Written by Qing Zhang
Associate Professor at The University of North Carolina
Saturday, January 5th, 2019
My flight just landed in Taipei, the capital of Taiwan. I had flown across the world to attend a close friend’s wedding on Sunday and then present a seminar at Academia Sinica of Taiwan the following Monday. I noticed it was a beautiful afternoon as I started to leave the airport but didn’t get far before my phone rang.
I will never forget the voice on the other end of the line. It was a call from UNC hospital. After confirming my identity, the doctor delivered me the devastating news, Mingjie, my beautiful wife, had gone into cardiac arrest. He informed me that their team had to perform cardiopulmonary resuscitation (CPR) on her for 75 minutes before she finally had a pulse. It was faint, but it was there. This then prompted them to try a last-ditch lifesaving effort of implementing Extracorporeal Membrane Oxygenation, also known as (ECMO). It provides heart-lung bypass support outside of her body.
Her heart function had failed. The doctor told me that she was the sickest patient he had ever admitted. In normal circumstances, most doctors will only perform CPR for 20 up to 40 minutes. To this day, I am still not sure why they performed CPR for 75 minutes, the heroic effort that ultimately saved her life!
My world was collapsing around me as I held the phone to my ear, my heart could never be unbroken from that moment on. I screamed and pleaded into the phone, “Please save her! She’s so young and we have two young children. Please!” I thought about how much I loved her and couldn’t imagine life without her. I thought about our two beautiful children. I thought about all the things we had talked about wanting to do together. I thought about the last text messages we exchanged, telling each other how much we loved one another.
I rushed back to the airport and booked the quickest flight back to the US. It was an excruciatingly long trip, the longest that I have ever taken in my life. Knowing that your loved one is struggling to fight for their life on the other side of the world and there was absolutely nothing I could do. It literally tore my heart apart.
Sixteen and a half hours later I finally arrived at JFK airport in Brooklyn, NY. My next flight, the last flight to Raleigh/Durham (RDU) for the day was out of Newark, New Jersey, about an hour away by car. I only had an hour before the flight took off when I deplaned in JFK. I begged people to let me pass through, zipped through US customs, grabbed a taxi and pleaded with the driver to drive as fast as he could. While in the taxi, I tried to book the ticket to RDU but the agent refused to sell it to me because it was too close to the departure time.
Regardless of what he told me, I kept trying. Luckily for me, the flight was delayed 15 minutes and I was finally able to buy the ticket. By the time I arrived at Newark airport, I was denied a boarding pass because the flight gate had been closed and the plane was ready to leave. I explained the situation to the United Airlines agents. I pleaded and begged, I needed to make that flight. They spoke to the gate agents who agreed to hold the plane for me. I rushed through security and ran to the gate barefoot, not wanting to waste any time to put my shoes back on. The pilot was waiting for me at the gate and gave me a gentle but heart-warming pat on the shoulder. Eventually, I arrived at RDU and rushed directly to UNC Hospital in Chapel Hill.
I thought I was prepared for the worst. I had just spent about 20 hours incapable of doing anything but thinking of all the scenarios that awaited me. I kept blaming myself for not being there during the most difficult time for my wife. I deeply appreciate my friend Jiandong Liu’s generous help in taking Mingjie to the hospital in a timely fashion. Given how fast her heart had deteriorated on her just in a matter of minutes, it was critically important that she was treated in the hospital by the exceptionally competent medical teams that went above and beyond for her.
By the time I arrived at the hospital, she was in surgery. The doctors needed to treat her extensive internal bleeding caused by the extended CPR including broken ribs. During the surgery, they removed 3.5L of blood from her lungs. As I waited for her surgery to end, I finally received more details on her illness. She was diagnosed with fulminant myocarditis, a rare disease that involves inflammation of the heart muscle; a viral infection that can be highly lethal.
Given how sick she was and how severe her disease manifested, the prognosis looked very grim. I still don’t understand how an infection could kill a young, healthy woman. However, the only thing I could do was move forward. I tried to take one moment at a time and see how things developed. I knew that I had to be strong for our family, especially for our 6-year-old daughter Ellery and our 4-year-old son Lawrence. I knew that even in the worst-case scenario, Mingjie would have wanted me to carry the family forward.
