Personality Changes from Heart Transplants

Wild wild stories

I came across this completely insane paper that talks about personality changes in heart transplant recipients. There are several papers like this, and I’m amazed at how little we know about how our minds and bodies work.

Here’s some excerpts concerning real people and what happened to them post heart-transplant:

You won’t believe how hard it is to generate an image of two people with hearts that doesn’t have romantic overtones

A report in the lay literature describes the case of Claire Sylvia who reported changes in her personality, preferences, and behaviors following a heart and lung transplant at Yale-New Haven hospital in 1988. Following surgery, Sylvia developed a new taste for green peppers and chicken nuggets, foods she previously disliked. As soon as she was released from the hospital, she promptly headed to a Kentucky Fried Chicken to order chicken nuggets. She later met her donor’s family and inquired about his affinity for green peppers. Their response was, “Are you kidding? He loved them… But what he really loved was chicken nuggets” (p. 184, [9]). Sylvia later discovered that at the time of her donor’s death in a motorcycle accident, a container of chicken nuggets was found under his jacket

People develop aversions:

…a 5-year-old boy received the heart of a 3-year-old boy but was not informed about his donor’s age or cause of death. Despite this lack of information, he provided a vivid description of his donor after the surgery: “He’s just a little kid. He’s a little brother like about half my age. He got hurt bad when he fell down. He likes Power Rangers a lot I think, just like I used to. I don’t like them anymore though” (p. 70, [8]). Subsequently it was reported that his donor had died after falling from an apartment window while trying to reach a Power Ranger toy that had fallen onto the window ledge. After receiving his new heart, the recipient refused to touch or play with Power Rangers.

Get dreams based on memories they couldn’t have had:

…a 56-year-old college professor received the heart of a 34-year-old police officer who tragically lost his life after he was fatally shot in the face. Following the transplant, the recipient reported a peculiar experience, stating, “A few weeks after I got my heart, I began to have dreams. I would see a flash of light right in my face and my face gets real, real hot. It actually burns”

This paper recruited people from Facebook ads and had them fill out surveys on what kinds of changes they had experienced following a heart transplant vs other organ transplants.

It doesn’t find changes in anything other than physical attributes to be statistically more significant than other kinds of transplants and concludes that this is due to changes in exercise tolerance and cardiac output.

But that’s not fun enough. So I dug into the sources cited to find more such stories. Specifically this one titled Changes in Heart Transplant Recipients that parallel the personalities of their donors.

These stories are WILD.

The donor was an 18-year-old boy killed in an automobile accident. The recipient was an 18-year-old-girl diagnosed with endocarditis and subsequent heart failure. The donor's father, a psychiatrist, reported:

My son always wrote poetry. We had waited more than a year to clean out his room after he died. We found a book of poems he had never shown us, and we've never told anyone about them. One of them has left us shaken emotionally and spiritually. It spoke of his seeing his own sudden death. He was a musician too, and we found a song he titled "Danny, My Heart is Yours." The words are about how my son felt he was destined to die and give his heart to someone. He had decided to donate his organs when he was 12 years old. We thought it was quite strong, but we thought they were talking about it in school. When we met his recipient, we were so ... we didn't know like what it was. We don't know now. We just don't know.

The recipient reported:

When they showed me pictures of their son, I knew him directly. I would have picked him out anywhere. He's in me. I know he is in me and he is in love with me. He was always my lover, maybe in another time somewhere. How could he know years before he died that he would die and give his heart to me? How would he know my name is Danielle? And then, when they played me some of his music, I could finish the phrases of his songs. I could never play before, but after my transplant, I began to love music. I felt it in my heart. My heart had to play it. I told my mom I wanted to take guitar lessons, the same instrument Paul [the donor] had played. His song is in me. I feel it a lot at night and it's like Paul is serenading me.

The recipient's father reported:

My daughter, she was what you say... a hell raiser. Until she got sick, they say from a dentist they think, she was the wild one. Then, she became quite quiet. I think it was her illness, but she said she felt more energy, not less. She said she wanted to play an instrument and she wanted to sing. When she wrote her first song, she sang about her new heart as her lover's heart. She said her lover had come to save her life.

This has an element of supernatural and it’s easy to dismiss in a way, and the only new thing is an interest in music. But this one is different:

The donor was a 24-year-old female automobile accident victim. The recipient was a 25-year-old male graduate student suffering from cystic fibrosis who received a heart-lung transplant.

The donor's sister reported:

My sister was a very sensual person. Her one love was painting. She was on her way to her first solo showing at a tiny art shop when a drunk plowed into her. It's a lesbian art store that supports gay artists. My sister was not really very "out" about it, but she was gay. She said her landscape paintings were really representations of the mother or woman figure. She would look at a naked woman model and paint a landscape from that! Can you imagine? She was gifted.

