My mom got a double lung transplant during covid.

My mom got a double lung transplant during covid. 

Back in 2017 after my mom was hospitalized due to worsening pulmonary fibrosis, we made the call she would try to get new lungs. This meant leaving Hawai’i, our home and our family. The fact that my sister had just moved next door with her three children a fews weeks before made it even harder to leave. It had been a long road to coming to this decision and at that time it had been about 25 years of her progressively getting sicker and sicker. Due to a tragic accident during my birth via cesarean, my mom’s lower bowel was unknowing cut and left open. She had felt uncomfortable after the birth but no one knew the storm that was to come. After a few days she suddenly went septic and her lungs started to fail. They intubated her, placed her in a coma and put on a ventilator. You can read her full story on her blog but I’ll summarize it for you here. During this time she had countless surgeries, x-rays and procedures done to save her life. She even broke the hospital record for the most chest tubes placed at one time (8). And like a miracle, she slowly healed and came back to life. She had to relearn how to breathe, to talk, and to walk. But she persisted and with her faith, eventually, miraculously, moved to a rehab facility and then eventually come home 4 months later.

So the thought of a lung transplant was both a joyous thing and a complex thing. She had gone through the healing process before and knew the strength it would take, and after so many years of sickness, she knew how much she would have to fight. I want to note something important about my mom. If you met her you, would never know all the struggle and pain she has gone through. She is a bright shining light of love and hope. A truly selfless person even when she is in pain. 

I had grown up seeing the scars that ran down her abdomen. I used to lay my head on her stomach giggling at her lack of a bellybutton not realizing that since she had so many abdomen surgeries, they had to cut through her stomach so many times so that the scars went right through the area where it used to be. I never questioned why she had oxygen attached to a trach in all of my baby photos or thought twice about how she had boxes of medical files in our storage closet. Isn’t that normal? It wasn’t until an Easter service when I was in high school where she gave her testimony did I hear the full story. I think she didn’t want me to feel bad that this all happened during my birth, she had moved on in her life and didn’t want to dwell on a traumatic experience for her and my whole family. Regardless, it wasn’t until that moment did I fully understand that she had been on this journey of illness for my whole life.

A few years after my birth, she had been able to get off of oxygen, remove the tracheostomy, and have a relatively “normal” life. I don’t think she once complained about the shortness of breath she must have had. Then when I was in high school, she got diagnosed with breast cancer and after radiation treatments for cancer damaged her lungs, she was diagnosed with pulmonary fibrosis. Shortly after that she needed to be on oxygen during activity, then oxygen 24/7, then pressure support at night as well. During this time she also got pneumonia in her lungs which she continued to fight for over 4 years. This all leads up to her transplant story so when I say it had been a journey, it had been a crazy wild ride.

There is a lot more that happened during the years of 2014-2019 but 2020 marked a new chapter in the story. She got a double lung transplant on March 12th at 2:00 am. It was a difficult surgery performed by the head of the cardiothoracic department, Dr. Ardehali. We knew the risks of the transplant and knew that her recovery wouldn’t be a typical 7-12 days then back to home like many lung transplants. During surgery, they had discovered that the large tennis ball sized cavity in her collapsed left lung had been full of mold and dying tissue. Due to the intense scaring and bleeding they could only remove as much as they could and treat the cavity with antifungals post-transplant. It would be a long road to recovery and we all hoped her body would accept the new lungs. 

Mom on her way into surgery - March 11th 2020

Trying to get some sleep in the waiting room.

Now this was mid March. We had all been hyper aware of this scary sickness called “corona virus” and worried about how this might effect my mom but had no clue as to how the world would change in a first few weeks. Once she was out of surgery we were able to see her, hold her hand and keep her company as she slowly woke up from the medications. She had so many tubes coming out of her and nurses constantly giving her medication, checking her vitals it was a constant dance of trying to keep out of the way. I wrote what happened in detail as it happened on this blog.

About 2 days after her surgery the hospital initiated a no visitor policy and understandably, we were not allowed to be there with her. We all sat at home trying to figure out how to navigate this new circumstance. I think we all went through this once Covid hit the world. How do we stay in touch? How can we advocate for her if we are not in the room? What happens if she needs us but can’t communicate? The never-ending list of fears and hurdles filled my head. How do we move forward? 

The next few days were really touch and go, my mom’s condition got better, then worsened, than got better and so on. I called the nurses almost every hour even in the night to check on her and the doctors gave me updates every shift. I have to say that the nurses at UCLA are some of the most amazing and kind people in this world. On top of keeping my mom and the other patients alive, they always gave me updates and took my calls despite their very busy shifts. I can’t express my gratitude enough for them. 

During those 134 days, 120 of them my mom was alone in the ICU. She was intubated and on a ventilator unable to talk and mostly unable to write due to the medication and weakened muscles. So we lived on FaceTime. The nurses propped up her iPad so we could sit with her day and night. This was our new normal. It was hard seeing her go through so much pain and not being able to hold her hand, but the entire time she kept telling us “God’s got this”. She never gave up so we never did either. Our family and friends came together with love, prayer, and constantly sent messages of support. 

After four months, I was able to visit her was able to get my first hospital visitor pass. We had been cleared by the hospital since we had been isolating in our apartment for months. It was so strange to see the once-bustling hospital quiet and mostly empty except for staff. I think I was one of the first visitors to the ICU she was in and remember coating myself in hand sanitizer before entering the floor. It was a great day and we decorated the ICU room with photos and messages of love. Eventually, the walls would be completely filled with photos and colorful paper flowers we made together. The nurses would tell me that mom’s room was the most peaceful icu room and they would come to look at the photos and enjoy the essential oils being diffused. 

It’s incredible how quickly you adjust to changes in life. I got so used to the daily ritual of waiting in line 6 feet apart from other visitors, getting my visitor pass, and awkwardly avoiding people in the hallway as we all played the game of dodge the humans. My stepdad and my cousin Shannon and I had our weekly rotation of who would get to visit the hospital. And the weeks went by. Not easily but they did. After many more surgeries and turns for the worse then turns for the better and then turns for the worse and then turns for the better again, my mom was able to come home to heal, still on oxygen attached to her trach (this is the third time she has had this) and using a ventilator at night. She came out of the hospital to a new world. 

This story ends happily. My mom is now off of oxygen and slowly getting off of the ventilator at night. She is able to talk and was just cleared last Thursday to eat solid food. Next month we talk about taking her trach out which would be a huge milestone in her recovery. It’s been a long road full of many ups and many many downs but through it all, she has lived her motto of “be kind and smile often”. December 12th marked 9 months since she revived her new lungs and I want to thank everyone at UCLA Ronald Regan hospital, the ICU staff, and the transplant team. I also want to thank her donor family who graciously gave our family the gift of life as they lost someone they loved. 

I would like to urge you to become an organ donor if you haven’t. Link here: https://www.donatelife.net/register/ Our family has had 9 amazing months filled with love, watching sunsets, and hope thanks to the gift of organ donation.

While 2020 has been a year we will never forget, it will also be one we remember as the year mom got new lungs and a chance to live again. Sending you love and light from LA.

Taryn