, but anything that came in the room had to stay in the room. And anything that came in the room had to be treated, or radiated before it came into the room so that it didn’t bring bugs with me, or with it.

During my stay in the hospital during the whole period of time, I was in the hospital 38 months, and I ended up having pneumonia, I think, 34, 35 times. You can have a sniffle, and I would get pneumonia.

Were you able to talk to your family while you were stuck in that room?

CL: Not very easily, because there were no phones in the room. There was a payphone that, in order to use it, I had to impose or get someone to do me a favor and get me coins to use the payphone. And for a very long time, I didn’t have money to do that because I went in the room and things were kind of frozen. I was in limbo.

Isolation was an interesting experience for someone that is social, and likes people, and likes to talk. My talking was really limited to the corpsman that came by, and the nurses, to a much lesser extent, the doctors. They came in, they were busy, they didn’t have an hour to sit and talk. And later on I spent time talking to a chaplain who would come by once in a while, but it was weird. It was just a weird experience.

Jerry, if you can think back to when this was all happening, what were you and the other members of your family aware of at this time?

JL: Not a whole lot, because, like he was talking about, the phones are not like they are today. We had just gotten a phone at the house. We didn’t receive many phone calls. There was no communication. The only time we’d ever hear from him would be when he got out and got a call, and we talked a few minutes and that was it. But no, we didn’t have the text, email, phone in your hand all the time like you do. We’re talking about the late sixties.

Were you guys worried, or just not sure what was happening? What kinds of emotions were happening at home while Chris was stuck in this room?

JL: Worried, not sure what was happening, praying a lot in that situation. We just didn’t know. Nobody had heard of this disease that he had, why he was in isolation, why we couldn’t bring him to a hospital in South Carolina where we could go see him. Whenever he left Texas, they sent him to Seattle, and that was even farther away. When they first called us, he was in Fort Polk.

We went down there to see him for a few days and then they told us we had to leave. He was in isolation. I mean, we couldn’t see him, couldn’t talk to him, couldn’t really communicate with him. We just left and came back home.

Well, Chris, you were about to tell me about leaving Fort Polk.

CL: When I left Fort Polk, I went to Fort Sam Houston, and one of the doctors that I lucked into getting there had gone through the University of Washington system. He was a senior doctor, he had a rank of colonel at the time. I got there and by the time I left, he was promoted to a one-star general. He had a little bit of horsepower by being able to assist me in getting places and getting introductions to people.

When they had done all they could do for me there, he recommended that I go to Seattle, and he had contacts in Seattle who he called and told them I was coming. It turned out to be a good thing because that’s where I met Dr. Thomas, who later was in charge of doing the transplant.

You probably know more about it than maybe some of the others, but another doctor whose care I went under because I was in the military was Robert Evans, and he was chief of medicine at the VA Center in Seattle. He was also, they said, the top one or two in the world in reactionary hemolytic anemias.

He was a professor and worked with Dr. Thomas and Dr. Goldfinch at the university, and it all kind of just slowly melded together with the different tests and stuff that they were doing.

When you arrived in Seattle, did they still think you had paroxysmal nocturnal hemoglobin?

CL: Yes. One of the first things I had to do before I could leave the hospital was to rehearse and regurgitate basically everything about PNH and the reactionary hemolytic anemias so that if something happened and I was outside of the bubble, that I would be able to educate whoever was treating me as to what was needed required, and what I needed to do now, and who needed to be called.

I had home phone numbers and direct lines and all that kind of stuff to Dr. Evans. I don’t remember if I did for Dr. Thomas or not, but there were a couple of those types of people that I had a direct line to in case anything happened, and could call them day or night kind of thing.

How did you get to Seattle from Texas?

CL: I flew on an airplane. I went home to see the folks for a couple of weeks I guess, and then I went from Seattle, or went from South Carolina to Seattle.

Did they make you do anything special on the airplane since you had been in isolation, or nothing in particular?

CL: No, not that I remember anything special.

And you got to Seattle, were you at the VA hospital there?

CL: Yes.

What happened next?

CL: I started running tests, and I started being evaluated, and I got to a level where they thought it was safe for me to go outside, if you will, and I ended up getting a little apartment to get on with life.

I enrolled in a junior college and started taking classes and I just had to be careful what I was doing. I sat at the back of the room, or away from the door, or watched how I was mingling with people. Did a lot of washing my hands, and all that kind of stuff.

At one point there were instances where even back in the day I wore masks, which was, it was interesting, with the past COVID stuff that we’ve gone through to flashback, and remember how people reacted when almost no one wore a mask—and here I am walking around with a mask on and they wanted to know what was wrong.

