“I’m more than my diagnosis”

Sabrina Lorenz is a student, speaker, and inclusion activist. And sixteen thousand people either follow her on Instagram or read her online blog. Ever since childhood, Sabrina has had to spend a lot of time thinking about her heart and its workings. She was born with only one functional ventricle – a form of hypoplastic left heart syndrome. 

Roughly one child in every 100 is born with a heart defect, but far fewer have a diagnosis as serious as Sabrina’s. When she was still very young, she had to undergo multiple surgeries that gradually reconfigured her entire cardiovascular system to create a Fontan circulation.

“The procedure made it possible for me to live. What I do with that life now is up to me,” she says. On Instagram you can see the young woman with her scars and doesn’t hide her nasal cannula that supplies her with extra oxygen on some days. She also uses social media to highlight the disadvantages encountered by people with disabilities and chronic illnesses like herself.

She talks frankly about loneliness and melancholy – yet her posts are also encouraging, powerful, and honest. Through her “fragments of living” account, she provides compelling content for her community. For Sabrina, one message counts more than anything: “My illness is present in all areas of my life. And in order to live the kind of life that feels right for me, I want to work with my body, not against it. And I want to be seen as a whole – together with my illness and my needs – and not be reduced to just my condition. I’m more than my diagnosis.”

Sabrina survived thanks to her heart surgeries, but the result isn’t a “normal” cardiovascular system. She cannot physically exert herself, and she has suffered organ damage as a result of insufficient oxygen supply. She can never predict how well she’ll be feeling, and often has to cancel plans because she doesn’t know whether she’ll have enough strength for the day.

“Being chronically ill means constantly having to get used to a new situation. It means that I can’t keep up with my friends, and it forces me to put my needs on hold because sometimes my condition takes up all the space. It’s kind of like a video game: My energy bar drains quickly. Sometimes I have to choose between doing the laundry or cooking, and I have to plan my day according to how much energy I have available,” she explains. “Sometimes I’ve got hardly any energy and I can’t even get up. I’ve had to learn that this doesn’t mean I’ve wasted the day. Now I know that a good day is one when I’m satisfied with myself, no matter how much I got done!”

In Sabrina’s very own video game of life, the coronavirus pandemic has added an extra challenge, because her condition is progressive: “I don’t know if I’ll have very long to live once this is all over.” During the first lockdown, everything felt fine at first. All of her meetings and business appointments moved online, so she didn’t need to make the long trips that quickly drain her energy bar. Working from home, she had the stamina to keep up a conversation just like anyone else. That was a good experience. “But when everyone could start getting together again in the summer of 2020, I felt like I’d been forgotten,” she recalls. 
Sabrina is a high-risk patient, so she had to keep herself out of circulation. “My friends could live their lives again. I had to isolate for a whole year.” Sabrina only began venturing out to meet other people once she was fully vaccinated.

For 18 years, Sabrina could rely on her pediatric cardiologist to guide her through her condition. Since then, she’s been active in the Bundesverband Herzkranke Kinder, an association for children and young people with heart disease. As an adult, she set out in search of new support. “Because my condition is both rare and very complex, I’m now looked after by a lot of different doctors. That means I keep having to explain my situation.” She regularly undergoes a multitude of tests and examinations: MRI, CT, ECG, sonography, blood tests, ergometry, stress tests, oxygen saturation tests, and pulmonary function tests. She sees her cardiologist every six months, a pain specialist every month, a pulmonologist every two months. It takes her just a sentence or two to show the shortcomings of this fragmented system: “My teams are in different cities, but nobody coordinates them for me. I know I’m the expert on my own body, and I’m often the one who has to pass the information around the team.”

Sharing knowledge between the various disciplines has now become a kind of platform video game for Sabrina: “In my case, it’s hard to know if something is a matter of life or death. If a situation diverges from my usual experience, I’m the one who has to make a fast decision.” In these cases, the platform game plays out like this: “First I check all the parameters that I can measure to see if my problem might be cardiological, neurological, or pulmonary. Next, I call my friends so there’s someone there if I keel over. Then I call my doctors and we decide what exactly I should do. I think telehealth support would really take the pressure off me in those situations.” Seamless data transfers between the disciplines would also be a plus: “It would mean I could rely on facts in an emergency, and not just on my feelings.”  

Asked about her plans for the future, Sabrina responds with a combination of facts and feelings: “I have a bucket list and I don’t know if I’ll be able to tick everything off. I now need more new organs than just a new heart, and I’m trying to make organ donation a much bigger topic in our society. I want to finish my degree. I’d love to work as a speaker internationally and see something of the world. Although I can see my body fading, my thoughts and feelings are still here. So I treasure the little moments and I’m looking forward to a birthday party with my friends. We all just get this one life, so we need to make it a happy one.”

Thank you for this powerful interview, Sabrina. We wish you all the very best.
The Siemens Healthineers Editorial Team

(Sabrina Lorenz received financial support from Siemens Healthineers for this collaboration.)

Telehealth connects care teams with patients