I Got A Hand Transplant: 5 Horrifying Realities
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Amanda Mannen
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Anonymous
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- January 04, 2016
Newspapers raved about the story of Jane Halston, the young mother who had lost an unacceptable number of limbs and became one of the first people in the world to receive a successful hand transplant. However, it wasn't all sunshine and thumb wars. (Spoiler: She doesn't have the hand anymore.) Here's the story the media didn't cover.
5"There was a whirlpool treatment for my skin where I would get in the whirlpool and my fingers would just fall off"
When Jane was 15, she caught a common case of norovirus that, for reasons no one can explain, quickly turned into an uncommon case of septic shock, followed by an altogether too lengthy coma. Long story short, both of her legs and parts of both of her hands needed to be amputated. And because this poor girl apparently hadn't suffered enough, it wasn't exactly a clean cut.
"They amputated my legs about three months, give or take, after I initially got sick," Jane told us. "And then my hands, when they amputated those, it wasn't in one shot like my legs were; it was over a year or year and a half. I had several procedures, because they let my hands self-amputate."
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Which you may recognize as medical speak for "fall the fuck off on their own."
If you're anything like us, that last sentence raised several questions: What? How? And, Oh God, why? As to the what: The doctor who was doing her amputation had offered her a spot in this transplant study, Jane explains: "He let my hands self-amputate so I would have as much living tissue as possible." Our next question, asked with extreme trepidation: How?
"They basically let them just fall off," Jane says. "My hands first got necrotic, so they turned black. I would go to therapy for my hands to get all the dead tissue off, and my fingers -- there was a whirlpool treatment for my skin where I would get in the whirlpool and my fingers would just fall off. I think it was my pinkie the first time. There was just nothing left for them to hang onto." She cheerfully points out: "It made other people more uncomfortable than it did me." Our new hot tub phobia can attest to that.
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"Don't imagine what's in the filter, don't imagine what's in the filter, don't imagine-"
4"My hand functioned beautifully. ... It worked like 98 percent normally"
The process of the surgery begins before you can even get on the transplant list. "There's a long period where you have to do a ton of tests," Jane says. "They have to look at every organ that you have and make sure you're in the correct physical condition to accept the transplant. So I went through that whole process and got approved for a transplant." It's a good thing, too, or that reenactment of your worst anxiety dream would have all been for nothing.
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Yup; they check your pancreas to make sure you're in good enough condition to pick your nose.
The surgery itself was comparatively easy. "I wanna say it was between 13 and 16 hours long," Jane says. It went off without a hitch. When all was said and done, as she told the newspeople: "My hand functioned beautifully. ... It worked functionally like 98 percent normally." What they didn't report was the hellish journey it took to get there. You don't just wake up with a brand-new hand and start flipping people off to your heart's content. As Jane describes it, "It was so incredibly heavy; it was like having a Volkswagen attached to my arm."
So began the long, tedious process of rehabilitation therapy. "The rehab was just intense, very very very intense," Jane says. "I had to stay in the hospital for two and a half to three months ... just so they could monitor with the medications and all that, and therapy started a couple days after the transplant. And at that time, it wasn't too intense, because it was just trying to move it." Eventually, though, having a hand became pretty much a full-time job: "I would go [for therapy] six hours a day, five days a week, and that continued for another two to two and a half years."
Damn, way to stick it out, Jane! We'd give up and go with a robot claw after a tough afternoon.
3"Once you take them up on their handout, they pretty much own you"
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Even beyond the two years of 30 hours of therapy a week, a foreign appendage requires a lot of maintenance. But the hospital where the study was located was far away, so every doctor visit involved a plane ticket. And then there's the PR work. Jane's husband, Rob, jumps in here, because some of Jane's memories during this time period are pretty fuzzy, for reasons we'll get to in a minute.
"Once you take them up on their handout," Rob says, "they pretty much own you. They require you to do promotional functions, distribute intimate studies about you to anyone who can find or steal a lab coat, require check-in, complete with pictures of the hand and mandatory trips to Baltimore anytime the hand has any indication of rejecting again. That last part is my favorite, because it's on our dime."
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Actually, "dime" might not really be the right word.
Huh. When you put it that way, it doesn't sound like much of a handout. (Oh, we just got that! Good one, Rob!)
