Transplant Recipient Amy Tippins is Living Life to the Fullest

When you first get a chance to chat with Amy Tippins of RockScarLove.com you are immediately impressed with her self-assuredness and down to earth welcoming air. It doesn’t occur to you that she carries a physical scar. A scar she wears proudly. After conversing with the 35 year old transplant recipient 20 or 30 times you get to enjoy a warmly wicked sense of humor – and for your listening, you get paid back with lots of laughs on your own. If you check out her Facebook page any morning, her self–deprecating one-liners are enough to make you laugh out loud, shake your head, and comment as several of her other friends typically do. On top of that, the captivating 6’1 blonde Atlanta native, entrepreneur, former swimmer, basketball player, and transplant survivor is more than anything – just a really cool chick.

And like many transplant recipients, she’s overcome more than you or I could even imagine. Her story is amazing, stunning, and sobering all at once. Amy Tippins is inspiring a whole new group of people, including those at GoGettersMagazine.com.

Luxury of Youth Lost

It’s not uncommon for people to take their health for granted at times while things are going good, especially when you’re young. We all know the sayings: “You don’t think you’ll ever grow old.” “ That you’re immortal.” “That you’ll never die…”

For the 35 year old Tippins, the luxury of thinking that way began to erode when the 8th grader returned from a church mission trip to Florida with small blisters on her ankles. She was prescribed medication by her dermatologist, only to have the rash continue to travel up her legs. Over the course of that year, while participating on the basketball and swim teams, she became anemic, developed a consistent low-grade fever, and had trouble sleeping.

By 9th grade, the Shiloh High School student’s athletic career was blossoming as she played on the Freshman and JV basketball teams – all while maintaining her swimming career. But her health continued to deteriorate as she also began to run fevers between 102-105 degrees for three-four day stretches every week or two. And the rash she’d developed in 8th grade had by then traveled up her body to her chest. At this time Tippins began to experience chest pains which would double her over in excruciating pain. It was not uncommon for the pain to be so bad she had to be picked up from the school hallway or lunch room floor and carried to the nurse’s office.

It got even worse as her sleep issues developed into full-blown insomnia. While most kids her age slept like babies after a full day of school, studying, and athletics, Tippins lived through the misery of being up 2 days straight – followed by periods where she’d crash and sleep for 14 hours.

From a Bad Dream to a Nightmare With No Diagnosis

According to Tippins… memory issues began to develop as her other problems worsened. “I could study a topic at school for 3 hours and have no idea what I learned several hours later. I’d begun having problems standing up for extended periods of time. Walking had become painful due to my muscles basically deteriorating. During the basketball season it wasn’t uncommon for me to have great games where I was hitting shots and shutting down all opposing players only to have other games where I would get confused on the court. At this point I was not caught dead in shorts or skirts due the sores from the rashes on my legs being very deep to the point they were seeping blood and fluids.”

Tippins’ weight continued to drop. And she’d also started seeing a Dermatology specialist, an internist, and an infectious disease specialist. She was also hospitalized multiple times for periods up to 2 weeks, and was tested for lupus, HIV, and muscular dystrophy. All came back negative. Physically she looked sick, but continued to be frustratingly undiagnosed.

Doubting Her Story and the Cruelest Cuts of All

At a time she would have welcomed an increasing amount of support, Tippins began to feel certain people doubted that she was really sick when she needed them most.

Amy believed her her teachers were holding her story against her, and in her mind behaving unfairly towards her. She believed her basketball coach chalked up her lack of energy and attention to laziness, not illness. According to Tippins it was not uncommon for him to yell at her. And still in her awkward stage and very sick looking – other students became very cruel towards her in a manner most people would find tough to stomach.

“On a daily basis I was mocked when walking down the hall at school. It wasn’t uncommon for guys to yell out loud to me telling me how ugly I was and ask what was wrong with me, my skin, and why I wore sweat pants all the time.”

Beginning to Mentally Crack

By 10th grade Tippins began seeing a Pediatric Neuromuscular disease specialist who suggested her parents check her into a mental clinic, suggesting she was trying to deflect their attention from her brother. It wasn’t uncommon for her to miss a few days of school a week because she was physically unable to get out of bed. Her legs were packed in steroids about 4 times a days for 30 minutes in an attempt to prevent her rash from getting worse. It didn’t help. She was unable to sleep for days.

“At this point I think I started to mentally crack. I began to struggle with the emotional side effects of people not believing me. I started to believe I was crazy.”

Yet her diagnosis remained frustratingly elusive as the search for a cause gained intensity.

