Transplant in the Time of Coronavirus

Emma Schmitz avatar

by Emma Schmitz |

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On a beautiful Thursday afternoon late last May, my partner and I took the dogs swimming at our secret spot at a nearby reservoir.

A sailboat gliding across the water made me reminisce about sailing in the San Francisco Bay while growing up. The first time I sailed a 13-foot Laser by myself underneath the Richmond-San Rafael Bridge at age 14, it felt like crossing into another dimension.

I wasn’t thinking about the last time my parents went sailing together, which was right before my mom’s tumor and lung disease were discovered.

I was thinking about the osprey overhead with a catch in her talons, fighting off a bald eagle before landing back at her nest. I was thinking about how secluded we must be to have found a cove under an active osprey nest, and how I loved that warm blanket of detachment from society with the sun shining on my eyelids.

I leaned over to check the time on my phone and saw a voicemail from my mom. She never leaves a voicemail, and rarely ever calls without texting first. (Hello, millennial here.) I saw the transcript of a one-second message before hearing her say, “I got the call.” My body stiffened, then I felt a cold shower of relief.

We had been waiting for “the call” for seven months that would bring news of healthy new lungs for my mom, who had been diagnosed with idiopathic pulmonary fibrosis a year earlier. Before this moment, I hadn’t allowed myself to imagine the future. My brain did me a favor by not allowing me to get my hopes up.

I was elated, but the logistics overwhelmed me. The pandemic had shut down California two months earlier. Elective surgeries, including my mom’s lifesaving one, had been postponed until recently, when there was a lull in hospital activity and her condition became more urgent.

Due to the novel coronavirus, there had been fewer opportunities for organ transplants. Maybe this was because most potential donors were testing positive for the virus, or because traffic accidents were low because people weren’t commuting to work.

But now, the hospitals were quiet, and there was one lung ready for my mom. So, my dad dropped her off at the University of California, San Francisco hospital, per COVID-19 protocols.

I dutifully packed my things and drove from my home in Truckee, California, to San Rafael the next day, Friday, to be with my dad.

Finally able to imagine my mom getting better, thoughts of the future flew around like confetti. I pictured my future wedding dress, the color of a California poppy, and my mom in the first row in elegant indigo. I imagined us hiking up a rolling green hill and eating cheese at the top. I imagined us clinking our glasses together on a bluff overlooking the Pacific Ocean. 

Because of COVID-19, I didn’t hug my dad when I arrived at their house. We didn’t really know what to do at that point. We were still waiting to hear from someone at the hospital. Was my mom in surgery?

We finally managed to talk to her. She most likely would go under sometime after midnight. They wouldn’t know for sure if this whole thing would work until she was on the operating table and they could match the lung up against her like a puzzle piece. My mom was dying, and this lung had to work.

Only one person was allowed to visit her, so my dad went to keep her company. I said I would hold down the fort, but I could barely get a hold on myself. I felt like I was on a precipice, in an airplane with the door open, and someone was telling me to jump, as worry rushed at me like the wind. I broke down.

It was one of those times when you need your mother, but she was the reason why I needed her. I felt helpless, waiting in her kitchen by myself. I imagined my mother unconscious, on a breathing machine, my dad holding her hand. I was spiraling.

And then, one after the other, two of my mom’s best friends called me. How could they have known that I needed them right then? I let myself cry on the phone to them, and it must have been the first time they’d heard me cry since I was a child.

I woke up Saturday morning to an incoherent group text from my mom to our family. I was the first to text back, and she immediately FaceTimed me. She had a breathing tube in. She just stared at me as I strung together words of gratitude.

I had expected to see a ghost, but she looked more alive than she had in the last year, breathing tube and all. For a moment, I felt what it might be like to believe in miracles.

***

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Comments

Diana avatar

Diana

I am so grateful for many people and things; Emma is one. ❤️

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Emma Schmitz avatar

Emma Schmitz

Grateful for you, too, Mom :) <3

Reply
John G Garner avatar

John G Garner

Thank you Emma for telling us about your mother. I hope she is doing good with her new lungs.
I have a question for others. Emma said her mother had been diagnosed with IPF a year earlier. Is it common to be in need of a lung transplant a year after being diagnosed with IPF? I have only been diagnosed about 7 months with IPF but I don't have severe symptoms. I am still trying to fully understand IPF. Thank you.

