President of AIPI
On my path with the disease, I received great support from the staff of doctors and professionals, who took care of me like a "grandson". But the real turning point in my life came thanks to my family: The loved ones are the real caregiver.
What were the first symptoms you experienced with your disease?
The first symptoms came at the age of 17 and were generic. Wheezing, dyspnea and a great fatigue that accompanied me at all times, with more acute phases immediately after meals, when the body requires more blood for digestion. Symptoms then gradually got worse.
How were the most important stages on the way to the diagnosis?
It took one year from the first symptoms to the diagnosis: in those 12 months the symptoms – being very generic – were underestimated by me but also by the doctors. Initial checks were overall OK, so a first diagnosis was "stress asthma", not much credible for a young and vital boy like I was. It was only by chance that a cardiologist, at a time when the symptoms had become more difficult to manage, mentioned the name of the disease for the first time. The next step was hospitalization for the checks and it was in the hospital that I celebrated my 18 years. There then came the confirmation: Pulmonary Hypertension.
Dealing with the diagnosis was not easy. The doctors described the disease but without really outlining a course of treatment, what to do to get out of it, if not a mention of a "lung transplant, very difficult to perform" or pharmacological treatments "difficult to find". In the meantime, with such a late diagnosis, my condition had worsened a lot, so that I received a life expectancy of 6 months. It was then, when, together with my family, I decided to make my moves to find a solution. We found a specialized structure and center of excellence in Bologna, we decided to sign the request for voluntary discharge from the hospital where I was and I returned home with only one diagnosis of disease that would have led me to death within a few months without a treatment prescribed. Shortly afterwards, just by chance, I got in touch with the Cardiovascular System Diseases and Respiratory Diseases Unit in Bologna and immediately, having ascertained my extremely critical situation due to an effusion to the pericardium, it was decided to proceed with emergency hospitalization and drug therapy.
Within 72 hours the situation improved, after a week my heart was stabilized.
Following these events, I started my commitment with AIPI: I had, and still have, the dream of doing something to avoid that the diagnostic path of Pulmonary Hypertension is left to the chance and to make it a more structured path, starting from the dialogue with the GP.
What did the diagnosis change in your life and in your personal and professional entourage?
The diagnosis has radically changed my approach to life. I was a boy and my immediate thoughts went to everything I had not yet experienced, especially love. I wanted to find love and build a family. In fact, then, when I began to get better, it took some time before I was able to realize this dream. Around the age of 20, life exploded in my hands, if up to the age of majority I had always been an active but scrupulous and dutiful boy, after the diagnosis I wanted to live fully, feeling that life was like a "time bomb" and I had to live every available minute.
Afterwards, I entered a trial protocol for an oral drug. The experimentation was successful, but in the meantime I had serious consequences such as severe side effects. Only when the results came out they told me that the substance given to me was a placebo! This taught me the great power of our mind, how it can affect our body and the weight of rational thinking.
What was the biggest challenge and biggest support you were facing in this new situation?
The great challenge began when I realized that I had to "live" with the disease, I am not saying to "survive" but "live with" in the true sense of the word because the disease is inside me. At the moment I don't have any major symptoms and 90% of my time I live my life quietly taking care of myself with oral therapies. A big step was precisely to switch to oral therapies and then starting a normal life and really focus on my priorities: love and a family.
Another important challenge, which I am still working on, is the commitment with AIPI. It is my dream: working side by side with doctors, I want get to a day when Pulmonary Hypertension is taken into consideration from the first symptoms.
In my path with the disease, I received a great support from the staff of doctors and professionals at the Bologna hospital, who took care of me like a "grandson" to take care of. But the real turning point in my life came thanks to my family, the loved ones are the real care giver. I believe that the presence of a loving person during the diagnosis and treatment of Pulmonary Hypertension is of great importance; to date about 20% of patients who suffer from it unfortunately cannot rely on it, taking critical situations to the extreme.
How did you perceive the time shortly after the beginning of your therapy?
After the start of therapy, time seemed endless: the length of the day was based not so much on the alternation of hours of light and dark as on how long I chose to live that day. I understood that time cannot be bought, I understood its value, the importance of never wasting it and making the most of it. Immediately after the diagnosis and the first treatments, a day lasted 24 hours: I tried to make the most of my time, then slowly I started to allow myself a few more moments of rest, but still today I consider sleeping a waste, so I rest only the necessary.
Today I can say that the disease has allowed me, and still allows me, to live with an extra awareness, it has certainly taken away a lot but it has given me the opportunity to enjoy every moment of my life to the fullest.
How do you feel today in your everyday life - how would you describe life with your disease?
Today I feel like a healthy person, I also believe I have "an edge" given by the great awareness I live with every day. The disease is certainly present in my life but awareness is even more so. I don't tie every activity I do to the pathology by setting myself limits. I am aware of my difficulties and I recognize that certain activities may take me longer, but that does not stop me.
What would be the most important recommendations for other patients with PAH/PH?
My first recommendation for patients who experience the first symptoms would be to look for a center where they can be taken care of with professionalism, not only and not so much in terms of affection or empathy, but from a medical care point of view. A good medical network is, without a doubt, the most important pampering to look for: the cure. And then I would like to encourage patients themselves to do their part: insisting on making timely checks, take action in person, properly communicate with specialist centers and associations, listen to official and authoritative voices.
Finally, a message I want to share. If I think back to my experience during the drug trial process in which I was given the placebo for months, I feel I can say that a large part of our strength lies in our mind. Our mind is key to go over this whole process.