Richard Lee Norris, 42, of Covington, Louisiana, belongs to a rare group: the handful of patients worldwide who have undergone full face transplantation, which is still a relatively young capability. Injured in a 1997 gun accident, Norris spent 15 years as a near-recluse. In March 2012, he underwent a 36-hour procedure to replace his facial skin, nose, lips, teeth, tongue and both jaws at the R Adams Cowley Shock Trauma Center at the University of Maryland Medical Center. U.S. News caught up with Norris to see how the facial transplant has changed his life. His answers have been edited for brevity.
How are you doing now?
I’m doing real well. Actually, your timing’s pretty good. This is a significant time for my transplant: I’m right at my five-year mark now.
That’s a major milestone. How do you feel about your new face, five years later?
It’s given me my life back. It’s given me a new outlook on life. It makes you realize what not to take for granted.
[Read: What You Should Know About Face Transplants.]
How often do you need to be seen for follow-up after your transplant?
I’m seen every couple months. Because [his results add to the body of knowledge], it can help the next patient with a transplant. I go to New York next month to see Dr. Rodriguez again. [ Dr. Eduardo Rodriguez, who led the University of Maryland transplant team, is now with NYU Langone Medical Center.]
Do you take a lot of medication daily to avoid transplant rejection?
It’s not as much as people think. [He is on a standard anti-rejection drug regimen of Prograf, Cellcept and the steroid prednisone.]
You were living as a recluse in the 15 years after your accident, before your transplant. When did you first go out in public after the operation?
I was in the hospital for about 61 days. It was almost like cabin fever. One of my nurses took me out in public, right around the hospital, just for a little fresh air. After I left the hospital, I went out pretty much every day.
What was it like going out in public after you were discharged, and people were just looking at you like anybody else?
It took me a while to get used to walking down the street after a face transplant, and people didn’t even notice.
What has the recovery process been like?
It’s constant improvement. It takes years to learn to read and write and it takes years to get your muscle functions back like your smile, your frown pucker or any movement of the lips. Some things came back faster than we thought, like the sensation. Other functions take longer to come back, because your brain has to reprogram itself to do them. … It’s getting there.
Do you feel like you can smile and make other expressions and it’s fine?
When I smile you can tell I’m smiling, but it’s not a big, cheesy smile. I’ve always been the type of person who tended to smile more with my eyes than with my mouth.
[See: 12 Questions to Ask Before Discharge.]
How about taste, smell and eating?
I had very limited taste and smell before. At the time before the transplant, I really didn’t have a nose; I only had a skin flap from a prior surgery. Once I had a nose and I was able to smell better, the taste was able to come back.
The first thing I got to smell … Right across the road from the hospital, they had just had a graduation for some doctors and they had freshly mowed the grass. One of the first foods I smelled and tasted was crab bisque. That’s kind of unique to Baltimore. [Norris now enjoys crawfish among other local Louisiana fare.]
Did you ever need a feeding tube?
I had a feeding tube for two reasons. One was for a while until I was able to eat with my mouth and the other was to help me take the medications. [The tube] came out a couple years ago.
Have you had any red flags of transplant rejection or concerning signs?
One was caused from the sun. I’d been out all day in Baltimore and I got sunburned and it caused rejection. The good cells that try to heal sunburn will attack the face because it [recognizes] it as a foreign object. [The second episode, related to an effort to change to an anti-rejection medication with fewer side effects, put Norris in the hospital for a month to receive intravenous treatment.]
You’ve publicly shared your story with the media. Why?
I care about sharing my story with people who’ve had some kind of disfigurement, whether it be to the face, the arm or the leg. [I hope] they’ll look at me and think, hey, maybe there’s a chance I can get my life back.
What should readers know about life after injury but before face transplant?
Life before is very difficult. You have to deal with being kind of like an outcast. People don’t really understand. Stopping and staring at someone that’s handicapped in any type of way is very disrespectful. And it’s even worse when you say something. They can’t help it. They’re going through enough in their life and that’s the last thing they need.
[See: 10 Lessons From Empowered Patients.]
Is there any psychological or identity issue around having a transplant using another person’s face?
I don’t look at my face and say, “Oh, this is somebody else’s.” I see it as mine and my own identity. I also see it as having the honor to carry on the legacy of a wonderful young man whose generosity in being an organ donor gave the gift of life to five other people as well.
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Life After Face Transplant: Q&A With Patient Richard Lee Norris originally appeared on usnews.com