Trying to Dial it in

While struggling to keep it together mentally and emotionally, Tippins was seeing doctors approximately 3 times a week in an attempt to finally discover what was wrong, and to manage her symptoms. She still played basketball and ran track that year, but missed over half of the games and meets, at a time in her life she should have been dominating.

An entire medical team along with one of the top “Rare Case” specialists in the country examined her situation. She was in and out of the hospital 3 or 4 times that year. At one point she was put in complete isolation where the only people that could see her were her doctors and mother, who wore masks, rubber gloves and gowns to come in to the room. To the teenaged Tippins, it looked like they coming in to perform surgery. Her meals were shoved through a trap door in her hospital room.

After several MRIs and CT scans, doctors found 2 small shadows on her liver, but believed due to her age they could not be tumors. Yet her blood tests showed signs of liver failure. Doctors performed two liver biopsies which came back negative.

“For people who’ve never experienced this, imagine a needle about 6 inches long and very fat stuck into your liver while you’re awake. Extremely painful to say the least.”

Struggling to Continue

By this time her parents had hired a full time tutor just to help her pass 10th grade. After her high school prohibited her from driving to school due to her condition, her parents had her home schooled for the remainder of the year. And when things seemed like they couldn’t get worse for the physically maturing Tippins, they did.

“I’d been begging my parents to take me out of school anyway at this point because I got picked on so badly I could barely handle passing through the front doors of my school. It had also become impossible me for me to walk at times. My legs would give out, and my brother would have to carry me to bed or to the sofa. The doctors had given me some medication to help with the anxiety of the itching, but it caused me to lactate, which was very hard to deal with as a young girl when you’re already scared of what is happening with your body, and you’re a virgin.”

The stress was taking a toll on her family as well. By 11th grade Tippins transferred to Providence Christian Academy but was too sick to try out for any sports. Her brother who’d been a bedrock of support went off to college, which left her feeling alone. Her relationship had broken down between her and her parents, with yelling becoming the primary form of communication between them. At that point she felt her father started to really doubt her sanity. Around this time her parents’ marriage began to spiral downward.

“I started seeing a psychiatrist at the time to learn how to just make it from day to day. As far as doctors, it was a repeat of the prior year. Hospitals, isolations, tests and no resolution.”

Finally a Diagnosis – But not Home Free

In October of her senior year she started coughing so badly her parents took her to her primary care physician. He thought she had pneumonia, but the x-rays showed nothing. He then sent her to a gastroenterologist at Emory who sent her on to Emory Liver Specialist, Dr. Robert Gordon, who was the department head.

“We showed up for our first appointment with Gordon and Dr. Andrei Steiber walked into the room and introduced himself. My mother told him that he could go get Dr. Gordon because he was not the person we were scheduled to see. She told him she was tired of being passed off to people, tired of being given the run around, tired of doctors appointments, and tired of not knowing what was going on.”

Dr. Steiber responded, “Well lady, I’m the best one to handle your daughter’s case. I’ve reviewed her situation and I can figure out what’s wrong with her. She’s now my responsibility.” I’m pretty sure my mom hugged him before he finished talking. He’d studied under Thomas Starzle who did the first ever liver transplant. He reviewed my case and recommended a resection of the large tumor, but upon updated CT scan realized I had over 2 dozen small tumors. The type of tumor I had is typically only seen in woman on birth control, but I had never taken a pill. Effectively, there was no medical explanation of my disease.

My case has since been studied and reviewed in medical classes at Emory. It’s been documented in medical books. On a humorous side note, imagine later in life having young doctors hitting on you, and telling you they remember studying your case in med school at Emory. I’ve gotten a kick out of that irony.”

By this time she was extremely sick and literally scratching all the time. Somewhere around Dec 22 or 23rd of that year Dr. Steiber admitted her to the hospital for a one week observation and testing. His recommendation was that Tippins needed a transplant. But that was only a first step. As part of the process she was required to be evaluated by a battery of specialists. The doctors then had a conference where they all had to agree to put her on the transplant list or she’d have been denied. And that’s where things got really interesting.

Tippins describes the experience. “The Psychiatrist in my case came to me the morning of transplant review board meeting to tell me he was recommending I NOT get put on the list. He told me since they had no logical reason why I had my disease, they needed to discover why, along with what else they could do for me. At that critical moment, the only solution to save my life was a transplant. I looked him in the face and said, “WTF are you planning to do then? Because you know this is the only way I can live. Are you really willing to look me in the face and tell me you are willing to let me die when you know this is my only option?”

