The Importance of Self-Advocating After Transplant

My daughter, Lauren, didn’t know that having a lung transplant would greatly increase her risk for cancer until it was too late. Her death has taught me how important it is to know the health risks faced after transplant and our need to advocate for ourselves.

| 6 min read
A professional headshot of Gerry Sweeney
Gerry Sweeney
A portrait of Lauren with her husband and three children cuddling in bed.

“I love you more than there are stars in the sky and grains of sand on every beach in the world.” That is how I said goodnight to my daughter, Lauren, as a child — and how I said goodbye. 

From meconium aspiration at birth in 1983, to the last day of her life just before Christmas in 2022, Lauren’s family was with her every baby step and giant leap on the scree-strewn path of cystic fibrosis. We were there before the CF gene had been identified and we were there 39 years later. I knew her CF genomics by heart.

With first-born determination, Lauren never asked, and perhaps never thought, “Why me?” As our family grew to five children, she was the resolute leader, the friend and confidant, the co-conspirator, and advocate for her sisters, brother, and friends. CF was not a part of her identity. She was always Lauren Sweeney without any label. In our hearts, she was a superhero; smart, strong, and beautiful inside and out. As one of her sisters said, “She was everyone’s best friend and she really was. She never traded one friendship for another. You were a friend for life.”

Lauren’s health in grade school and high school was, for the most part, uneventful. She chose University of Southern California for college and thrived in the company of new friends and the excitement, sun, and warmth of Southern California. After graduating, she received a degree in accounting and became a certified public accountant. Along the way, she met a tall and handsome fellow and fell in love. He asked us for our blessing and proposed to her on a tennis court. Their 12th anniversary would have been in May 2023. He was her rock. 

Eventually, Lauren’s health began to decline as she experienced the initial effects of failing lungs. Although she was being treated for CF, as the years passed there had never been much discussion about transplant as a last resort. Within weeks of completing the evaluation process, she experienced a rapid decline and was admitted to intensive care. With her lungs on the brink of complete failure, she underwent an emergency double-lung transplant.

We were overwhelmed with gratitude and excitement about narrowly missing a brush with death. It was as if after 30 years we could finally take a break from the overarching insecurity, constant stress, and pervasive, dream-like fear that a dark and amorphous life-threatening event was just beyond the horizon.

After her transplant, she never went back to her CF care team, nor was she advised to do so by the transplant coordinator or the CF team. Although literally footsteps apart, there was no coordination or communication between the specialists regarding post-transplant care. There was no outreach to Lauren regarding her need for cancer screening due to the toxic effect of immunosuppressant anti-rejection drugs.

I have since learned that it is well known in the medical community that the risk of colorectal cancer is about 20 times higher for people with cystic fibrosis who have had solid organ transplantation. People who have had a transplant are at an increased risk of cancer in general, because the medications they must take to prevent rejection work by weakening the immune system. Despite Lauren’s fastidious attention to her health care regimen, she did not know this. It was never discussed.

The post-transplant decade was action-packed and exciting. Lauren and her husband experienced the miracle of three biological children through surrogacy and the camaraderie and joy of a new neighborhood filled with friends and children. Upon the birth of their third child in August 2022, Lauren declared her family complete and looked forward to launching into the happiest year of her life.

On three occasions in 2022, experiencing abdominal pain, Lauren was treated for small bowel obstructions; the existence of which is in doubt. Perhaps a combination of unrelated conditions were conflated. Regardless, she knew — and her body was telling her — that something was very wrong.

On November 29, she went to the ER of the hospital where she had been continuously treated for more than a decade, spent 36 hours in the ER before being admitted, and was blindsided with a diagnosis, within a day, of stage four terminal metastatic cancer. She died two-and-a-half weeks later. She never went home. She did not have a bowel blockage. She did not have a chance. 

When asked how she purportedly went from 0 to 100 on the cancer scale without being diagnosed and while otherwise being treated, one of her transplant-related doctors said, “She has been on immunosuppressant drugs for almost 10 years and has little ability to fight cancer.” I was stunned by his comment.

Looking back, the question is, if the risk was known, why wasn’t Lauren advised to undergo routine and frequent cancer screening?
 

I suspect that it is due to medical specialties that don’t communicate with each other, let alone collaborate on post-transplant care. I suspect it’s because routine and frequent cancer screening is a cost that is likely unrecoverable through insurance. What I do know is that Lauren was unequivocally entitled to full disclosure and to make her own decisions about her health care, including her options for routine cancer screening regardless of any presumed impediments. 

Lauren is gone but her voice remains loud and clear:

  • Be your own advocate for post-transplant care.
  • Listen to your body — you know it best. Don’t be put off.
  • Don’t be so grateful for your transplant that you stop hearing and understanding transplant risks, as well as the opportunities to reduce them. Explore options for routine cancer screening and follow-through.
  • Do not be silent while others make decisions about your post-transplant health care.
  • Require post-transplant coordination between your CF care team and your transplant team.
  • Schedule post-transplant appointments with your CF care team and consider pulmonology, oncology, and gastroenterology as part of your team.

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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Topics
Care Team | Lung Transplantation
A professional headshot of Gerry Sweeney

Gerry Sweeney recently retired after 42 years as a litigation attorney. He was on the national board of the Cystic Fibrosis Foundation decades ago and chaired several Chicago area CF fundraisers, including tennis tournaments at which Billie Jean King appeared in support of a cure. He is currently on the board of the Undiagnosed Disease Network Foundation, a nonprofit organization which aims to foster partnerships among patients, clinicians, and scientist, to enhance the quality of life of undiagnosed and people with ultra-rare diseases and families. Gerry lives in suburban Chicago with his wife, Lauren‘s mother. You can reach Gerry by email.

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