I had lots of interesting experiences with people who were just curious, and would come up and ask questions, “Are you okay? Do you feel alright? You don’t look so good, maybe you should go see a doctor.”

What was that like?

CL: I learned to take it with a sense of humor, be gracious about it, thank them for being concerned. I also learned to modify what I was telling people because some were really interested when they asked the question, and they were interested in the information, or the story that you were telling them, and others asked the question, and they really didn’t want to know the answer or they didn’t know how to handle the information once you started telling them.

And you could see the facial characteristics and stuff change, the body language change. So I learned how to read the room, and if I didn’t think they could handle the information, then I would abbreviate it or change it a little bit so that I didn’t totally scare them away.

I imagine that your friends in Seattle knew about your health issues.

CL: Yes. I started out having quite a few, I made quite a few friends, but as time went on, and I started spending more and more time in the hospital, I found out that there’s a difference between having an acquaintance and having a friend. And I probably ended up with three really good friends and 50 acquaintances.

It does sound though that there was a core group of people that really stuck by you.

CL: Yeah, there was. It was OK that something was going on and they were glad to listen if I wanted to talk about it, but they were not super nosy and had to talk about it every time they saw me. It became a natural thing instead of an inquisition, where with some people, it felt like it was an inquisition.

I imagine at this point you were able to at least talk to your family a little bit more?

CL: Yes, I did create some expensive phone calls. I was calling, particularly, my mother, who was kind of the main person that I talked to when I called, because she was there by the phone most of the time.

And I would try, at other times, to call when I knew that my dad might be around, or my brother might be around, and I would talk to mom first and then I would talk to them a little bit. But back in the day, it was not unusual to have a phone bill of a couple hundred dollars,

Which was a lot of money at the time—more than it is today.

CL: I didn’t have a lot of other expenses. It was good to hear their voices. It was good to hear their input. And even if they couldn’t do anything about it, well just to know that they were there and thinking about you.

What happened next?

CL: Well, different things with the testing and stuff happened. I ended up starting to improve. I got up to where I was running hematocrits of 11, 12, and at one point we did a quick routine that was done that kind of jolted the system, and my system responded, and it started making blood cells again, and things were looking very rosy.

Do you remember what that treatment was?

CL: No, not really.

The good news, bad news was I started improving and feeling better, and I had taken time off from school, because I wasn’t feeling well. This happened, and I started feeling better. I’m getting antsy and wanting to do something, and we were looking around for a project I could do and I wanted to do a fiberglass hatch cover to make an aquarium. And I thought that would be great as a Christmas present.

I started doing that, and the weather turned, and where I had to do this was an open area under my father-in-law’s house. You could open the basement up and get lots of air flow through there. It was protected. I wasn’t getting wet, and I did this and I even bought masks and all that kind of stuff because the smell was not very nice. From the day that I did the first application of this, I had the blood test before, it was positive. I got the OK to do this. Two days later I’m doing this application.

Within 24 hours, my blood counts plummeted. It went like a vertical drop, and I felt terrible. Dr. Evans said that one was on him. He didn’t see that coming, and just totally missed thinking about some of this.

That was the beginning of the worst times, if you will, because I never really recovered from that incident. I kind of creeped up a little bit, but they had been looking at the possibility of this bone marrow transplant, but it was out in the future, and they were working on some of the details of getting it done. By the time this happened, it was a lot closer, and it was probably close to a year before it actually came to fruition that I had the bone marrow transplant from this incident.

Did you end up back in the hospital for a long time?

CL: Yeah. I went back in the hospital, and I was in and out for—I would go in on a Monday morning and get a blood test, and usually got a top off, I called it, I would get a unit of blood, and then would go to Friday and have it checked again, and may or may not get another unit to get through it.

I went from doing that, to being in the hospital, and getting up to where I had the bone marrow transplant. Things had been going downhill and I ended up getting an infection and had a really rough time, high temperature. I ran a temperature of like 106 for seven days, and I tried different things and nothing seemed to be working.

I was taking morphine injections, and one of the things that is significant to me is that I had been in bed and I had the temperature, and they were doing all the things they could to make me comfortable. I’m on the bed and when they made the bed, they didn’t put the call button back where I could reach it. They had forgotten and put it on the wall.

I called out and no one heard me. After calling a number of times I thought, well, I’ll just get up and get it myself. I got up, got out of the bed, and the call button was four steps away. In the process of going that four steps, I ended up basically fainting or doing something.

