Karin Hehenberger possesses exactly the right qualifications to create an online patient platform for transplant recipients.
- She herself received two organ transplants – a kidney and pancreas.
- She’s a medical doctor.
- She knows that receiving a transplant is as much an emotional journey as it is a medical one.
Earlier this year, CSL Behring joined with Lyfebulb, the company Hehenberger founded, to create TransplantLyfe, a patient community platform. The site offers resources, a find-a-friend option and forums where patients can discuss the process of waiting for an organ, receiving one in transplant surgery and returning to regular life.
We asked Hehenberger about why peer-to-peer communication is so important for transplant recipients:
Being a transplant recipient means having a life-long condition requiring attention and medical care. When did you first realize the emotional aspect was not being tended to?
I was never unaware of the enormous burden an organ transplant has on the psyche as well as on the body. As an individual used to fighting for pretty much everything in my life, I see this as just another chapter, and I have yet to really relax. I believe the moment I do, I will die.
I saw your blog post about trouble with anti-rejection medications causing digestive upset. What is the impact of being able to talk about these nitty-gritty, quality-of-life issues with others going through the same thing?
The difference now is that my specific issues do not seem so odd, or different, since pretty much everyone on TransplantLyfe is suffering from side effects in some way. It makes me even more determined to advocate and work toward better treatments and cures. I also appreciate being able to assemble a larger data group behind my n=1 experience.
Is there a post or an exchange that you’ve seen on TransplantLyfe that exemplifies what the community can do at its very best?
I really like when the community comes together and showcases compassion and energy behind a specific topic, such as when someone feels like an outcast. So, for me, it is less about the physical issues and more about the emotional issues. This recent exchange on the TransplantLyfe discussion board really speaks to me: “Your message brought tears to my eyes. My highs are high and my lows are weird and low. I feel lost in my identity a bit because the majority of my life I was the diabetic. Now I am....not? I don't even know. It’s very odd. Good. But odd and hard to explain to outsiders :).”
If you had to explain the TransplantLyfe community to someone in just a couple sentences, how would you describe it? For someone who is new to the concept, why should they consider joining?
I’d say TransplantLyfe is a safe, like-minded, digital community of people affected by organ transplants, who are brought together to share experiences, learn from and teach each other, with the goal to improve their own and others’ lives.
Long-term, what do you hope the community will accomplish?
Improved outcomes for patients and care givers, both physically and mentally. Additionally, more information and data about long term management of organ transplants for the industry should lead to better understanding and yield new treatments and solutions.
Anything else you would like to add?
TransplantLyfe is here to stay – it will grow and evolve with the patients and care givers who join. The goal is to be nimble and create new products as we identify the need and sometimes even before that need has been expressed!