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Emma Schmitz avatar

Emma Schmitz

Thank you for reading, John! I believe my mom's condition declined rapidly relative to other IPF patients, and that's why they decided she needed a transplant. I hope someone else can give you a better answer. UCSF's IPF website has a lot of great information, too! You are not alone! https://www.ucsfhealth.org/conditions/idiopathic-pulmonary-fibrosis

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Carl avatar

Carl

John, I was diagnosed in Oct 2011 and had eight years of travel, tennis and good life before needing oxygen. I was on OFEV from 2016 until my transplant in 2020 so it is possible to beat the 5 year average mortality with good luck.

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Carolyn avatar

Carolyn

My story is so similar to yours John. I’ve just been accepted on the transplant list. So pleased to read your comments.

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Carolyn avatar

Carolyn

Sorry I meant Carl.

Reply
Carl avatar

Carl

I too was transplanted at UCSF during Covid in June 2020. There were 13 lung transplant patients awaiting or recovering at that hospital during my two month stay. I was transported by ground ambulance on a twelve hour drive from Oregon because my oxygen needs had got so great and could not fly.
They didn’t find the right set of lungs for me for over 3 weeks and I was in the ICU for 4 weeks after the 12 hour operation. My wife drove down and my adult children each came to give her support before, during and after the operation and it was incredibly important and helpful to relieve her stress. We stayed in a residence inn in So SF for over 2 months after my discharge and then experienced the smoke from wildfires surrounding the greater Bay Area. Fortunately the Covid activity abated in SF during my 4 months there and it is better here in OR. We were so blessed to have love and support while in SF from family,friends,neighbors who sent cards and care packages, phone calls and zooms during our time there. So much gratitude to the donor family and fabulous medical team at UCSF! I am doing very well 6 months out now.

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Emma Schmitz avatar

Emma Schmitz

Thank you for sharing your story, Carl. It shows that each transplant story is scary, memorable, and amazing in its own way. So glad UCSF was able to help you and your family! They are awesome. Good luck to you!

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Maka Rebagliati avatar

Maka Rebagliati

Thank you Emma for sharing your mum’s story. My husband Doug is awaiting a transplant here in Toronto Canada, he is in the hospital, his IPF too advanced for him to be at home. Thankfully the hospital allows me 2 visits a week, 4 hours each. At this stage it is so good for me to hear success stories. All the best to your mum!

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Emma Schmitz avatar

Emma Schmitz

Support groups and stories have helped my mom get through her hard times, too. They're so important. Thank you and may Doug get his new lungs soon!

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Joseph Nocerino avatar

Joseph Nocerino

Thanks for you story Carl. I am awaiting a consultation with Johns Hopkin's staff to see if I am eligible for a 2-ling transplant.

A little scared and a little anxious.

Reply
RJ avatar

RJ

Emma, It was interesting to hear a daughters perspective of her mother's transplant.
My IPF diagnoses in March 2018 came out of the blue. I had to actually look up what it was. In March 2020, I was put on 24/7 oxygen and immediately evaluated for a double lung transplant. End of May, in the middle of raging Covid I received the call at 1:30am on a dark and stormy night and offered a transplant - A single lung. No family was allowed to see me during the scariest moments of my life but thankfully I was discharged in 8 days with a life altering gift of life. Credit for my recovery goes to my amazing team of doctors, and the support and care from my family and best friend and to the fact that I worked out --- oxygen tubes and all, till the night I got that life altering call. As my wonderful Pulmonologist advised, the healthier you go in, the stronger you walk out.
I hope to be one of those long time survivors, sharing my journey with others going through this same trial.
For those of you waiting for a transplant, please stay positive and work on being as strong and healthy as you can. It will help a long ways in your recovery.

Reply
Emma Schmitz avatar

Emma Schmitz

RJ, thank you for sharing. Such a scary time but it's inspiring to experience the care and support of doctors and family! May you have many more healthy years!

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Carolyn avatar

Carolyn

Thanks everyone for your stories. I was diagnosed in 2011 and have just been listed for transplant. So encouraging reading your experiences. I’m so glad I found this page.

Reply
Emma Schmitz avatar

Emma Schmitz

Thanks for reading, Carolyn! Glad you found the page, too :)

Reply
diana avatar

diana

I am so grateful for all your replies to Emma's recount and our story. It has been an amazing journey with high peaks and low valleys. It is okay to be frightened, but please know your doctors want you to live, and more importantly have excellent quality of life. That is key, so before transplant, please exercise, no matter how little or how short - keep moving. Breathe as much as you can, even while on O2 - the body can forget how, and it's imperative that you practice for the big day - the day you get new lungs. I pray all who need them, receive them. And if you are offered only one lung, like me, accept. Once you receive your gift, do exercise. That is vital for strength and healing. Lastly, please be sure to surround yourself with folks who love and cherish you, even if its through zoom or facetime; it helps you to be brave through the process.

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