The recipient reported:

I never told anyone at first, but I thought having a woman's heart would make me gay. Since my surgery, I've been hornier than ever, and women just seem to look even more erotic and sensual, so I thought I might have gotten internal transsexual surgery. My doctor told me it was just my new energy and lease on life that made me feel that way, but I'm different. I know I'm different. I make love like I know exactly how the woman's body feels and responds - almost as if it is my body. I have the same body, but I still think I've got a woman's way of thinking about sex now.

The recipient's girlfriend reported:

He's a much better lover now. Of course, he was weaker before, but it's not that. He's like, I mean he just knows my body as well as I do. He wants to cuddle, hold, and take a lot of time. Before he was a good lover, but not like this. It's just different. He wants to hug all the time and go shopping. My God, he never wanted to shop. And you know what? He carries a purse now. His purse! He slings it over his shoulder and calls it his bag, but it's a purse. He hates it when I say that, but going to the mall with him is like going with one of the girls. And one more thing: he loves to go to museums. He would never, absolutely never, do that. Now he would go every week. Sometimes he stands for minutes and looks at a painting without talking. He loves landscapes and just stares. Sometimes I just leave him there and come back later.

When you sift through the feelings, the main thing here is 1) a different approach to sex, 2) a new love for paintings. The qualitative changes are subjective and wouldn’t be captured in a survey.

The professor from prior:

The donor was a 34-year-old police officer shot attempting to arrest a drug dealer. The recipient was a 56-year-old college professor diagnosed with atherosclerosis and ischemic heart disease.

The donor's wife reported:

{…} What really bothers me, though, is when Casey said offhandedly that the only real side effect of Ben's surgery was flashes of light in his face. That's exactly how Carl died. The bastard shot him right in the face. The last thing he must have seen is a terrible flash. They never caught the guy, but they think they know who it is. I've seen the drawing of his face. The guy has long hair, deep eyes, a beard, and this real calm look. He looks sort of like some of the pictures of Jesus.

The recipient reported:

{..} I only knew that my donor was a 34-year-old, very healthy guy. A few weeks after I got my heart, I began to have dreams. I would see a flash of light right in my face and my face gets real, real hot. It actually burns. Just before that time, I would get a glimpse of Jesus. I've had these dreams and now daydreams ever since: Jesus and then a flash. That's the only thing I can say is something different, other than feeling really good for the first time in my life.

The recipient's wife reported:

I'm very, very glad you asked him about his transplant. He is more bothered than he'll tell you about these flashes. He says he sees Jesus and then a blind flash. He told the doctors about the flashes, but not Jesus. They said it's probably a side effect of the medications, but, God, we wish they would stop.

So memories and images that the recipient couldn’t have known about, and is not even aware of what they are seeing. The drug dealer looking like Jesus is a curveball that makes this story feel made-up, but it is what it is.

The stuff in kids is the craziest and hardest to disbelieve or explain away though

The donor was a 3-year-old girl who drowned in the family pool. The recipient was a 9-year-old boy diagnosed with myocarditis and septal defect.

The recipient's mother, who knew who the donor had been, reported:

He [the recipient] doesn't know who his donor was or how she died. We do. She drowned at her mother's boyfriend's house. Her mother and her boyfriend left her with a teenage babysitter who was on the phone when it happened. I never met her father, but the mother said they had a very ugly divorce and that the father never saw his daughter. She said she worked a lot of hours and wished she had spent more time with her. I think she feels pretty guilty about it all... you know, the both of them sort of not appreciating their daughter until it was too late.

The recipient, who claimed not to know who the donor was, reported:

I talk to her sometimes. I can feel her in there. She seems very sad. She is very afraid. I tell her it's okay, but she is very afraid. She says she wishes that parents wouldn't throw away their children. I don't know why she would say that.

The recipient's mother further reported about the recipient:

Well, the one thing I notice most is that Jimmy is now deathly afraid of the water. He loved it before. We live on a lake and he won't go out in the backyard. He keeps closing and locking the back doorwalls. He says he's afraid of the water and doesn't know why. He won't talk about it.

So here we have a new fear of water, and a conversation with the donor that touches things that only the donor would know or feel. Doesn’t seem like a significant change.

Here’s another one that makes me feel sad.

The donor was a 16-month-old boy who drowned in a bathtub. The recipient was a 7-month-old boy diagnosed with tetralogy of Fallot, a syndrome involving a hole in the ventricular septum, displacement of the aorta, pulmonary stenosis, and thickening of the right ventricle.

