Navigating the Emotions of Chronic Lung Rejection

Being diagnosed with chronic lung rejection was devastating. However, maintaining hope and a positive mindset helped me look forward to the future and smile again.

April 9, 2024 | 7 min read
Headshot of Inka Nisinbaum
Inka Nisinbaum
Inka standing at the finish line of her marathon with her arms out wide

It was in 2019 when I received my second death sentence — the first time it was called CF, this time it was called chronic lung rejection. 

I received lung and liver transplants in December 2002 due to cystic fibrosis. Up until 2019, I believed I’d live forever; I was that healthy. But then I lost lung function, and about one liter of my forced expiratory volume (FEV1) was gone; there was nothing my doctors or I could do to get it back. A high dosage of prednisone — nothing. Topped with high dosages of antibiotics — nothing. A bronchoscopy was done and again — nothing. There was no fungus, no virus, nor any other nasty bacteria to be found in my lungs, which is why my doctors concluded I was suffering from chronic lung rejection

I felt like the world was pulled out from under me. Everything felt numb — my limbs, my body, my brain. How could I have a chronic rejection when everything had been fine only a few weeks ago? How could I have possibly gone from exceptionally healthy to chronically not healthy? And then the phrasing in itself: CHRONIC lung rejection. Chronic as in no hope, no cure, no escaping it. Chronic, just like CF. There was only one thing left to do: cry.

Of course, even with the diagnosis of chronic lung rejection, one doesn’t have to choose a coffin right away. There is treatment available but it’s not a cure; the treatment is meant to stop the loss of lung function, to make sure the patient has enough lung function left to be able to survive. I jumped at that treatment, desperately hanging onto it as if it was my last straw. My son was 5 years old back then. I was ready to do anything to spend more time with him. If the treatment could stop my decline in lung function, maybe I could keep living for a few more years. Maybe. It was worth a shot.

I got an appointment for my treatment right away. I’d have to go to the hospital, stay there for about two to three days, and hope for the best. I was grateful for this chance, but still felt incredibly helpless. What is there to do when faced with the word chronic? I didn’t want to just sit around and wait for fate to decide. I wanted to do something to help stop this. But what?

My husband was the one who got me back on track. He reminded me that cystic fibrosis is also a chronic condition, but it never stopped me from actively fighting it. My main weapon to fight CF had always been running. I was a cross-country runner before my transplant, coughing out all the nasty phlegm while racing in 5K and 10K competitions. Even after my transplant I kept running to help keep my lungs and myself strong, resilient, and healthy. But was it even possible to run with chronic lung rejection? There was only one way to find out.

Before I went to the hospital for my treatment, I signed up for a half-marathon, that same fall, six months away. 

Was it a crazy idea? Yes. 
Did I believe it would work? No. 

But as crazy as this idea might have been, it gave me back two things: control and hope. I wasn’t a helpless victim anymore; I was the one in control. I was the one who had a plan, a mission — something to do other than cry. I felt amazing, until I started running.

I started my half-marathon training when I was still in the hospital. Running around the campus, PICC line dangling from my arm, gasping for breath. It was NOT FUN. In the beginning I was only able to run/jog for one minute, then I had to walk to catch my breath and run the next minute. 

The treatment worked, my lung function stabilized and week after week I was able to run five minutes, then ten, a mile…until September 29, 2019, when I crossed the finish line of my half-marathon. My time: 2:30:22. My emotion: Tears. 
 

Overall, it took me about a year to get all my lung function back. To this day, I’m not 100% sure I truly had chronic rejection. Maybe I didn’t; maybe my doctors were wrong; I will never know. But one thing I learned from this experience: a positive mind and maintaining hope made all the difference to me. A positive mind couldn’t change the reality I was faced with, but it changed my perception of it. Finding the silver lining enabled me to be active about it, to look forward, hope, and smile again.  

There are many ways to train a positive mind. Here are my tips: 

  • Create a gratitude journal: No matter how bad the situation might be, there’s always something to be grateful for and to make you smile. Even small things like a delicious pizza, covered in bubbling cheese, with a side of 15 Creon® capsules
  • Spend time with positive people: It is always helpful to consult with those who can see the silver lining themselves. In my case, it was my husband. He sounded delusional when he suggested a half-marathon, but his unreal belief in a good outcome lifted me up enough to give it a try.
  • Find a way to be active: It always helps me to find a way to fight whatever is thrown at me. Not all my fights have been successful. I ran thousands of miles to keep my CF lungs breathing, only to lose that fight at the age of 23. But even though I lost, I always felt hopeful with every mile I ran. 
  • Reframe negative thoughts: This one is the most difficult. All of us are prone to negative thinking. It’s just so much easier to dwell in negativity than to conjure up a positive mindset. But no matter how negative the situation is, it is not helpful to drown in it. Negativity attracts negativity, attracts negativity. Finding the silver lining will break that cycle. The situation itself won’t change because of it, but you will gain an open mind to do something about it -- to get active and feel less helpless; and to find joy again. And that’s what it’s all about in the end: to enjoy the ride.

Interested in sharing your story? The CF Community Blog wants to hear from you.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Emotional Wellness
Headshot of Inka Nisinbaum

Inka Nisinbaum is originally from Germany and has been living in the U.S. since 2009, right now in Denver, Colorado. Inka was only 2 days old when she was diagnosed with cystic fibrosis. In December 2002, at the age of 23, she received double-lung and liver transplants in Hannover, Germany. Inka holds a master’s degree in psychology from the Heinrich-Heine University in Düsseldorf, Germany. She is a published author in Germany, always writing, always reading, and often “forcing” her husband and 10-year-old son to go hiking with her. Inka only just started to be involved with the CF Foundation, but she is excited to see where the journey will lead her to. If you want to follow Inka’s daily practice of gratefulness, you can connect with her via Instagram.

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