Erin's Road to Recovery
Donation protected
Getting the life-saving double lung transplant she needed
If there's one thing you should know about Erin, it's that she's a fighter. Life dealt her a tough hand, but she’s persevered with true grit. Born a fraternal twin, only Erin has cystic fibrosis (CF), a genetic disorder that affects the lungs and other vital organs. Her parents were told at the time that the average life expectancy was 18.5 years—that number has thankfully risen to the late 30s in present day. This chronic disease manifests differently for different people. For Erin, her lung and nasal cavities fill with mucus, which she must expel in order to breathe; her intestines do not digest food properly; and issues with her pancreas have resulted in CF-related diabetes. As a child, she had to have a tube inserted through her abdomen to deliver food directly to her stomach.

In her early 20s, Erin almost died from a lung infection, coughing up cups and cups of blood. Over the years, she’s had two sinus surgeries and a lobectomy (partial lung removal). A day in her shoes means waking up at 5am to do a treatment of aerosols and a vibrating vest for 1.5 hours, working a full-time job and rushing home at lunch for another 45-minute treatment session, and ending the day with another 1.5 hours of treatment. Did I mention she has a 9-month-old baby?

Erin met Hank in 2008. When they started dating, she was apprehensive to tell him about her condition. Hank told me in an email that “Erin is a good person who deserves a normal relationship.” He stayed knowing how hard it would be and he loved her knowing it might be fleeting. It takes a special kind of man to do that. Hank always wanted a family, but Erin was hesitant because of her CF. Not only would it mean more work, but what if she couldn’t be around if she got sick? After two failed attempts and as the one remaining viable embryo, baby James must have inherited his mother’s fight—he was carried safely via surrogacy until his arrival on June 9, 2018.

10 days before James’ birth, Erin got on the lung transplant list at University of Washington Medical Center. Eight months later, she called me, “I got lungs”—her voice small, frightened. “I don’t want you to do it,” I blurted out. I had read all the stats (78% of patients survive the first year, 63% survive three years, and 51% survive five years) and the risk seemed unbearably high. What I didn’t know was that Erin’s lung function was down to 20% that of a normal person—walking even short distances had become taxing, her lips turning blue because she was using up the oxygen in her body; frequent stays for IV antibiotics at the hospital had become the norm; and rushing to the ER because she was coughing up blood just another mid-year excursion.

On Monday, March 11, 2019, my courageous friend underwent an 8-hour double lung transplant surgery. On Thursday, her ventilator tubes were removed and she took her first unassisted breaths with her new lungs. On Saturday, she managed to take a 200ft stroll down the ICU corridor. These milestones are small but bright, and there’s now so much hope for Erin, Hank, and James’ future as a family.
The medical expenses, trips to and from Seattle, and cost of temporary housing in town have taken a tremendous toll. With at least a three-month recovery period ahead and the need to be close to UW’s medical facilities, Hank and Erin will have to navigate potentially months of lost wages, Hank returning to work in Portland while traveling back and forth with baby James, and the uncertainties that lie ahead. While the good news is Erin’s parents and I will be by their side every step of the way, they could still use all the help they can get. Please consider making a monetary donation to support them on Erin’s road to recovery.
If there's one thing you should know about Erin, it's that she's a fighter. Life dealt her a tough hand, but she’s persevered with true grit. Born a fraternal twin, only Erin has cystic fibrosis (CF), a genetic disorder that affects the lungs and other vital organs. Her parents were told at the time that the average life expectancy was 18.5 years—that number has thankfully risen to the late 30s in present day. This chronic disease manifests differently for different people. For Erin, her lung and nasal cavities fill with mucus, which she must expel in order to breathe; her intestines do not digest food properly; and issues with her pancreas have resulted in CF-related diabetes. As a child, she had to have a tube inserted through her abdomen to deliver food directly to her stomach.
In her early 20s, Erin almost died from a lung infection, coughing up cups and cups of blood. Over the years, she’s had two sinus surgeries and a lobectomy (partial lung removal). A day in her shoes means waking up at 5am to do a treatment of aerosols and a vibrating vest for 1.5 hours, working a full-time job and rushing home at lunch for another 45-minute treatment session, and ending the day with another 1.5 hours of treatment. Did I mention she has a 9-month-old baby?
Erin met Hank in 2008. When they started dating, she was apprehensive to tell him about her condition. Hank told me in an email that “Erin is a good person who deserves a normal relationship.” He stayed knowing how hard it would be and he loved her knowing it might be fleeting. It takes a special kind of man to do that. Hank always wanted a family, but Erin was hesitant because of her CF. Not only would it mean more work, but what if she couldn’t be around if she got sick? After two failed attempts and as the one remaining viable embryo, baby James must have inherited his mother’s fight—he was carried safely via surrogacy until his arrival on June 9, 2018.
10 days before James’ birth, Erin got on the lung transplant list at University of Washington Medical Center. Eight months later, she called me, “I got lungs”—her voice small, frightened. “I don’t want you to do it,” I blurted out. I had read all the stats (78% of patients survive the first year, 63% survive three years, and 51% survive five years) and the risk seemed unbearably high. What I didn’t know was that Erin’s lung function was down to 20% that of a normal person—walking even short distances had become taxing, her lips turning blue because she was using up the oxygen in her body; frequent stays for IV antibiotics at the hospital had become the norm; and rushing to the ER because she was coughing up blood just another mid-year excursion.
On Monday, March 11, 2019, my courageous friend underwent an 8-hour double lung transplant surgery. On Thursday, her ventilator tubes were removed and she took her first unassisted breaths with her new lungs. On Saturday, she managed to take a 200ft stroll down the ICU corridor. These milestones are small but bright, and there’s now so much hope for Erin, Hank, and James’ future as a family.
The medical expenses, trips to and from Seattle, and cost of temporary housing in town have taken a tremendous toll. With at least a three-month recovery period ahead and the need to be close to UW’s medical facilities, Hank and Erin will have to navigate potentially months of lost wages, Hank returning to work in Portland while traveling back and forth with baby James, and the uncertainties that lie ahead. While the good news is Erin’s parents and I will be by their side every step of the way, they could still use all the help they can get. Please consider making a monetary donation to support them on Erin’s road to recovery.
Organizer and beneficiary
Julia Li
Organizer
Seattle, WA
Erin Burke
Beneficiary
