The testimony of Rossella Repaci
I was diagnosed with hypertrophic obstructive cardiomyopathy at the beginning of 2021, after months of investigations and specialist visits in which the doctors remained vague and I was increasingly disoriented. I lived a long period of "non-diagnosis", in the sense that since I was little, cardiologists always said that I had a "heart murmur" but not of a dangerous nature and to be monitored with annual visits, which I have always carried out.
I will never forget the day in a well-known hospital in Milan when the cardiologist gave me the diagnosis. A long, unknown, difficult name. I will never forget that day, because in the way it was made known to me, it was a sentence for me and my family. A few seconds later, he even added that with my heart and the severe pathology I had, I could "forget about having a child", because it was too dangerous and I would not have survived the pregnancy. I replied that he was predicting a half-life for me and he replied "that I had to resign myself, that with the drug I would have improved the situation a little, but that my pathology leads to this". I hated that doctor with all my heart, but today I thank him because he pushed me not to stop at the first diagnosis and to seek confirmation and further clarification elsewhere.
After careful research on the internet, I understood that Careggi in Florence was the center for me. I was truly desperate and distressed. I sent a private email to Prof. Iacopo Olivotto to whom I also forwarded the specific tests and he, noting the severity of the cardiac situation, made himself available. I immediately called the center to have a private visit, to reduce waiting times, and on that very day, as fate would have it, a person had cancelled. Within three weeks I managed to be at Careggi.
That day, Prof. Olivotto took on board all my fears and anxieties and gave me so much hope, showing me the paths: first of all, with pharmacological treatment and the possibility of surgery for certain conditions. His words gave me serenity and made me see the light that was slowly illuminating the new path that I was about to travel together with my family and the man who in a few months would become my husband.
Together we reconstructed that my cardiomyopathy had already manifested itself in adolescence and had always accompanied me until those days: excessive tiredness after minimal physical effort, ever-present exhaustion, tachycardia, shortness of breath with a fast walk or with a few steps. All symptoms that had always been associated with other pathologies such as thyroid, hormonal disorders, low iron.
Subsequently my family began the diagnostic/genetic process. My brothers tested negative and my mother positive, but for another form of cardiomyopathy not associated with mine. I was made safe with the right drugs and in the meantime I continued my diagnostic process such as stress testing, MRI, genetic testing. My heart was as if it had raised the white flag, it had held up for years and years and I felt that my life was really becoming half, I could no longer walk three steps without tachycardia and shortness of breath.
In light of the results, Prof. Olivotto, in September 2021, advised me to meet Prof. Paolo Ferrazzi to verify the path of the intervention. On October 18, 2021, I met the one I began to call the gentle giant, Prof. Ferrazzi, who told me that from then on, at the latest, after three months, I had to be operated on. He outlined all the risks to me, explained the intervention, the length of the hospital stay, the long rehabilitation and the benefits of a return to life. Perhaps for me, a new life.
Of course, I left the visit with a mixture of fear, but at the same time with a lot of hope. Professor Ferrazzi carefully chose the words with which he set up the entire visit. He was sincere and clear but at the same time reassuring. I gave my ok to put myself on the waiting list to be called and in the meantime I thought about doing the things I liked most: traveling with my family, with my dearest friends, doing something for myself and pursuing the dream of enrolling in university again to become a psychologist and spending the time of hospitalization and rehabilitation studying, which is one of the things I like most.
I am already a pedagogue and a teacher but, after this last experience of mine, I have taken up the profession again and I would like to specialize in the field of psychology and narrative medicine through the care of communication between doctor and patient. An aspect that, from my point of view, plays a central role in the success of a therapeutic plan as much as drugs. Words heal, they must be chosen carefully, they can bring relief or desperation and fear and I like to think that the medicine of the future will also focus on this.
In January 2022, exactly one year after the diagnosis, I was operated on by Prof. Ferrazzi and his team. It was a strong moment for me, my family and especially for me and my husband and all together they helped me climb a large and steep mountain. There were moments of despair, the surgery was very difficult because there were complications, but the professionalism of Prof. Ferrazzi made sure that everything was resolved for the best.
I woke up as if with a new heart, with my valve (which fortunately was not replaced). Waking up in intensive care and still being alive was the greatest emotion of my life, I had also psychologically prepared myself for that small percentage of possible non-waking up. The following week in the ward, immediately after regaining some functions, I began to study, to listen to the recordings of the lessons and to find a diversion that would make me disconnect from the physical pain, the fatigue and the heaviness of recovery. Back home I continued the hospital rehabilitation program every day. It was a period in which slowness and care were the pampering I allowed myself. I continued to study, to read to prepare myself as soon as I was ready for the exams to take.
I was followed in an excellent manner by Careggi-Florence, Auxologico San Luca-Milan and Policlinico di Monza: together they took my case to heart and studied the best solutions for my return to life.His I will always be grateful to every single person who made this possible.
Here is a summary of the stages of my journey:
January 2023: positive feedback on success and recovery from surgery from all three hospitals.
January 2024: after the appropriate tests, I received the ok from Prof. Olivotto, Prof. Ferrazzi and Dr. Cerea to be able to think about a possible pregnancy.
July 2024: I graduated in Psychological Sciences and Techniques with a thesis on Museum Therapy at the Uffizi for patients suffering from fibromyalgia and in the last two years I have specialized in educational consultancy in the family, legal and school fields.
September 2024: I enter the San Raffaele University for the master's degree in Clinical Psychology to follow through on my dream, along with another that is even bigger. At a certain point I understood that to overcome and get through the diagnosis of cardiomyopathy I didn't have to engage in a fight with the disease, but on the contrary I had to make peace with it and, metaphorically, take it by the hand. Have it sit next to me and together we get up and walk the road and know that that little dot of light, as I walked, slowly became bigger. Until I reached a point where I understood that I was at the top and that I had made it. Today I have a better quality of life and I can do things that I couldn't do before.