Using My Voice to Help Improve Lung Transplantation

My experience with complications after lung transplantation led me to join a group that is trying to make it better.

June 15, 2017 | 4 min read
Fanny Vlahos

I was mildly affected with CF growing up. It rarely interfered with me having a “normal” childhood (I HATE that word, by the way). For me, illness does not equal weakness, but I know how society treats those who are ill.

I am not "that sick girl with CF." Or, “that girl who had a lung transplant.” Nope. I am Fanny. I am a daughter, sister, friend, attorney, volunteer, wife and -- most important -- a mother, who happens to have a mutated gene. Got it?!

Everything was hunky-dory until the end of my second trimester of pregnancy. Then, the proverbial floor fell out from under me, and I went from a happy, healthy pregnant woman to receiving a double lung transplant in 14 months.

I was going through my own emotional and spiritual hell, but my medical team had a game plan. They took (and continue to take) great care of me. I was transplanted and my new life began. But whoa, whoa … not without complications.

Seven months post-transplant I started experiencing excruciating gastrointestinal (GI) pain. And, I really could go on for pages (should I?!) but here's the gist of it all: the immunosuppressant drugs (drugs that prevent rejection) that I was taking were SO toxic that they damn near killed me. Months of weekly labs, procedures, appointments, tests, and so many drugs resulted in me being misdiagnosed with Crohn's disease. Nothing was working, so they kept increasing drug doses. The pain kept getting worse, so I became my own advocate and sought out one of the most renowned GI physicians in the nation.

Guess what? I didn't have Crohn's. I had massive, baseball-size ulcers that were literally eating away my insides. I had surgeries, the first to remove two-thirds of my stomach; the second to remove parts of my colon, large and small intestines, and appendix. I didn't eat food for seven months. After very lengthy hospital stays, misdiagnoses, drugs, such invasive tests that my body was beginning to shut down at the mere prep for those tests, having lost all of my hair, being told I may not eat again, or I'd need to wear a colostomy bag for the rest of my life, I made a full recovery. From the beginning of my gut pain to having fully recovered from my surgeries was about 14 months. Should I go to Vegas and put all my money on the number 14?!

Going through the respiratory issues and enduring a lung transplant was such a horrifying time in my life. But, we had a game plan. My medical team was on top of my infections, my lung functions, my vitals, etc. If I died while waiting, at least it wouldn't have been a surprise to anyone. With the GI complications though, all bets were off. No one knew what the hell to do with me, initially. No one could compile a playbook because we don't know enough about the lung transplantation process and the complications that could follow.

The uncertainty of it all was what made that time way more difficult for me to handle than the respiratory situation. Sure, I'm a control freak and maybe that's what made the unknown so terrifying. I had no idea what was going to happen to me for several months and neither did my medical team. That was my hell. I needed to bounce back, so here I am. I have a little boy who is my everything, and he needs to know that I fought through it all just because he deserves to have a mom.

And that brings me full circle to my purpose: I want to use my voice to help others. There's no turning back now, so I jumped right in. I am currently involved with the CF Foundation and serving on a Steering Committee to create practices to guide CF lung transplantation. The hope is to spare others from some of the uncertainties that I faced. I am honored and so excited to work with such esteemed medical professionals on such a venture.

So, there you have it: that's my truth. What's yours?

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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Fanny Vlahos underwent a double lung transplant in May 2009. She holds degrees in English language and literature and American and Canadian law.

Fanny has recently dedicated her time and efforts to inspiring others through her blog, through which she encourages people to embrace their authentic selves and promote organ donation. She is committed to affecting change in health care policy.

Born in Canada to Greek immigrant parents, Fanny now lives in the Chicago area with her spouse of nine years and her son, who is truly the love of her life.

Follow Fanny on Facebook, and on Twitter.

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