An international attorney specializing in data privacy and employment law, Sheila FitzPatrick spent three weeks of every month hopscotching the globe. Curious and passionate, she nurtured a worldwide network of friends who became her second family. A self-described "super-active" person, she loved heart-pounding 2-mile swims in the morning and long, leisurely walks around the great cities of Europe.
She approached staying healthy with the same drive. Regular checkups never revealed the slightest hint of kidney disease. But in 2008, her commando energy started to sputter. Over the course of six months, fatigue crept in. Eventually, she struggled to swim two laps, much less 2 miles.
One weekend, her parents came for a visit and found her lying curled up in a ball on her couch. She'd been there for a week. That's when everyone realized something was deeply wrong.
What did you do next?
It's a long story but I ended up seeing a nephrologist (kidney doctor) in Sacramento. He admitted me to the hospital immediately. Three hours later I was in the operating room having a catheter placed in my chest. Two hours post-surgery I was on dialysis.
I had no idea what was happening. The doctors said my life was hanging by a thread and if they'd waited any longer I would have died. In that respect, I appreciate the quick action but, during my entire weeklong hospital stay, no one told me that my life was going to change radically.
Not until I was discharged from the hospital did I get a call from someone at a dialysis clinic. The person said, "Your new dialysis schedule is Monday, Wednesday and Friday of every week. Each session will take about three hours." I was stunned. I told her that I didn't understand. She told me I had three options: dialysis, kidney transplant or death. I chose dialysis.
What was life like on dialysis?
Being grounded was difficult. My dialysis schedule meant I couldn't travel internationally. I lost most of my European-based clients, which equaled roughly 80 percent of my business. Even traveling domestically was difficult. Some days I'd go in for dialysis at 4:30 a.m. so I'd be finished by 7 a.m. and could catch a plane or drive to see clients in nearby cities.
Where does your drive come from?
I grew up in a large Irish-Catholic family. My dad has nine siblings, my mom has four. My parents taught me to work hard and follow through on my commitments. Quitting was not an option. I also have a stubborn streak that you would not believe. I didn't like being sick. I hated people hovering over me. I told them, "If I need help, I'll call you. In the meantime, go home."
Were you considering a kidney transplant?
Honestly, I wasn't sure I wanted one. It wasn't for lack of offers — I had brothers, cousins and friends step up, which was amazing — but I knew a transplant wasn't a cure. I feared I'd simply swap one set of problems for another. I was nervous about the side effects of the drugs I'd need to take for the rest of my life.
But I was willing to look into it. Did I mention that I'm diligent? I spent 18 months researching the best transplant hospitals. I interviewed people at roughly 30 of the country's leading transplant centers. Everything I saw kept pointing back to UCSF. It was head and shoulders above every other facility in the world, plus it had Dr. Nancy Ascher as chair of the surgery department. She is legendary in the transplant community.
But even after all of that, I was still very much on the fence until a friend took me to the opening reception for the UCSF Connie Frank Kidney and Pancreas Transplant Center and introduced me to Dr. Ascher. I was awestruck. I told her I'd become a big fan while researching my transplant options, but I quickly followed up with the disclaimer that I wasn't sure I wanted a kidney transplant at all. I was still torn.
In a moment I'll never forget, Dr. Ascher looked me in the eye and said, "I would be honored to do your transplant," and she invited me to come see her for a consult. I thought, "Oh yeah, sure! Like a world-famous transplant surgeon is really going to remember meeting me at a party." Well, wouldn't you know that on Monday morning my phone rang? It was one of UCSF's pre-transplant nurse practitioners calling to schedule a consult with Dr. Ascher. All I could think was, "the most sought-after transplant surgeon in the world is reaching out to me." You bet I took that meeting.
What happened in the consult to make you decide on the transplant?
I laid out my concerns about the transplant. I told her that I wanted to take the minimal number of drugs. Plus, I wanted a private room. I thought she'd kick me out for being so demanding but she said, "No problem."
