30 Days of PH: Surviving PH and Carey Fineman Ziter Syndrome

by Colleen Steele | November 25, 2020

Day 25 of 30 Days of PH⁣
Topic: Surviving PH and Carey Fineman Ziter Syndrome

This is Cody’s Story @cody_da_man

My PH story is similar to other patients, but I am also extremely different from the rest. My sister and I are the first two cases in the world with Carey Fineman Ziter Syndrome (CFZ).

Tonya is 18 years older than I am. When she was born in the early 1960s, doctors had no idea what was responsible for her many medical issues. Then when I showed up almost two decades later, as almost an exact replica of Tonya, doctors thought there might be more to it. We were the only two cases ever documented or even known to have CFZ until 2015. With the advancements in science, they were able to figure out what gene is responsible for our syndrome and have been able to identify approximately 13 others with it from all over the world.

In 1998, I was living in Las Vegas, Nevada. My family was still in Salt Lake City, Utah, and I received a message from them to call home. When I did, I found out that Tonya was in the hospital struggling to breathe. At that time, they did not know a lot about PH. There wasn’t much they could do for her other than to give her supplemental oxygen. I called her immediately and had a conversation that stuck with me forever. She explained exactly how she felt physically, emotionally, and spiritually. She passed away two weeks later.

In 2013, I started to experience breathing issues. Over the next few months, they got so bad that I couldn’t sleep unless I was sitting straight up. I realized that these were similar symptoms to what Tonya experienced and had explained them to me during that call.

Because of the conversations I had with Tonya, I knew what questions to keep asking. Finally, I was referred to an amazing doctor who understood what I was going through and did the proper testing.

In October 2014, I was diagnosed with Pulmonary Arterial Hypertension (PAH) and am able to keep it under control with just one medication. Because of my sister’s experiences, I have been able to live beyond anyone’s wildest dreams. Tonya opened the doors so I could walk through them. Because of her, I am still alive. I hope to be able to do the same for others.

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About the Author

Colleen Steele Colleen Steele was born and raised in New Jersey, and received a bachelor of arts in English from Immaculata University in 1994. She lives in Washington state with her husband and two sons. Her oldest child was diagnosed with idiopathic pulmonary arterial hypertension when he was 8. At 14, he received a heart and double-lung transplant. Colleen’s love for writing, experience advocating for her son, and determination to spread PH awareness inspired her to become a columnist and forums moderator for Pulmonary Hypertension News in 2019. In her column, “Life as a Caregiver,” Colleen is open and honest about caring for her son, his PH experiences, and life post-transplant. It is her ambition to educate and inspire others facing similar challenges.