Sunday, January 6th, 2019
6 hours after arriving at UNC Hospital, I finally got to see Mingjie for the first time. The medical team kept reminding me about the changes I might see in her. Due to the disease and the surgery they warned me about her extremely swollen body, tubing’s all over her, and also various supporting equipment surrounding her to maintain her body function. I thought that I was prepared for the worst but I was so wrong! I couldn’t help but burst into tears, crying uncontrollably the moment I walked into her room in the ICU. The gruesome image is seared on my brain for the rest of my life. I was emotionally stunned and drained. Life is so fragile.
After barely collecting myself, I reminded myself to “be strong, treat one day being alive as a positive sign and move forward.” As I sat by wife’s side, I started reading everything I could find on myocarditis to learn more about this lethal disease. I felt like the more I knew, the better I could communicate with the medical team on the best treatment in the hope for a better outcome. This was just the beginning.
I learned that ECMO is only temporary, it allows her heart to rest and hopefully recover from the viral infection. At this stage, nobody knows how well or how long it will take her heart to recover, or if it could recover at all. On the other hand, ECMO, can cause complications including bleeding and infections that may be life-threatening given her condition. Long-term ECMO support may even put her in a further weakened physical condition that could prevent her from getting the last available treatment option, a heart transplantation.
Wednesday, January 16, 2019
For the next week and a half, she was getting all kinds of available treatments that included several more surgical operations due to complications. Despite repeated measurements, her heart was not improving, and we were at the crossroads of decisions: shall we continue a few more days of ECMO while taking the risk of losing the only option of transplantation, or put her on the transplantation priority list that may extend her life? By this time, I was sleep deprived, spending every night and most of the day in the ICU by Mingjie’s side. I consulted many friends and doctors on this disease. The medical team had some slightly different opinions on the treatment. It was coming down to the moment that I might have to make the ultimate decision on her behalf, deciding on which path to pursue.
I will never forget Dr. Paul Tessmann, one of her heart surgeons, mentioned that when they measured her heart function after decreasing the ECMO blood supply support, Mingjie’s heart function output remained relatively stable. Therefore, he suggested they try one last experiment by continuing to decrease the ECMO support and monitor her progress. If she started to decline, they would put her on the transplantation list the following afternoon. The medical team and I agreed on this experiment and miraculously, Mingjie’s heart handled the decreasing ECMO support very well, leading us to believe that her heart function might be able to be improved.
The next step was total removal of ECMO support, which would take her off the priority list for receiving a heart transplantation if needed. I was not particularly worried about that since I had full confidence in the UNC medical teams, including cardiac surgeons (Dr. Thomas Caranasos, Dr. Paul Tessmann, Dr. Hadley Wilson) trauma surgeon (Dr. Trista Reid), her heart failure team (Dr. Jason Katz, Dr. Patricia Chang, Dr. Christopher Chien, Dr. Brian Jensen, Dr. Casey Adams and Dr. Mirnela Byku), her infectious disease team (Dr. Anne Lachiewicz and Dr. Alex Duncan), her anesthesiologist (Dr. Lavinia Kolarczyk) and many other supporting team members.
Sunday, January 27, 2019
Things have been improving since Mingjie was taken off ECMO support. Her cardiac output and index have been normal, and she has been maintaining good blood pressure. Her ejection fraction is still low, but this may take more time to stabilize. Her heart rate is still high but that is expected and will continue to need medical management including beta-blockers and ACE inhibitors. Despite the possibility that prolonged CPR, open heart surgeries and prolonged ECMO support may cause serious delirium and permanent neurological cognition damage, Mingjie has overcome the delirium amazingly fast. Within a couple of days after extubation, she showed no signs of neurological damage. She even remembers things better than me and often corrects my Chinese pronunciation errors.
She was transferred out of the ICU to another unit a couple of days ago and has been making rapid progress towards recovery. She is still physically weak, and her body is deconditioned from her three-week ICU stay, requiring rehabilitation. Her appetite has been amazing, and she loves home-cooked meals, which we have been happy to deliver to her hospital bedside every day. She has become a “celebrity” at the UNC hospital and everybody I met would describe this as a true miracle.
