My hypertrophic cardiomyopathy seen from both sides of the fence

My story begins at the age of 12 on the occasion of a cardiological examination performed to be able to start tennis at a competitive level. On that visit I found a right branch block and a systolic murmur. The cardiologist, Dr. Poponcini, immediately thinks of an atrial defect and sends me to Florence to see a friend and colleague of his to perform an echocardiogram.

That was the first time I went to the studio via Jacopo Nardi in Florence. On that occasion, however, I did not meet Franco Cecchi, who would later become my cardiologist, as well as my friend and colleague. I was visited by another colleague of his, with whom he shared the study, Dr. Zuppiroli. It was 1984 and the echocardiogram was then only one-dimensional. I saw flowing on the paper that came out of the printer and on the screen of waves, only apparently chaotic, within which Dr. Zuppiroli carefully chose points between which he measured distances. The distance in particular that defined the diagnosis was 20 mm at the time. No hole in the heart, therefore, no atrial defect but another diagnosis: non-obstructive hypertrophic cardiomyopathy. I still remember on the one hand our unconscious relief for the narrow escape of an imminent surgery, on the other hand the attempt to inform us about that concept of sudden death which, then even more than today, was a real sword of Damocles on the head. of us patients.

That day changed my life in multiple ways, not just because I was diagnosed with Hypertrophic Cardiomyopathy. I still cannot say today whether I was more fascinated by the elegant figure of Dr. Zuppiroli or by those waves that he was able to masterfully interpret by choosing points apparently at random. But surely that was the day when I decided that I too would do that job (no longer a bricklayer). I never changed my mind until my specialization in Cardiology in 2001. Thesis on a particular form of Hypertrophic Cardiomyopathy, Fabry's disease, and Specialization thesis on Hypertrophic Cardiomyopathy with hypokinetic evolution. A path aimed at understanding my disease in order to manage it and treat it better as a cardiologist, with the added "luck" of being able to know it also as a patient.

It may seem strange to some that I write "luck", but I have never experienced my cardiomyopathy as a misfortune or a limitation. On the contrary, as a patient with my path, I have progressively acquired a greater empathy towards those who suffer, accompanied at the same time by an ill-concealed intolerance for patients who complain of great inconvenience for minimal ailments.

I lived a normal life as long as I could and when I couldn't, due to the progressively worsening symptoms, I always tried to make the life I could live for me, at that moment, the best in the world.

I still remember a sentence from my mentor during my university years, Professor Attilio Maseri, in response to my fears of going for the first time, alone, to the American College of Cardiology congress in New Orleans to present the results of my first research. : “Don't put yourself under a glass dome without living your life. If the problems come you will face them. One at a time ". So I did in the following years, when my Cardiomyopathy had a restrictive-hypokinetic evolution (bad elasticity and bad contractile strength) and I turned to my friend Prof. Franco Cecchi, with whom I also shared the interest in patients with Fabry. Atrial fibrillation, anticoagulants, ineffective attempt at ablation, implantation of a defibrillator. Hard years, in which the passion for my work, faith in God and the closeness of my wife have always supported me, who took me with her when I was already starting to have important symptoms, but who never made me weigh them all the things we couldn't do due to my condition. The best way to stay close to a heart patient. I could tell you about the electrical cardioversion performed in New York on my honeymoon, about my difficult coexistence with the defibrillator, about the TIA with dyslexia that we still laugh about now when we remember the bizarre words I spoke in those 5 minutes.

Hard years, I said, but they taught me so much about the disease and about myself.

We arrive in December 2009, Congress of the Italian Society of Cardiology, hall of the wonderful Hotel Cavalieri Hilton in Rome. I am now in NYHA IV class, the last phase of heart failure, but I am still laboriously working. I am not there for the congress but to meet Franco, with whom we had already talked about the transplant and to tell him “Here we are”. "Well, I'll call" he replied. In January 2010 I started the process to get on the list for heart transplant. It is not difficult to decide to undergo a heart transplant. To date it has been the biggest and at the same time easiest decision for me to make. Trivially, because you feel inside that you have no other choice, that dragging yourself no longer makes sense, and that the physical and psychological effort has become unbearable. This cardiologists often do not know, and only the best are able to perceive it. Prof. McKenna, one of the leading experts in hypertrophic cardiomyopathy, told me: "You will shift from one disease to another one" ("You will move from one disease to another") referring to the condition of immunosuppression that characterizes the life of patients after the transplant. But he, despite being a great cardiologist, has never been a heart patient and does not know the "shift", that is the passage from despair to hope, from dyspnea for minimal effort to the first breath you take when you wake up after the transplant.

I was transplanted on the night between 5 and 6 October 2010. October 5 is the day in which St. Faustina Kowalska is venerated, celebrated in the church of Santo Spirito in Sassia in Rome, where my wedding was celebrated. Definitely a coincidence.

My donor, Fabio, died in a road accident but he is always with me.

I went back to work in March 2011, first in Rome at the Gemelli Hospital and then in the same year in Arezzo, where I was born and raised. I don't want to tell you the path before, during and after the transplant like a movie story. Some are unable to reach it and for others the same surgery is fatal. Post-transplantation is a complicated path both physically and psychologically, but it is still a second chance. Today, after almost 10 years, I am able to live a working life, of assistance and research, and of love, full of commitments and emotions.

What I feel like telling patients is obviously never to give up, to enjoy the life you have in that moment, to have faith in your doctors, in the science that goes on inexorably and, if you believe, in God.

Instead, I would like to ask my colleagues to never forget, in their prescriptions and recommendations to their patients, to always add a note of hope, a smile, a pat on the back or a caress.

We heart patients with a thread of hope make it for miles.