Gabriele, a 47-year-old Italian national residing in Brescia, bravely opens up about his personal journey with Chronic Thromboembolic Pulmonary Hypertension (CTEPH), aiming to raise crucial awareness within the pulmonary hypertension community. By sharing his experience, he hopes to shed light on this condition and its impact, offering support and insights to those who may be facing similar challenges. Gabriele underwent successful pulmonary endarterectomy surgery 12 years ago and is leading a full and active life.
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“I experienced the first symptoms at the end of summer 2010, after my vacation (at the seaside, in Greece). When I resumed my athletic training for the upcoming basketball championship, I felt very short of breath, meaning I had low endurance. I had never been a “sprinter,” but I had built up considerable stamina. In fact, I had even started participating in half marathons on an amateur level, attending meetings in the Verona province. Therefore, I decided to continue my training on my own, leaving the rest of the team at this stage so as not to hold them back. Initially, I attributed this decline in performance to the relaxation during the holidays, but I noticed that instead of regaining strength with each training session, I felt increasingly fatigued. One day in the gym, after a sprint, I started ‘seeing stars’ and almost fainted.
From there, I began a series of examinations, first with my general practitioner (allergy tests, asthma… and the introduction of Ventolin support), then chest electrocardiograms (which unexpectedly showed traces of previous injuries, attributed to a severe bronchitis or pneumonia that I had no recollection of…), followed by visits to various clinics, especially the Pulmonology Department at Clinica Pederzoli in Peschiera del Garda: resting tests, stress tests, walking tests, and cycle ergometer tests… Nothing conclusive emerged, but my capacity decreased as the weeks went by. I didn’t experience any other symptoms. My general practitioner hypothesized a situation of stress or anxiety and suggested a psychological evaluation…
Finally (in May 2011, about 9 months later), a ‘drastic’ but decisive step was taken: a transfer from the emergency department of Ospedale Maggiore in Borgo Trento (Verona) to the cardiology department for a comprehensive check-up. After a week of tests, the cardiologist suggested it might be idiopathic pulmonary hypertension, as she had studied some cases during her university studies. She referred me to the outpatient clinic at Sant’Orsola in Bologna and even provided me with their contact information (June 2011)! I sent all the reports (at that time via fax), and I was immediately called back and scheduled for a check-up hospitalization. Shortly thereafter (within 15 days), the correct diagnosis of chronic thromboembolic pulmonary hypertension (CTEPH) was made, and I was evaluated for pulmonary endarterectomy (PEA). They explained to me in a clear, comprehensive, and highly understandable manner what it entailed (risks, consequences, timing… and, of course, they obtained my consent), and I was put on the waiting list for the surgery (September 2011), with an estimated timeframe of within 6 months.
At that point, my state of mind was one of great optimism and trust. I felt almost relieved because I believed I was in excellent hands, expressing gratitude for medical research, information dissemination, the Lord (my faith had provided me with much support, in addition to my family and friends), and also… my ‘sports heart’ that had endured the presence of an approximately 8 cm clot in the pulmonary artery for a year! The call for the surgery came earlier than expected: on December 13th I was admitted, and on December 16th, 2011 I underwent the operation while Bologna was blanketed by an exceptional snowfall. The surgery performed by Dr. Mikus was perfectly successful (with concurrent closure of the patent foramen ovale and resolution of postoperative atrial fibrillation episodes through electrical cardioversion). I underwent rehabilitation in the hospital and was discharged on Epiphany, January 6.
Fortunately, I did not have to change jobs at the time as I was (and still am) in an administrative position, which is primarily sedentary and not physically demanding. Gradually, through periodic check-ups at the outpatient clinic in Bologna, my medication was reduced, and currently (regarding hypertension), I am on anti-coagulant therapy, with regular INR level monitoring (along with other medications unrelated to pulmonary hypertension).
Personally, the main challenge I faced as a patient was constantly seeking information that I could understand. Previously, I had never experienced any health problems, and I was a blood donor. Suddenly, I found myself thrust into a completely unfamiliar world. In the initial stages, uncertainty and discouragement crept in, especially because I couldn’t see tangible outcomes. However, everything changed when I reached the cardiology department in Verona, and even more so at Sant’Orsola, where I encountered highly skilled professionals with excellent communication skills.
Allow me to conclude with a “constructive” note: in my personal opinion (although I’m unsure if this is still the case today), an area that could have been improved at the time was the support and monitoring of the rehabilitation process. Coming from a sports background, I had to rely on my own resources (thanks to my knowledge of physiotherapists and fitness centers, among others). It would have been highly beneficial if postoperative patients didn’t feel “abandoned” and consequently fall into idleness and inactivity. Instead, they should be guided along a tailored rehabilitation path in terms of timing and methods, in order to maximize their recovery in terms of muscle tone, recovery capacity, and other functions.”
Commentary by Pisana Ferrari: Gabriele’s story serves as a powerful reminder of the crucial aspects in managing a complex condition like CTEPH. It emphasizes the significance of timely referral to expert centers specialized in the field, where comprehensive evaluation and appropriate treatment can be provided. Equally important is the access to accurate and accessible information about the condition and available treatment options, enabling patients to make informed decisions about their health. Furthermore, Gabriele’s experience highlights the essential need for ongoing support and guidance throughout the entire journey, including the post-surgery phase, to ensure a successful recovery and a better quality of life. Together, these elements play a vital role in empowering patients, raising awareness, and promoting optimal care for those affected by CTEPH.