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Closed 07/08/2018

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    Weʼve raised £0 to Help me to recover a normal life

    Closed on Tuesday, 7th August 2018

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    Story

    Hi all, I’m a guy of 26 years old and I’m asking for your help in order to try to live a normal life again or at least a life which can be considered normal. At the moment my life is very limited as I often have chest pain, shortness of breath and other cardiological symptoms. I can’t walk, every single action is very hard for me.

    I’m going to tell you my story. It’s a bit long but I’ll try to resume it. My problems began in 2013 when I was 21. Before that moment I was living a normal life, I’ve gone to gym and I was doing just what a normal guy does. One day, during a race, I felt a terrible pain in my chest, I was worried so I went to the hospital, where they made some analysis but as nothing was detected they sent me back home. But something had changed because I could not run anymore. I kept feeling pain in my chest and shortness of breath, not only when I run, but even when I wasn’t. Meanwhile I kept making analysis but the cardiologists couldn’t detect my problem. I couldn’t even walk without feeling that pain in my chest.

    One day, in July 2016, during a cardiopulmonary test, a pulmonologist noticed something irregular and he booked me a arrhythmology visit. The doctors noticed that, when I was under stress test, there were some variations of the ecg and they decided to admit me in order to taking tests. During the CT scan, they found out I have a congenital malformation called myocardial bridge. It means that a coronary, normally the LAD, the most important one, does not pass on the surface of my heart but it pass through the heart, the depth and the length can be different from case to case.

    Once the disease was detected, I was put under a therapy in order to feel better. But I wasn’t feeling better, I could not even get out of bed. I’ve tried several medicines (calcium channel blockers, beta blockers..) but none of these was useful. Meanwhile I was studying my disease and I found out it is not a very well known malformation and there are not so many researches about it. The doctor who studied the problem is in Stanford, California. She talked about my disease and about the surgical procedure to solve it. I post an article written by the doctor, Ingela Schnittger: (https://med.stanford.edu/news/all-news/2016/10/unroofing-surgery-relieves-debilitating-symptoms-of-heart.html ) The doctor explained how to solve the disease just in case the medicines would not have helped me at all.

    I could not go to Stanford as it is too expensive, so I’ve tried to solve my issue in Italy, but I was feeling worse and worse, I couldn’t even move and so I was admit to an hospital where the doctors decided for an angiography in order to check my coronary. They found out that my myocardial bridge is very long, 6 centimeters, it is very deep and can caused an ischaemia. So they asked me if I would accepted a surgical procedure. The surgery is complicated and as I have already a very deep myocardial bridge the risk is to puncture the ventricle (I was the third case in 25 years, so just two persons tried this kind of surgery, while in Stanford more or less 50 patients are operated every year). After the surgery, they told me everything was fine, I’ve been in rehab but I kept feeling the chest pain, but they told me I was just anxious.

    10 days after my being released from the hospital, I talked with the doctor who operated me as my chest pain continue and he decided to check again, another angiography and when he did it they told me that the myocardial bridge was actually solved ----- but there was a severe fixed stenosis (that no one has ever been able to explain to me why was there, on the contrary they told me that maybe it was there since the beginning but no one noticed it). This stenosis was treated with angioplasty and stent. Another month of rehab but I was feeling worse, I still have pain in my chest and when I have this pain, there are also ecg variations, so they thought I could have a Coronary Microvascular Disease or some spasms of the coronary artery. I did another angiography but nothing was detected after that. I went back home but I still have pain in my chest so I decided to go to another hospital and they did a new angiography with acetylcholine to check if I have coronary spasms. They found out the myocardial bridge was still there but it was not like before and I actually have severe coronary spasms. As it is a very rare case, they decided not to proceed with another surgical procedure and treat me with the medicines.

    I went back home but I was feeling really bad, I can’t walk, every single move is hard and my chest pain continue.

    I didn’t know what to do so I’ve sent my exams to Stanford in order to receive more information. They told me that, before the surgical procedure, my myocardial bridge was very deep and extended. They should’ve done more tests before the surgery in order to knows exactly where the bridge starts and ends and also how long. It was evidente that in the angiography (after surgery) the myocardial bridge was still there, it wasn’t solved and moreover there is a “kink /curvature” of the coronary, which wasn’t there before and they couldn’t explained why was there. They’ve never seen after surgery something like that. Then they put in a long stent in the mid LAD vessel in an area "covering" the middle section which had the most severe myocardial bridge, and also covering the "kinked" area. (I would like to explain why I’m saying this. According to several researchers a stent in a coronary which is affected by the myocardial bridge is not recommended as the risk is to stent fracture or coronary perforation) They told me that my stent is still open and they hope it will be for a long time. They confirmed that I still have effetely a myocardial bridge present and severe spasms in particular at the "edges" of the stent.

    I don’t want to point the finger of blame at anyone, I want just a normal life, I want to do all the things that the guys of my age do and I want to go to Stanford where they know my disease and where they can help me, I would do another surgical procedure if it is necessary, as my life is a real hell now, I always have this pain in my chest, I’m very limited, I can’t do anything, I live in my bed, I see doctors. Unfortunately Stanford is really expensive, I will never have the money I need to go there, for this reason, I’m asking for your help.

    Thank you very much for taking the time to read my story.

    I hope you can help me but if you can’t donate, please share this

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    Nelson Elm

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      Page last updated on: 4/9/2018 1:20 PM

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        Nelson Elm

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