The donor's mother, a physician, reported:

The first thing is that I could more than hear Jerry's [her son, the donor] heart. I could feel it in me. When Carter [the recipient] first saw me, he ran to me and pushed his nose against me and rubbed and rubbed it. It was just exactly what we did with Jerry. Jerry and Carter's heart is 5 years old now, but Carter's eyes were Jerry's eyes. When he hugged me, I could feel my son. I mean I could feel him, not just symbolically. He was there. I felt his energy. I'm a doctor. I'm trained to be a keen observer and have always been a natural-born skeptic. But this was real. I know people will say that I need to believe my son's spirit is alive, and perhaps I do. But I felt it. My husband and my father felt it. And I swear to you, and you can ask my mother, Carter said the same baby-talk words that Jerry said. Carter is 6, but he was talking Jerry's baby talk and playing with my nose just like Jerry did. We stayed with the [recipient family] that night. In the middle of the night, Carter came in and asked to sleep with my husband and me. He cuddled up between us exactly like Jerry did, and we began to cry. Carter told us not to cry because Jerry said everything was okay. My husband and I, our parents, and those who really knew Jerry have no doubt. Our son's heart contains much of our son and beats in Carter's chest. On some level, our son is still alive.

The recipient's mother reported:

I saw Carter go to her [the donor's mother]. He never does that. He is very, very shy, but he went to her just like he used to run to me when he was a baby. When he whispered "It's okay, Mama," I broke down. He called her Mother, or maybe it was Jerry's heart talking. And one more thing that got to us. We found out talking to Jerry's mom, that Jerry had mild cerebral palsy, mostly on his left side. Carter has stiffness and some shaking on that same side. He never did as a baby and it only showed up after the transplant. The doctors say it's probably something to do with his medical condition, but I really think there's more to it.

One more thing I'd like you to know about. When we went to church together, Carter had never met Jerry's father. We came late and Jerry's dad was sitting with a group of people in the middle of the congregation. Carter let go of my hand and ran right to that man. He climbed on his lap, hugged him, and said "Daddy." We were flabbergasted. How could he have known him? Why did he call him Dad? He never did things like that. He would never let go of my hand in church and never run to a stranger. When I asked him why he did it, he said he didn't. He said Jerry did and he went with him.

So there aren’t any big personality changes as much as recognizing people that the recipient would never have known.

I’ll add this one for its complete WTF quality

The donor was a 17-year-old African-American male student, a victim of a drive-by shooting. The recipient was a 47-year-old Caucasian male foundry worker diagnosed with aortic stenosis.

The donor's mother reported:

Our son was walking to violin class when he was hit. Nobody knows where the bullet came from, but it just hit him and he fell. He died right there on the street hugging his violin case. He loved music and his teachers said he had a real thing for it. He would listen to music and play along with it. I think he would have been at Carnegie Hall someday, but the other kids always made fun of the music he liked.

The recipient reported:

I'm real sad and all for the guy who died and gave me his heart, but I really have trouble with the fact that he was black. I'm not a racist, mind you, not at all. Most of [my] friends at the plant are black guys. But the idea that there is a black heart in a white body seems really... well, I. don't know. I told my wife that I thought my penis might grow to a black man's size. They say black men have larger penises, but I don't know for sure. After we have sex, I sometimes feel guilty because a black man made love to my wife, but I don't really think that seriously. I can tell you one thing, though. I used to hate classical music, but now I love it. So I know it's not my new heart, because a black guy from the 'hood wouldn't be into that. Now it calms my heart. I play it all the time. I more than like it. I play it all the time. I didn't tell any of the guys on the line that I have a black heart, but I think about it a lot.

The recipient's wife reported:

He was more than concerned about the idea when he heard it was a black man's heart. He actually asked me if he could ask the doctor for a white heart when one came up. He's no Archie Bunker, but he's close to it. And he would kill me if he knew I told you this, but for the first time, he's invited his black friends over from work. It's like he doesn't see their color anymore, even though he still talks about it sometimes. He seems more comfortable and at ease with these black guys, but he's not aware of it. And more thing I should say. He's driving me nuts with the classical music. He doesn't know the name of one song and never, never listened to it before. Now, he sits for hours and listens to it. He even whistles classical music songs that he could never know. How does he know them? You'd think he'd like rap music or something because of his black heart.

I have no words.

How do we square this?

There’s research now saying cells in all organs store memories the same way the brain does. So maybe it’s just that (I recognize that ‘just’ is doing a lot of heavy lifting there). That could explain why recipients of all kinds of organ transplants have the same amount of personality changes.

A survey, like in the first paper, wouldn’t be able to identify the quality of memory or personality changes, especially not the quality of memories stored in the heart. I suppose it could help to have the donor’s as well as the recipient and their family to do surveys and cross-check. But even there, the problem would be how few memories actually end up persisting or making any kind of lasting change in the recipient, so it wouldn’t seem like a big deal statistically. Like, none of these people changed their careers or their friends circles or changed up their living situation. It would still look like a fishing expedition to map these similarities.

I suppose some metric like the number of memories or personality traits the recipient has newly developed versus how many were shared with the donor, would make more sense to cover this phenomenon.

Until someone does that kind of work, I’ll be here believing in magic and spirits.