It takes a village to make a miracle. I am so thankful and appreciative for the wonderful medical teams at UNC. It is impossible to name all of them. Not only did they save Mingjie, but they saved our family. Dr. Caranasos performed all of Mingjie’s surgeries and every time he would operate, he kept me updated with detailed information on her surgery with a reassuring voice and confidence. I found this to be so important for a vulnerable family member like myself. He said that he treated Mingjie just like he treated a family member, which indeed was the case.
Dr. Katz was in charge of Mingjie for the heart failure during the most difficult first week and offered me his cell phone number so that I could reach out to him anytime. Even when he was out of town or was not in charge of Mingjie in the weeks after, he would still keep track of her condition and treatment plan. Even during the most difficult time, he was still confident that Mingjie’s heart function would come back. His upbeat personality, extensive knowledge and warm connection to patient’s family members really touched my heart.
Dr. Chang brought in her many years’ of expertise in treating heart failure and warm personality every time I talked with her. The nursing team at cardiothoracic ICU was phenomenal, including Taylor, Emily(s), Susan, Michelle, Cesar, Brian. Adam, Shirley, Ashley, Jasmine, Sarah, Stacey, Jamie, Clayde and many others. At the time of her release from the ICU, several nurses that took care of Mingjie were crying. I know that those were happy tears because most people thought that Mingje wouldn’t make it. They were just so happy to witness a miracle happening in front of them, thanks to the dedicated efforts of Mingjie’s medical care. I am forever indebted to them.
Love plays such a critical role in Mingjie’s healing process. Her love for family, especially our kids, made her so mentally strong to go through this extremely difficult time. Even when she was intubated and heavily sedated, whenever I played some family videos by her bedside, she clearly showed strong emotion. I talked with her while she was intubated, telling her to be strong for herself, for our kids and for our family. “Don’t you dare to give up even though the odds are stacked against you!” When she was extubated while still dealing with delirium, the only logical things she said were all related to our beloved children.
She has gone through a few big surgeries on her heart and had surgical cuts all over her body. The pain is beyond imaginable. One thing that can still make her smile during this bone-cutting pain is the daily videos I share with her of Ellery and Lawrence. Our children have not seen her in weeks, and she is determined to get better so that she could be with them soon.
Family members have shown unconditional love by staying days and nights with Mingjie in the ICU and throughout the healing process. Also love from UNC community, including Lineberger Comprehensive Cancer Center (LCCC), Pathology, Pharmacology and may other colleagues around the campus by delivering food, helping with my teaching duties and many other things. Dr. Shelley Earp, director of LCCC, visited Mingjie in the ICU on a daily basis and made sure that she got the best medical care. Love from friends helped me tremendously through this period and I could not thank them enough. Li, Jiandong, Pengda, Greg, Ling, Qi, Xiaoyan, Michelle, David, Meghan, Roberto, Yue, Yuliya, Gaorav, Michael, Mary, Joan, Chris, Huihui, Lingling, Lei, Xinge and many others, you guys are amazing!! Love and support from Bill Kaelin and many of his trainees have been instrumental in this process helping me emotionally as well as from Mingjie’s medical perspectives, with special thanks to Ben and Javid! I also wanted to thank Steve Campbell, Mingjie’s supervisor, who has been tremendously supportive and caring during her sickness. We are so lucky to have such a wonderful support system that has been instrumental in helping us throughout this process.
Life often takes unexpected turns, you never know what expect around the next curve. I am truly thankful that I am still able to hold on to my wife, my children, and my family. In Mingjie’s room at the UNC hospital, there is a whiteboard with the phrase, “Getting to Know You.” On it, we wrote, “She was the sickest one in the hospital and is glad she has made it.” We have nurses and medical team members coming into the room constantly checking on her, impressed and amazed by her recovery from just a couple of weeks ago.
The word “Miracle” has been consistently thrown around during conversations with them. After two weeks staying in the ICU nonstop, a surgical mask constantly covering my face, incessant machine beeping has permanently inked my brain with traumatic memories. On the first night that I was able to finally go home and sleep in my own bed, as I was leaving the ICU room, Mingjie called me over to her side. In a hoarse voice from long intubation, she said to me, “Did I forget to tell you that I love you?” I responded with a gentle kiss on her cheek, “You never did, my love. You never did.”