Rumination on the Inseparable Dualities of Chronic Progressive Illness

The path to lung transplant is different for everyone, depending on their disease and how it progresses. My mom got very sick very fast. I found out that she would try to get listed, and 10 stressful weeks later, she had new lungs. What may be an extended course over several years for some was for us more like a chaotic roller coaster ride that we didn’t know we were on until we were plunging from the first peak.

My mom had been mostly healthy just one month before she was flown to the University of California, San Francisco via medevac. Her doctors had not even begun the testing to get her on the transplant list. Her first month in the ICU included a mix of life-saving procedures and frantic attempts to complete the long list of tests required for listing. It was a terrifying, yet hopeful, time.

There is almost no such thing as purely good or bad news when waiting for a lung transplant. It is a delicate balancing act simply to get on the list. The patient must be sick enough to need the transplant, but healthy enough to survive the wait for new organs. On one hand, life is fragile; on the other, humans are resilient.

For being such an extreme journey, the facts presented along the way seemed to have a duality such that I never had an extreme reaction. Every piece of good news was laced with bad, and every piece of bad news had a silver lining.

The diagnosis of idiopathic pulmonary fibrosis is both bad and good. The advanced stage of this disease is terminal: It can be treated with a lung transplant. It’s horrible. There’s hope.

A lung transplant will get rid of diseased lungs, but the patient will be chronically immunosuppressed. The post-transplant medication regimen is known to be successful at stalling the initiation of organ rejection, but the medications can have horrible side effects. The risks and consequences of this treatment must be understood and accepted. Knowing them is as important as maintaining optimism for prolonged life.

I felt the balance oscillate every day that led up to my mom’s transplant. She’s sick enough to be in the ICU, but the ICU has the most specialized and dedicated care. A tracheostomy will help control her lung function, but she won’t be able to speak. This medication will really help X, yet the same medication will really harm Y. Every detail demanded awareness.

While it is frustrating to feel like nothing is concrete when a loved one’s life is at risk, I think the ambivalence helped me keep an emotional even keel. I couldn’t get too hung up on a failed test because I knew it meant that the doctors were directing their attention to the root of whatever caused it. I also couldn’t allow myself to fully ride the high of good news because I knew that there were a hundred things that could go wrong between good news and new lungs.

Even now, several months into my mom’s second life, I have to keep myself in check. In spite of setbacks and complications, everything has worked out basically as well as it could have. My mom was on the verge of death, and now she is alive and breathing well. I call that a success. I celebrate our good fortune, but I also know how different it could have been, and how quickly things can still change.

That fact is returned to me now, tenfold. The very moment that I finished typing the last paragraph, I got a message from the columns staff that my colleague Kim Fredrickson had succumbed to pulmonary fibrosis. The weight and timing of this news are not lost on me.

My mom and Kim were waiting for new lungs in the same ICU — their stays even overlapped. They lived right down the hall from each other for seven weeks, but I didn’t know that then. The same doctors treated them; the same nurses and respiratory therapists cared for them. Their stories were similar in many ways but their paths never actually crossed.

I only knew Kim from her column here at Pulmonary Fibrosis News and a handful of messages we exchanged, but I feel her loss in a strange, aching way. She touched so many lives, and those people will continue to send her light, to carry her memory, and to love her beyond this life. She gave the world much good, and I can only hope it was returned to her in her darkest hours — a silver lining, a luminous beacon to guide her home.

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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 Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.