When they went into conference my surgeon pulled him across the table by the tie and said, “You have a 6 week old daughter! What would you want someone to do for her? You will vote to put her on the list. She is young and deserves a chance.”

She got put on the transplant list.

Breaking the News and Surgery

And then the 12th grader confronted the issue of breaking the news to her classmates.

“I chose to go in and tell my senior class (I only had 40 in my class) myself as opposed to having a teacher tell them. It was one of the hardest moments of my life. Transplant was relatively unknown. It was implied that most likely it would only extend my life for a few years. I was also told if it was discovered I had cancer they would not give me the transplant, but send me home to die.”

At that point the intensity of the situation continued to mount. Her doctor called her mother and told her Tippins had one week to live without a new liver. That week came – and went. A week after that, (Feb 19th) she got a call around 5:30 pm, and arrived with her parents at the hospital that night. Everyone from the principal of her school to the janitor showed up to visit her family, including her surgeon and his wife. The next morning she was rolled me into a surgery which was supposed to last 6-8 hours. Instead it lasted for 14. The tumor was so big that her doctor was fearful it was cancer. He had to take off his surgical glove and put his bare hand inside her to feel the tumor to determine it was benign. To the relief of everyone involved the surgery was a success.

“My Doctor told my parents I should have been dead 6 months before because my liver was so extensively damaged. Effectively, there was no explanation why I’d remained alive.”

We at GoGettersMagazine.com have our own thoughts as to why Amy Tippins survived and thrives 17 years later. She’s educated us, and has been an absolute pleasure to get to know. She’s also touched the lives of so many in the Transplant Community, and continues to do so with her RockScarLove clothing line. Amy Tippins is truly an inspiration.

The facts of Tippins’ story are captivating enough, but upon hearing them we wanted to ask her more questions.

GGM: Describe the emotions you felt from the perspective of a young girl just beginning to come of age, grow into her body, deal with that awkwardness, cruelty of kids, disbelief of coaches and others.

Tippins: “As a young teenage girl all I wanted was to be normal, pretty, for a boy to want to date me, for teachers not to yell at me and parents that loved me. While my parents did love me and made sacrifices for me there was a tremendous amount of stress in the home. And after being told so many times that nothing was wrong with me, it made my relationship with my parents strained. That hurt. It made me sad, lonely and pissed off. I was confused as to why I was sick and why everyone could not just get off my back about what was wrong with me. I wanted to leave my life, run away and just be sick alone and die if that was what the outcome was going to be. I was so emotionally tired from being a disappointment to everyone around me. Not only was I a crappy student and a crappy athlete when my illness kept me from competing up to par – I also felt I was a failure as a patient because nobody was able to figure out what was wrong with me. I was also horrified and embarrassed to have anyone look at me. I was covered in sores from head to toe. I pretty much felt like a “girl in the movies that everyone pointed at and laughed at.” I felt I was all alone in a world where nobody understood what was going on. And while there were other transplants happening at Emory University, none of them were 17 year old girls. Most were men in their mid 50′s who needed transplants because of self destructive behavior. I felt like I would always be stuck on an island by myself and no one would ever know or understand me.”

GGM: What were you feeling as you headed into the transplant?

Tippins: “When I had my surgery, it was long before ‘transplant’ was a word you could Google. I don’t even know if there was the term ‘Google’! If there was information online it was very little. My parents and I were told there was no way to know what my life expectancy was. It could be 3 months or 3 years (living as long as I have with the same liver and no issues is still not the norm). I was scared and angry. Scared of death, scared of how painful it was, scared of the unknown process, and scared certain family members of mine would not be able to survive without me. I was furious with God. I had been a good church-going girl and this was the payback I got. I was angry that someone had to die in order that I had to live. Angry that I would never enjoy a full life, have first dates, first kisses, first jobs, a first home. I had a lot of living to do and I was pretty sure that death was the only way it was going to work out for me. That was until I decided to get really pissed and say “Screw you transplant, you have no idea who you just picked to do battle with. I will win.”

GGM: What were your feelings and adjustments post transplant?

Tippins: “Transplant is continually about feelings and adjustments for the rest of the recipient’s life. We are adjusting to medications, to changes in our bodies and figuring out which ‘do’s’ and ‘don’ts’ are appropriate for us. As far as feelings, initially post transplant I was still angry for a few years that this was my journey, and I was a little bitter. And there are times I really fear being sick again. Right now I am in a place of hope, love and gratitude. I love and have a longing for the man who gave me his liver, a man whom I know nothing about or his character. I hope and pray that he looks down on me with pride from heaven, and that I am doing today what I am supposed to do.”