But at the time this is going on, I have this 107 degree temperature, and I was hot, and I went into this shivering, almost a convulsive kind of state. I couldn’t control things. Along the way, both from being a kid growing up and talking with different chaplains and stuff, I had picked out stories of different people from the Bible that I had read about and tried to understand more in reading through the different material. One of them was Joe, and how he had gone through all these trials, and lost everything, and God told him that he would never give him more than he could handle.

That is a microphone in my head. God will not give you more than you can handle. I remember very clearly talking to God and saying, OK, I understand you wouldn’t give me more than I could handle, but I’m telling you I’m done. I can’t handle it anymore.

This is like three o’clock in the morning, and I end up, I guess, passing out.

The next thing I remember, it is 7:30 in the morning, and at about five o’clock they came in to give me meds, took my temperature and the temperature had gone from 107 down to 105. Then, by 6:30, I think it had gone down to 103. And by rounds at 7:30, 8 o’clock-ish, it had gone down to 99.

They came back and checked at about 9:30, 10, and the temperature was down to normal and they let me go home. They gave me a pass to go out. That was this interesting thing that happened along the way. No way to explain it, but it happened.

But it was a preview to something that happened a while later, when I had been sick again, and things had been going downhill, and I pretty much was in the bed 24/7 and testing had been done, and they were debating on doing the bone marrow transplant. The doctor at the VA who was immediately taking care of me, under Dr. Evans’s supervision—he comes in and he’s a good looking guy, all business, no fooling around, just a very kind of New York personality.

He comes in and he starts talking about cars, and girls, and dating, and skiing, all things that I had tried to establish some kind of rapport with him about before, because he wasn’t that much older than I was. He was like 30 years old.

He had been polite but refocused the conversation, or redirected the conversation, to business. This time he is talking about all this other stuff—and he actually is sitting down, and he picked up one of magazines that one of the ladies had dropped off with cars or something, and he’s looking at it, he’s turning it around and showing me the picture of the car.

I said, “I am enjoying having this conversation with you, Dr. Parker, but what’s up?” He said, “What are you talking about?” I said, “Well, this is out of character for you, and it’s kind of like you want to tell me something or ask me something, but you’re not quite sure how to do it.”

He gets this kind of sheepish grin on his face and he says, “Well, I do.” And I said, “Well, let’s have it.” And he said, “It’s kind of like a good news/bad news scenario.”

I said, “OK, you pick. We only have two. You pick, you go.” He said, “Well, your meds, your counts, everything is going down, and it doesn’t seem like you’re getting much better. So we’ve decided that we’re going to try and do the bone marrow, if you want to.”

I said, “OK, well, that’s good news; right?”

He says, “Well, yeah, kind of.” I said, “What’s not good about it?” 

He said, “The estimate is that you probably only have a 10% chance of pulling through it.” 

I said, “Jesus, if that’s the good news, what’s the bad news?”

He said, “If you decide not to take the bone marrow transplant, you’ve got a week to live.”

At that point, the world felt really heavy, and he goes off, and that was late morning, early afternoon. A friend who was a chaplain came about 5 p.m., and he ended up staying with me and talking. We talked probably until 10, 11 o’clock at night. It was well past visiting hours, and he was still there.

Before he left, we prayed together. When he left, I felt like I still had these thousand pounds on my shoulders, just like I was being pushed into the ground. And so, I go to sleep, and when I woke up the next morning, I felt refreshed.

I felt up, I felt positive, I felt good. Later that morning I went over to Hutchinson to see Dr. Storb, and he’s going through giving me the bad news kind of stuff of what possibly could happen, and what I needed to look forward to, and consider and all of that kind of talk.

He looked like he had bags under his eyes, more like suitcases maybe. And we had gotten to be on kind of a personal level over the time I’d been going over there. I looked at him and I said, “You look like you could use a good night’s sleep.” And he said, “Yeah, probably could. I’ve been doing X, Y, and Z, and we’re got all these different things going on.”

And I said, “Will you do me a favor?” And he said, “If I can, sure.” And I said, “I would like you to go home and get a good night’s sleep and not worry about me because I’m going to be fine.”

The dog bobble head, the kind of thing that you see in cars sometimes, and they kind of turned their head to the side—he did that to me standing there in the hallway. When I said that, he kind of turned his head to the side.

I said, “Yeah, I’d like you to go get a good night’s sleep. I’m going to be fine.” He sort of shakes his head and he goes off down the hallway. As it turned out, I had the bone marrow transplant, and there were different things that happened to my brother, but I was fine.

No graft versus host disease, no hiccups or bumps in the road. I just sailed right through it in terms of all the things they thought could happen, might happen, and none of that did.

