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LUNG FORCE Heroes

Sean Keoni C.

My mother was first diagnosed with Adenocarcinoma back in late 2013. Although she had been a smoker, she had quit about five years prior to her diagnosis. After a few appointments with an Oncologist, it was determined that she would have surgery to remove the upper lobe of one of her lungs where the cancer cells were located. So, on January 1st of the next year, she had the surgery. During the surgery the cells were also found in a lymph node near her heart. It was impossible to remove this due to its proximity to her heart so, once she healed from the surgery, she began chemotherapy followed by radiation treatments.

Due to the flexibility of my career as a Flight Attendant, I was able to take care of my mom (take her to her treatments, etc.). She and one of my sisters live upstairs from me so that made it even easier. Her treatment lasted for about a year. After this was done it was announced that she was in remission. That was a HUGE relief for all of us. Especially because, due to my mom’s age, the treatments took a huge toll on her both physically and emotionally. She lost her appetite and lost a lot of weight; her energy levels dropped considerably; and she just felt sick all the time. There would be times when we would be driving to her treatment and she would say to me that “she’s done” and wanted to stop. We would then have a deep, heart to heart conversation about life and remind her how much her grandkids meant to her and how much she wanted to be around for them.

So once again, after she was deemed to be in remission, life went on as usual. That is, until December of 2015. That year I had been complaining of a dry cough that wouldn’t go away. Fast forward to October of that year, I went to see a new doctor who ran a few tests (X-ray and CT scan) as well as went over my family’s medical history. I told him about my mom's bout with cancer, as well as how my dad had passed away back in the early 80s of an interstitial lung disease. A week later he called me and set up an appointment to see a Pulmonologist.

After going through a few tests with him (6 minute walk test and various pulmonary function tests), and reviewing the results of my CT Scan, I was diagnosed with a terminal lung disease...Idiopathic Pulmonary Fibrosis. I was not a smoker or drinker nor did I do drugs of any sort. Yet, at this point, I was given two to five years to live.

My Pulmonologist put me on a specific medication that had only been approved by the FDA  a year earlier, and was determined to slow down the growth of the scar tissue in the lungs that caused the disease. So I went on “life as usual” as I didn’t feel sick. I focused on living the best life possible. I even continued to work full time. My pulmonologist and I discussed options that I had in addition to taking the medication. Lung transplantation was that option. The difficult part though was that these types of transplants aren’t performed in Hawaii. I would eventually have to find a transplant center on the continent that I felt comfortable with. Besides being able to accept my health insurance, this center also has to be within reasonable distance to my family. Basically because I would have to live within a two hour driving radius of the hospital. This is both before and after transplantation.

In the meantime, my mother's cancer came back. This time her treatment wasn’t that bad, as she was able to go in immunotherapy rather than chemotherapy. She had no side effects and continued to eat normally. And although I was battling my own terminal illness, I continued to be her primary caretaker, taking her to her bi-monthly treatments. I began doing some research the summer of 2018 for the possibility of finding a transplant facility for myself. Although the disease had progressed a little, I was still too healthy to be put on a transplant list.

Fast forward to September of 2018. I went to Los Angeles with a good friend to celebrate my birthday at Disneyland. We never made it to the park. The second day we were there my health went downhill real quickly. I was admitted to a hospital in Orange, California. They thought I was getting stable, but I flatlined twice on my fifth day there. That hospital gave up and told my family and friends to let others know it was time to say goodbye to me. They said no, reached out to my doctors in Hawaii, who reached out to other hospitals.

Finally, UCLA Medical decided to take me later that day. So they brought a team of specialists down to the hospital I was in and performed life saving surgery in my hospital room before transporting me to UCLA. They hooked me up to an ECMO machine, stabilized me, got me stronger, put me on the transplant list on October 9th, and I got my transplant (double lung and kidney) on October 26th. I ended up going through Renal failure due to the two flatlining incidences.

I stayed up in LA with my niece and her husband after being discharged on November 7th. I was given the green light to move back home on February 25th. I’ve been home in the islands ever since. I go back and forth to LA every two months for follow-up appointments. In the meantime, in May of 2018, my mothers cancer progressed a bit more and was no longer qualified for immunotherapy. She had to go back on chemotherapy. Luckily it’s a lower dose and she doesn’t get the side effects like she had during her first chemotherapy treatments.

Since I’ve been back to the islands, I’m still not back to work yet. So again, in addition to adjusting to my new life with two new lungs and a new kidney, I’m continuing to be my mom’s main caretaker. I take her to her treatments every three weeks and take care of her on a daily basis. Because I have to do a lot of walking for my own exercise, I take her with me and we get our laps in at the mall, where it’s cooler and easier to move around. We’re also both doing Soundwave Therapy which has helped tremendously with side effects that both she and I are experiencing.

For as long as I am able, I will continue to be her caretaker. In some of our conversations, she has mentioned to me how she doesn’t want to be a burden on me or my family. I reminded her that in our Hawaiian culture, it is our duty to take care of our elders, or Kūpuna as they are known in our native language. She used to tell me stories of how she was always the responsible one who was called upon to take care of her aging family members before. In fact, when her grandfather was about to pass, her aunt called her and told her that he had been asking for her. At the time she just moved to California to try and make a life for herself at the age of 19. She didn’t hesitate to come back home and take care of him, mainly because she knew it was her responsibility. She always told me that when it comes to our family, always honor those who came before us for they are the ones who have paved the path for us in life. When she wanted to give up, I had to remind her of this. I tell her that now SHE is a Kūpuna, and well loved and respected within our family. It is my HONOR and PRIVILEGE to continue the family tradition of taking care of those who paved the path for me. And even though I am dealing with my own life’s challenges, I will continue to do so for as long as I am able. I am forever grateful, humbled and blessed to do so.

First published: December 13, 2019

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