"It seemed like every doctor, every medical student, every nurse, anybody with a lab coat would come in," Rob says, about being at the hospital. "They never even gave her enough time to sleep, because we would have medical students that wanted to come in and ask her all kinds of questions and take pictures. We just had masses of doctors and different people, and they don't really ask you if you mind. If we were in the hospital for a week, we would probably have to talk to 20 or 30 different groups of doctors, and she'd have to basically repeat her history every time." In that sense, it's not much different from being a living demo on display at a trade show or something. As Rob puts it, "It was like she was more of a specimen than a human." Jane adds, very matter-of-factly, "Because I was. I was part of a study."
2"It actually physically starts rotting"
John Heller/Press Of Atlantic City
A successful surgery is only Step 1: The threat of rejection is constantly looming, hopefully kept at bay with a mobile pharmacy Keith Richards would envy.
"Prograf was the primary medication I took," Jane says. "That was the anti-rejection drug. I was on a fairly high dose of that pretty much the whole time." It worked to keep her hand from actively falling off, but it had the teensy side effect of, um, kidney failure. "When they tried to lower my medication, it was a day or so [before] my hand started rejecting, and that's the point where everything started to go downhill."
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"The dosage? How about 'Stop taking once you feel like you're on the verge of death by blood poisoning'?"
Wanna know what happens when a hand transplant starts to reject? No? That's completely reasonable. We're gonna tell you anyway.
"It actually physically starts rotting," Rob remembers. "She would have these sores that would open up and start to break down. ... She had fingernails that would start falling off. ... There were nights that I would lay up with her, and she was just crying." Jane says, "It was like it was on fire, is the best way to describe it, and it was just constant."
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Knowing that this was her only hand trying its best to self-amputate again couldn't have been great for morale, either.
In order to keep her hand and her kidneys functioning, she was given medication for her kidneys and switched to a different anti-rejection medication, "which completely destroyed my immune system," Jane says. "So they gave me the Neupogen shot, and that increases your white blood cell count. I think it's a treatment they commonly give to cancer patients." And it made her feel like one. "It just made me severely sick. I had nausea, flu-like symptoms, all that," she continues. "I had to have several steroid treatments, where you would go in and -- sometimes I would do it outpatient, sometimes it would be inpatient -- and they would give me three days of a very, very high dose of steroids, and that would suppress your immune system even more so your body would stop trying to reject the hand."
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But who needs their most basic ability to fight disease, anyway?
"Of course, throughout the whole time, there was the pain medication," Jane says. That's another part of the story that wasn't exactly PR-friendly: Jane was left with a completely new problem in the form of an opiate addiction. As a final insult, Rob says, "After she tried to call them to get help for the drug addiction, they started to deny her any form of pain management any time she had to go into the hospital." All told, the addiction ended up lasting longer than the hand.
1"I was getting steroid psychosis, and my husband had to tell me things that I was doing"
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The hand was literally driving Jane crazy. "They wanted me to keep my hand unwrapped whenever it would reject," she says, "and that was hard just from a psychological standpoint. ... It was so swollen and red, and it looked like I had some weird disease. ... Just trying to go to the store -- people would think I had something contagious." An antidepressant was added to her miles-long list of medication. "I don't know if it was just the medication or the stress from everything that did it, [but] it kind of changed my personality a bit," she says. "I was getting steroid psychosis, and my husband had to tell me things that I was doing."
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Which is a cocktail of mania, depression, mixed mood episodes, and delirium,
for those not up on their drug-induced psychoses.
The turning point was when she found out her father had cancer. "I wasn't able to commit that much time to the hospital anymore," she says. "It just took so much time away from my daughter, and I was trying to go back to school." She admits she "wasn't the best patient" and "didn't keep up on my treatment as well as I should have."
But, in her defense, she says: "I was functional before; I had prosthetics on my legs and something that helped me write. ... I got a little disillusioned about what it would be like to have a hand. ... The medication was making me sicker than I already was."
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"If it's not broke, don't fix it." Or, in this case, "If it's broke but you can still lead a full life, don't fix
it with a kidney-destroying, immune-suppressing, psychosis-inducing avalanche of drugs."
So Jane decided to end it and had her hand amputated all over again. She's not ungrateful for the opportunity: "My hand worked beautifully," she reiterates. "Functionally, it was fantastic. But all that came with it, it just didn't work for me." In the end, for her, all the bird-flipping in the world just wasn't worth it.
Manna complains far too much about her own life, all things considered, on Twitter.
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