GGM: Was there a moment post-transplant where you just said to yourself – “I’m going to live a full life!”

Tippins: “I never considered not living a full life. I was back in school, at the gym and living life fully 3 months post-transplant. Back then that was quite a feat since most transplant patients were only getting out of ICU when I was checking out of the hospital. I just did not know how much time I had left. Yes, there was a moment one day a few years afterwards when I was doing something at home and it hit me and I looked at my father and said “I am going to be okay. I am going to live.” I think that was the first time I was able to stop and just breath since I had been a small girl.”

GGM: You mentioned some fantastic things about your transplant surgeon. How do you feel about him today?

Tippins: “I think Andrei (Dr. Steiber) has got to be one of the most amazing men I have met in my life. I honestly don’t think you’ll ever meet a transplant patient thinking their surgeon doesn’t walk on water. Not only is he an incredible surgeon, he has pride in what he does for a living but not filled with pride. He is humble. He has compassion and love for his patients. If he sees a fighter in their eyes he’ll do anything in his power to fight for them. He also has an amazing family. After 35 years of marriage he and his wife are still head over heels in love with each other. He’s a man of compassion and love. And he lives his life with passion. We need more men and doctors like him.”

GGM: What are the messages you want to send to transplant recipients? To others who are “healthy?” To employers? Everyone?

Tippins: “To everyone I’d say there is one message that I think is most important: We all have things in life that happen to us. Things that are bad, and life changing. And we’ll never be able to escape them. But the question becomes ‘how you are going to deal with it?’ If someone uses it to be a victim, then one day they’ll find no one around to have sympathy for them. But if they use to in empower themselves, then they become a champion, and champions always have others trying to emulate them.”

“To Transplant Peers: You have this amazing new life ahead of you, along with a very good chance you will feel healthier then you ever have. And now you need to step up to the plate and live it! Go out and create your beautiful, inspiring new life! I believe morally you are bound to do that because of the gift you were given. Honor your donor and your peers, but using the experience as the fuel to surpass the boundaries of mind, body and spirit.”

“To Employers: Patients do have special considerations. For the most part, how they handle these considerations should not be something that you are aware of. For example, I get tired some days. But I just make sure I get more sleep, and make sure my diet is healthy to give me the proper fuel I need. Do not fear hiring transplant patients if they are seeking employment with your company! If they are applying for a job, then they are excited about getting back to work and creating a normal life!!!! There is nothing out there that says a transplant patient can’t work a full time job if they are deemed healthy. I have seen transplant patients work right up until the day they are called in for transplant and go back to work within 3 months. Are there patients out there who have such severe health issues that they can’t work? Of course. There are also transplant patients out there on disability that have no right to be, and that’s unacceptable to me. It can only be beneficial in the long run for a greater percentage of patients to re-enter the workforce. Increased activity helps them stay healthier which means lower medical bills and prescription medications for them. Also, when patients don’t go back to work they usually end up needing more financial support from the government, which comes out of all our pockets.”

GGM: Seventeen years later – here you are. How has this changed you as a person?

Tippins: “It’s made me a more introspective person. I’m more compassionate in certain situations, and also very intolerant of people playing the victim or using something to create drama. I think that I love deeper and am more forgiving of others. I think going through my transplant has made it literally impossible for me to understand people in any situation when they say ‘you don’t understand, I can’t change my situation.’ I guess when you look at death in the eye and ‘flip her the bird’ then something being ‘unable to change’ is inconceivable to me.”

GGM: RockScar Love – tell us about your passion and where you want it to go?

Tippins: “I have plans to expand my company into sports clothing, lounging wear and possibly casual clothes down the line. My greatest passion espoused by RockScar Love is less about the clothes and more about our corporate message “You Choose.” Every moment of our lives is a series of choices. And when something happens to us it’s our responsibility to handle this new challenge. And while each challenge chips away at something in us, does that chipping make us more beautiful or ugly in our hearts? It’s up to each and every one of us! RockScarLove is about so much more than just transplants. It’s about wanting to inspire people to live passionate lives regardless of their journey. I really want more women to learn how to look for and embrace the beauty within them – and to realize that all those scars they have (physical or not) are incredibly sexy.”

How wonderful to feature Amy Tippins in our first issue of GoGettersMagazine.com. Setting the benchmark from the get-go, she’s a GoGetter extraordinaire.