Then she told me that she'd enlist her UCSF colleague, Dr. Chris Freise — also one of the best transplant surgeons in the country — to operate on my brother Terry who turned out to be a great match. I knew right then that I'd landed the "dream team." It was the perfect scenario.
But then you had a setback.
Everything was going according to plan. My brother and I were scheduled for surgery. We had no doubt he'd pass the final physical. He is a marathon runner and one of the healthiest eaters I know. What could go wrong?
Well, two days before the surgery, the entire thing came unhinged. Tests showed my brother had high blood pressure, which meant it wasn't safe for him to go through with the surgery as planned. I felt the dream team slipping through my fingers. I was devastated. I couldn't even talk about it. I just resigned myself to dialysis.
Yet your brother did wind up donating?
A year later, UCSF called me. Unbeknownst to me, the doctors had worked with my brother to get his blood pressure under control. When they called, they said he'd passed all his pre-surgery tests with flying colors and it was time to schedule surgery with the "dream team." So, I hadn't missed my chance after all.
Describe your experience at UCSF.
I've been to many hospitals in my life, and I have never received the kind of care and professionalism that I got at UCSF.
Just one example of how they went above and beyond: My surgery was first thing in the morning. A transplant is a long, complicated procedure, so I didn't get back to my room until 9 that night. By that time, the 35 family members and friends who'd come to the hospital to support my brother and me were gone. Everyone was told to go home and get some rest, that I'd come through surgery well.
That part was true but there was still cause for concern. I had a "sleeping kidney," meaning it didn't work right away. The ultimate fear was that it would never work and the transplant would fail. Doctors and nurses checked on me regularly. But one young doctor-in-training sat by my bedside all night long. Just knowing he was there made the whole experience less scary. I can still picture him sitting there, quietly holding the faith. And to everyone's relief, my new kidney revved to life the next morning.
As a self-employed person, did you work during this time?
Absolutely. I took my iPad, my iPhone and my laptop with me to the hospital and set up a portable office in my room. I kept my regular schedule of work and conference calls. The nurses even put a note on my door to let everyone know not to bother me when I was on the phone. A lot of my clients had no idea I was in the hospital having a kidney transplant. The surgery was on a Friday and by Saturday I was back on the phone and "in the office."
How do you feel since the transplant?
It's not a perfect solution but it's better than dialysis. I do struggle with how the medications make me feel. Some of the persistent side effects I have are nausea, lightheadedness, anemia, diarrhea and fatigue.
I appreciate that my doctors at UCSF didn't sugarcoat how this was going to go. They warned me up front. In fact, when I first met with Dr. David Wojciechowski, who became my transplant nephrologist, he told me all the worst-case scenario gloom-and-doom stories. I walked out of my first meeting with him thinking I never wanted to see that man again! Now I appreciate that he wasn't afraid to tell me the truth. I love him and trust him with my life. He is a phenomenal doctor who exemplifies the world-class team Dr. Ascher assembled at UCSF.
How was your follow-up care?
I am constantly amazed by how closely they monitor me. Every time I have blood work done, which is regularly, someone from UCSF calls me with the results within two days. Dr. Wojciechowski watches my numbers like a hawk and adjusts my drug regimen accordingly.
The best part about having my doctors at UCSF follow me so closely is that I don't worry about how my kidney is doing — I let them do the worrying for me.
Do you have any limitations on your life or your travel?
I'm starting to pick up where I left off. When I travel, I'm careful to take at least a week's worth of medications in my carry-on bag and two weeks' worth in my suitcase as an emergency backup in case I get stuck somewhere. Other than that, I have learned to tune into my body and slow down a bit when it needs rest. But I've learned that taking it easy once in a while is not a bad thing!
Interviewed April 2013 by Catherine Guthrie
To read an interview with Dr. Nancy Ascher, click here.