Jerry, I think your part is really coming up now. When did you first hear you might have something to do with this?

JL: They called me and asked me if I’d be willing to give him a transplant, and I told them that I would.

Did you know what a transplant was at the time? They weren’t super common.

JL: I did not. But I went to Conway Hospital, and they took some blood and sent it to see if I was compatible with him, and they found out that I was the only one that could be a donor. They flew me to Seattle in the summer of ’71.

I stayed out there until Christmas doing tests, taking tests, and I don’t remember all the dates, but I remember I was home by Christmas ’71.

Can you tell me about what it was like when they actually harvested the bone marrow from you?

JL: I really couldn’t tell anything different. I was sore the next day—well I’ve been in Car wrecks, and fell, and that kind of stuff, just kind of sore. I really couldn’t tell any adverse effects.

CL: One of the things that did happen is that he gave the bone marrow. Then a couple of days later he started going in, and he would lay on this table and they would literally collect more of the red blood cells. All of his blood was filtered. They would get, like a pint a day or something, or some amount that they would then give me to help mine along, kind of like priming the pump.

Got it.

[sba]CL: On one of these days, something happened where he was supposed to have the shit washed out, if you will, and then I forget what the drug was, but it was to be injected into the shunt over a 15 minute period at a time.

Something happened, and the nurse did it all at one time, and he went into cardiac arrest. They’re doing this code blue thing, and I’m in room X, and it’s a half dozen doors down the way.[/sba]

They were far enough away that I couldn’t tell exactly what was going on, but I see a lot of familiar faces going in that direction—and I know what’s in that room that they’re going in and out of, and that my brother, I think, is still in there. That was an extremely weird scenario.

Wow. When did you find out that he was OK and learn about what had happened?

CL: I found out he was okay hours later. It was probably a full day—not the next day, but the following day, he felt good enough to come in and physically say hello.

Jerry, that sounds really scary.

JL: Yeah. It happened three days in a row, the same thing. First day they shot it all in and I went into cardiac arrest. And then the next day they spread it out over a period of time, and I still went into cardiac arrest. And the third day they did the same thing, and did it again.

Finally, they just quit giving me that drug, and just let me go with my blood thin. I couldn’t shave, couldn’t go nowhere. I couldn’t do nothing, that I would take a chance on cutting myself, because I would’ve bled out.

I can’t remember the name now, if it was protamine or heparin, whichever one it was. One of them was given to thin the blood to go through the machine, and then the other one was given to thicken it back up to where I wouldn’t bleed out if something would’ve happened to me. But anyway, they’d done it three days in a row.

Did you guys at the time feel like this was something that the team did all the time, or did it still feel like something that was relatively new?

JL: It was my understanding that it was relatively new. Chris was one of the early ones.

CL: I was number 29.

JL: They had done it a few times in Germany, but they hadn’t done very many in the United States.

How were your parents handling all of this?

JL: Mom came out there for a while, and daddy had come for a while, just in a week or so, but they’d done all right, considering everything.

By the time that I had got on the machine and was having trouble with the medicine, ma had gone back home, so she didn’t find out about none of that. She was at home and we were calling, I don’t know, I certainly wouldn’t say every day, but we were calling occasionally to let her know we were all right, everything was all right.

Chris was married at the time, but I was not. I called a girlfriend, which later became my first wife. I called her occasionally and talked to her, and then she’d call ma, and tell her that we was all right. I wouldn’t say we called home every day, but we called home several times a week.

And Chris, it sounds like the actual transplant went pretty smoothly for you.

JL: It did. The actual transplant went smoothly for me. Like I said, it was no big deal for me. I mean, I was just a donor. I didn’t do anything.

CL: It went smoothly for me. Also, one of the big things at the time was graft versus host disease, and I did not get that. My different blood counts and stuff started going up, my resistance to things started building. But over the period of time after that, I ended up having all the childhood diseases again. I had mumps, measles, and chicken pox.

There was one period of time when my son was in, I think it was first grade, second grade, he goes off to school, and he came home with chickenpox. And by the time I got him healthy to return to school, I came down with chickenpox.

We went through that cycle so that I had chickenpox, two flavors of measles and of mumps. The neighbors would bring me groceries and put them on the doorstep. I’m inside with the kid, and we were in there together. And when he got better, he would go to school.

We had a time, but I ended up doing OK, other than I had to be careful. Like going to the store, I would go first thing in the morning when they first opened. I went to gas stations where they pumped the gas for you instead of going out.

Was there a time when you found that you didn’t need to modify your activities as much?

