I am the only child of a single mother. I was born in Caracas, Venezuela (October 12, 1971). I believe in God, love, friendship and good faith. I am in love with LIFE, my family, and friends, ballet, photography, organ donation, music, sailing, and nature. I am crazy about HOPE: my long hair Chihuahua. Like all human beings, I have plenty of flaws.
I have a Law Degree with a specialization in International and Economic Law, an MBA in International Business, and I am a PhD Candidate in Management Research and Business Economy. I have been a Business School Professor at the Universidad Metropolitana since 1997. I dedicated the half of my life to research and teaching and advising university students in entrepreneurship, management, and family business.
In 2007, after surviving an atypical pneumonia virus, chronic encephalitis and several days in a coma, I was diagnosed with Systemic Sclerosis (a.k.a. Systemic Scleroderma), a rare, incurable degenerative autoimmune disease that caused Pulmonary Fibrosis and Pulmonary Hypertension. I could not breathe on my own.
In September 2011, I was connected to oxygen, and as time went on, my breathing capacity continued to decrease, causing the most simple, everyday tasks to become impossible. Things like going to the bathroom, taking a shower, and walking required me to receive the highest quantity of oxygen possible to keep me alive. The only way to improve my quality of life was to have a LUNG TRANSPLANT, a long and rather complicated procedure that is not available in my home country. Before this day, I did not know about lung transplantation. I did not know what the doctors were talking about.
I started my research on transplantation. I tried in many centers around the world. After being rejected in Colombia, Spain, Brazil, Argentina, and various transplant centers in the United States of America because of my base illness and in Spain for being foreign, Cleveland Clinic Foundation agreed to evaluate me.
In October 2013, I had my first evaluation at the Cleveland Clinic Foundation to determine whether I was a good candidate for a transplant. This time the medical team said I was not ready. In January 2014, I had my second evaluation to review progress, respiratory condition, infectious diseases, vaccines, allergy tests, and review of physical and emotional conditions. In this visit, I got the acceptance for the Transplant Program but I still was not ready. In June 2014, I had my third evaluation to review progress, respiratory condition, review of physical and emotional conditions, and finally was put on the waiting list.
During all this period I was in Miami, Florida, because the weather in Cleveland was not good for my medical conditions, and also because the medical team said I could not go back to Venezuela. So, we decided to stay there. For every evaluation in Cleveland, I had to fly in an air ambulance, and they were nine flights that I will never forget. They were always stressful but always with the HOPE that I would be officially admitted to the waiting list for a double lung transplant.
After I was accepted, I had to pay the cost of the transplant because I did not have insurance here in the USA. We had been working very hard to get all the money I needed to pay for it. I did not want to ask for money, and I created a campaign with bracelets that I made with my mom and my aunts. We made and sold a little more than 60 thousand handmade bracelets, and with that, we had the required amount to be added to the waiting list. One side of the bracelets it says “Respirar es vivir,” and on the other side, it says “HOPE.” With this initiative, I simply want to remind people of the importance that breathing has in our lives, that life is beautiful, and that breathing is enough to live life – to be alive and take advantage of every moment. Breathing is something that comes naturally to most people and that does not require any effort. For me, breathing means staying alive. Right now, we continue to make bracelets and all the proceeds go to help people breathe.
When the payment was completed, I received the approval from the Ohio Solid Organ Transplant Consortium Patient Committee. Some days after, I was added to the waiting list by the United Network for Organ Sharing (UNOS). It was one of the best and happiest moments of my entire life.
On December 1st, I was admitted to the hospital because I needed an amount of oxygen that could not be administered at home. I spent the entire month at the Hospital. On December 22, Thanks to God, my DONOR, my medical team, my family, friends, and this beautiful country, when I was just minutes away from going into a coma and being connected to the ECMO, we received a call that there were compatible lungs for me.
Effectively, on December 23rd, I received the BEST GIFT OF MY LIFE: A Double Lung Transplant, and on December 24, 2014, I woke up with new lungs and I was breathing on my own. It was amazing. The best Christmas of my life, in ICU with a new pair of lungs.
What has gotten me through this process has been never losing HOPE, keeping a hold of myself, strengthening my FAITH from day to day, and receiving all the LOVE from my family and friends. It has been hard, no doubt. Being away from home, leaving everything, just TO BREATHE has been difficult.
I am currently a Donate Life Ambassador, through the Life Alliance Organ Recovery Agency University of Miami, because I really believe ORGAN DONATION is the most beautiful miracle of medicine and we can save many LIVES together. I also created the Non-Profit Organization Respirar es Vivir (Breathing is Living), which aims to inspire, benefit, promote, encourage, and raise awareness about the importance of breathing in our lives, especially to improve the quality of life of individuals who suffer obstructive respiratory illness, like Pulmonary Fibrosis.
I will stay in the United States for medical check-ups and to prevent potential rejection. The idea is to be here so they can respond in time since there are no transplant centers in my country. My follow-ups will continue for life, being especially common in the first few years post-transplant.
For now, I am just happy to BREATHE, and this is enough. Recently, I started taking ballet classes, one of my dreams in life. It is unbelievable, some years ago, I could not walk, take a shower, now I can DANCE. I am ALIVE.
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