LHFA
So as you might know I have been back home to Lithuania since 2018 August and since February 2019 I was elected as a new President for Lithuanian Heart Failure Association.
After the diagnosis of Heart Failure in 2016 in Dubai, I strongly knew I want to share the story what happened with me. Especially that my heart failure was miss diagnosed, because I did not fit into standard frame of heart failure patient. Who would think of healthy, had no comorbidity, young and energetic can end up with end stage of heart failure. It seems I would always find the way to be occupied with other matters rather than listening to myself and move forward with the ideas I generate. Still remember my post from Italy, when year later I shared the instagram post talking about the illness I was carrying. Recovering after initial diagnosis and my life falling apart ( imagine the tower tarot card ) I have put away that idea of sharing my story. Have to agree even then my knowledge about heart failure was minimal and telling people around I have it, their response was “you are pretending”, “ I have weak heart too and I live 10 years like this” “happens often” and bla bla. After feedback like this it came to my understanding that my diagnose was no big deal and no special or unique, so by sharing it, I wouldn’t really make a difference.
When in 2018 I was sitting in front of 10 best Lithuanian surgeons, cardiologists, anaesthesiologists in the consilium, which one of them said “you need a heart transplant” and slowly going through the emotions and life at the time I was dealing. Whilst looking for people with LVAD and transplant, searching for individuals who I can reach out and ask. How are you feeling now? Momentarily I knew, I can share my story and talk about HF without taboo or feeling thats not serious enough.
Even before and after LVAD surgery whilst staying in the hospital the message has been spread in between health care specialists that there is a person who is young, driven and keen to talk about HF experience and is willingly encourage and help others. After the hospital stay and rehab, immediately my phone rang with a request to arrange an online meeting in regards to an opportunity to run Lithuanian Heart Failure Association.
The meeting was success.
Lithuanian Heart Failure Association is a patient association established in 2016 in Lithuania. LHFA is a member of a Global Heart Hub and a member of Lithuanian Patient Organisation members hub.
The association is uniting, consulting and teaching patients who are affected by Heart Failure from early to late stages. Association raises awareness about the HF, promotes the prevention to society by educating them, represents HF patients voice in Lithuania and abroad. Shares best practises and patient lived experiences to encourage patients, society and health care professionals to work together by reaching understanding, diagnosis and treatment effectiveness.
More information:
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Twitter: @TeguPlaka