CL: It was more gradual. I had the transplant in November. I stayed out of school until summer school. I went back to summer school in ’72. In doing that, it was being aware of what was going on, and not, if I saw someone with a runny nose, I’d give him a wide berth, or that kind of stuff. I can’t think of anything special at the moment that I was doing or not doing.

Was there a time when you kind of felt like—Wow, I’ve moved past this—or has it always felt like it’s been still affecting your life, or been a part of you?

CL: For the most part, I’ve always felt like it was a part of my life. Because I was number 29 to have the transplant, it turns out, as the years go by, I am longer-living. I wasn’t supposed to be able to have kids. When I had one before I had the transplant. When I was taking the drugs, I was told to be aware that there was a pretty good chance that if I was able to impregnate someone, that the kid would have birth defects because of all the drugs. You move forward with all of this.

Did you end up having more children?

CL: Two more.

And what kind of career did you pursue?

CL: Well, I got a BA in speech and psychology from Seattle Pacific with a minor in drama and economics.

I came to San Diego to go to graduate school in psychology because when I was in Seattle, I met some pretty interesting people, and they convinced me that I probably would enjoy coming to San Diego and going to USIU (United States International University) and taking classes from them.

I did seminars with Elisabeth Kübler-Ross. I had classes from Carl Rogers, Viktor Frankl, Al Greenberg. I could name drop some more, but it was an interesting time.

Having said all of that, I was planning on going and working with death and dying families—significant trauma. When I had been starting my career in coming down here, I got part of it paid for by the VA, and I got far enough along that I was paying for my education out of pocket, and I didn’t need to have a student loan.

I saw that lots of people were taking student loans, and at the time, they were literally trying to stuff money in your pocket. I decided to come south and do psychology.

Instead of going to medical school, Dr. Evans championed me going to medical school in oncology/hematology, because one of the cool things I did was I was at the final exam for the residents at the University of Washington for a couple years, and he would introduce me, and then I got to sit on this table in front of the room, and you got this room full of white coats. We sat there and had a conversation for an hour.

I’m looking at, by the time I did all of that, if I was lucky, I would be like 44, 45 years old. I was impatient, and I wanted to do it quicker, and I thought that getting the psychology degree would be quicker. That’s the route I took.

Then, my first wife passed away, and I had a kid who was three and a half years old. Long story short, I decided to stop and raise him instead of continuing on with graduate school. And from that, one of the first things, one of the first jobs that I got was an assistant administrator in a psychiatric hospital.

Then that led to getting a vice president position at a construction company. That led to real estate development, commercial real estate, that led to doing some consulting. Then I got irritated with how things were going with the education in California, and I complained about it a lot. I did some work with different politicians on changing things that weren’t working like I wanted it to, and fast enough. My oldest son challenged me to make a difference myself.

Long story short, I ended up leaving private business and went back to school and got a job teaching, and well, for 18 years, I was a middle, high school teacher.

Fantastic. What did you teach?

CL: Well, I was contracted to teach English, and I taught second language students how to read and write.

Then I really wanted to teach drama or history, and neither one of those happened to be in the cards. I did have enough background with the economic stuff that I taught business, and when I was not under contract, I did long-term sub positions. Instead of doing it one day, this classroom next day, a different classroom, I got into going in and taking over for you when you were out on a surgical leave or maternity leave, or you had an accident or something like that. I was in the classroom with the same kids for weeks at a time instead of days at a time.

Fantastic. Chris, I’m wondering, these days, how does your experience with being ill affect you? Do you still take medications related to the transplant?

CL: Yes. I have continued to follow and participate in surveys and stuff that they do. Once a year I go through and answer questionnaires, and have the doctors I’m seeing respond to different questions that Hutchinson has.

Well, there are things that are still in play. As an example, I have Type 2 diabetes, and came to find out that about 37% of people that go through a bone marrow transplant get Type 2 diabetes. I’m still sensitive to certain smells.

You could have ants in your house and spray Black lag, if you will, and I could come in three or four days later, and within five minutes of being in your house, feel like you were beating me in the temples with hammers. Paint, oil-based paint, anything that has benzene in it.

If I got really crazy and wanted to smell gasoline, as an example, that wouldn’t be very good. But I’ve just had to learn along the way different things that may or may not have the benzene chemicals in it, and to read labels. If it says do not breathe, I try not to breathe.

At the end of the day, did they settle on PNH as the diagnosis?

CL: Yes.

Well, I want to thank you, and I want to thank you, Jerry, for joining us today. This was really a tremendous conversation and opportunity to hear about what things were like from both of your perspectives, and we’re so grateful that we got to chat.