| Experiences and stories




Hello everyone, I'm Alessia Muraro, I live in the province of Treviso Italy, and I am affected by a beta-sarcoglycanopathy involving the heart muscle. In 2015 I underwent a left ventricular assist implant because my heart was very tired. During a hospitalization in cardiac surgery in Padua, I asked if it was possible do a heart transplant, the doctors consulted with the neurologist and the respiratory physiopathology doctor who had already been in my care for some time.


To find out if I was suitable it was necessary to undergo various blood tests, tests for respiratory function, neurological examination, chest CT scan and finally cardiac catheterization. After this series of exams, they called me to tell me that I was suitable, I had good control of the trunk and head, which were necessary for the surgery, in addition, my respiratory function was good, and finally the catheterization also gave me eligibility for transplantation! So I was placed on the waiting list knowing that I would have to wait for the call for who knows how long, but after only 10 days I received the call from cardiac surgery, there was the heart available for me!


Honestly, I would never have thought of waiting so short because usually the waiting times are much longer ... I almost did not believe it but the happiness was so great that it made me cry with joy, but at the same time I was aware that the surgery was pretty tough with risks , and especially in my case, being a neuromuscular patient and therefore in a wheelchair, the risks and the success of the surgery were greater, also knowing that I was the first patient ever with LGMD2E or LGMDR4 to undergo a heart transplant! I entered the operating room saying goodbye to my mom with the hope of being able to see her again! The next morning in the ICU, they extubated me and I realized that everything was fine, in the evening I was able to finally see and talk to my family!


After 7 days they transferred me to the ward section. Transplants, everything was fine except for an injury to the left vocal cord, fortunately not irreversible, so after some time I regained the use of the word. The hospitalization was quiet, I performed physiotherapy to awaken the muscles, the speech therapist helped me with exercises to recover my voice, I also performed the 3 biopsies a week apart, all being negative and being in good condition as well as exams, they decided to resign after three weeks! For me and also for the doctors it was a good milestone because considering my basic muscular pathology they envisaged a longer and more difficult recovery. The return home was emotional, the first fifteen days were the most difficult to deal with because I was so sick, lacking in appetite, so many drugs to take, especially the immunosuppressants they made me sick. Slowly, I regained my appetite so I regained my strength, and day after day I realized that I was getting better and better and that the outcome of the transplant was very positive because I felt stronger, I was no longer tired as before with dilated cardiomyopathy.


Now, six months after the transplant, I feel like another person, I feel a strength inside that allows me to think about my future, I'm thinking of continuing with my study and creating a new life. With joy and happiness in my heart I want to thank the cardiac surgeons, the nurses and all the staff of the Cardiac Surgery Department Transplant Section, who have constantly helped me with love and devotion in this difficult path, also the doctors of neurology and respiratory physiopathology of Padua who have been following me for 23 years with love and devotion and who have contributed to making sure that all this could happen. Alessia Muraro

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