My Journey With Ischemia and Nonobstructed Coronary Arteries
2022; Lippincott Williams & Wilkins; Volume: 15; Issue: 7 Linguagem: Inglês
10.1161/circoutcomes.121.008745
ISSN1941-7705
Autores Tópico(s)Cardiac Arrest and Resuscitation
ResumoHomeCirculation: Cardiovascular Quality and OutcomesVol. 15, No. 7My Journey With Ischemia and Nonobstructed Coronary Arteries Free AccessArticle CommentaryPDF/EPUBAboutView PDFView EPUBSections ToolsAdd to favoritesDownload citationsTrack citationsPermissions ShareShare onFacebookTwitterLinked InMendeleyReddit Jump toFree AccessArticle CommentaryPDF/EPUBMy Journey With Ischemia and Nonobstructed Coronary Arteries Lucy Flanagan, BBS Lucy FlanaganLucy Flanagan Correspondence to: Lucy Flanagan, BBS, Email E-mail Address: [email protected] Originally published19 Jul 2022https://doi.org/10.1161/CIRCOUTCOMES.121.008745Circulation: Cardiovascular Quality and Outcomes. 2022;15I was a 45-year-old healthy, fit, nonsmoker who worked as a corporate executive in Ireland and led a very busy and fulfilled life. Suddenly, I was like an invalid, unable to work, socialize, or exercise. Without any real diagnosis, I thought at first I would get better, but my illness just continued on and on.See Clinical Commentary by Tavella and BeltrameInitially, I had sudden onset of chest pain and breathlessness while walking up a hill. My general practitioner sent me to the emergency department, and following an abnormal stress test, I had an angiogram which showed my coronary arteries were clear. I was told there was nothing wrong with my heart, that it was probably reflux, and sent home. However, my symptoms continued: chest pain, breathlessness, extreme fatigue, and total collapse where my blood pressure would drop very low, and I would have to lie flat unable to move. Basically, I was unable to do anything other than sit on the sofa and rest. I had no quality of life.What followed was an 8-year journey to a definitive diagnosis during which I saw 15 doctors, had 22 sets of tests, and tried 18 different medications. This included 3 angiograms, 2 echocardiograms, and 3 stress cardiac magnetic resonance imaging. In 2013, an magnetic resonance imaging did indicate ischemia, so I was given a diagnosis by exclusion of coronary microvascular disease. Over the following years, I was given a myriad of different cardiac medications purely on a trial-and-error basis.During this time, I was also referred to several noncardiac specialists, including a gastroenterologist, neurologist, nephrologist, and psychologist. This resulted in several further sets of invasive tests such as 2 esophageal manometries, an endoscopy, a muscle biopsy, numerous blood tests, as well as ultrasounds, computed tomography scans, and magnetic resonance imaging, all of which were normal.It is very difficult to portray how devastating it is to realize that this is a long-term situation and that there is no effective treatment. Those 8 years were a complete roller coaster of emotions, constant medical appointments and tests, some of which were very invasive, and a continual experimentation with different medications, many of which had horrific side effects. I cannot emphasize enough how traumatic all this is. You are anxious about every test, hoping it won't cause too many symptoms, hoping you'll get answers, but that you won't be told anything too bad. But the overriding emotion has been that of disappointment and frustration and there is nothing more upsetting than being told there is nothing wrong with you when you know perfectly well that there is. Every new medication that is tried brings a whole new set of concerns and hopes. Will I have awful side effects or will this finally be the treatment that really helps me?It has been a journey of hopes followed by dashed hopes again and again. I was constantly being told that my condition was not life-threatening. Although this was reassuring, I had got to the stage where I was more interested in living life than not dying because I was not living life but merely existing.All this time my life had just been turned completely upside down. My quality of life was very poor, and I was unable to work at all. At most I could manage 15 or 20 minutes on a computer or at a meeting before getting symptoms. Having been used to running 10Ks, I could now only walk at a very slow pace over a very short distance. Any social life was completely out of the question. What all of this does to your self-esteem and your feeling of worth as a person is indescribable. You feel useless, find it hard to know where you stand in life or what your function now is. At the same time, you feel constantly guilty: guilty that you can't work or contribute, guilty that you can't be there for your family, guilty that you are holding your family back by not being able to participate in social occasions, family events, holidays, etc. Any attempt to keep going and just push through results in substantially increased symptoms, often complete collapse, being left unable to do anything for days after. Most of my time was spent slumped on the sofa in front of the television and this is simply soul-destroying. It is a very isolating and lonely illness where everyone else is just getting on with their lives and you are left in a limbo of chronic illness with no sight of any improvement and no idea if this is ever going to change.But thankfully, my story has a happy ending! I was very lucky to be invited to attend the Ischemia and Nonobstructed Coronary Arteries International Meeting of Minds Conference in London in September 2019 (INOCAInternational.com). I was even luckier to happen to sit beside a professor from Italy who is a leading world expert in the condition and has dedicated his career to improving health and quality of life for patients with ischemia and nonobstructed coronary arteries. I told him my story, and he said that what I had was not a definitive diagnosis and that I would need a definitive diagnosis in order to get the best treatment.After the conference, I went to see him in Italy and brought a summary of the tests and treatments I had already had with me. He looked at it all, listened to my heart, and, more importantly, he listened to me very intently. He was very interested in how my illness began and the exact details of my symptoms. Over a series of tests he recommended, he started to understand the mechanism of my disease and, more importantly, knew how to treat it. I received a definite diagnosis of microvascular angina, which he believes involves both microvascular spasm and impaired dilation. He put me on a new medication regime, tailored to my exact underlying mechanism of disease, which has basically transformed my life. It took several months to maximize the treatment and titrate up the medications to the optimum levels for me. Interestingly, one of the medications I am now on (diltiazem) at a high dose (120 mg, 4× a day) is one I was on before at a much lower dose (30 mg., once a day) and did not tolerate then due to low blood pressure but I am now tolerating the high dose with no side effects. This is counterintuitive, but as I understand it, microvascular spasm is the underlying cause of the low blood pressure so a low dose was not enough to stop the spasm and only decreased my blood pressure further. The much higher dose can actually stop the spasm thus treating the underlying cause of the low blood pressure.Now I have a quality of life I could previously only have dreamed of. My energy levels have improved significantly and my symptoms (chest pain, breathlessness, fatigue, etc) are greatly reduced. I am now able to have a reasonably normal life, I'm back working part-time, I can do some housework and gardening, and I can socialize and even go for a 20- to 30-minute walk most days. I now have my life back, although I still have to make sure I don't overdo things.My life has already been transformed and although I know there are probably ups and downs yet to come for me, finally, there was light at the end of the tunnel. I understand that my disease is just being controlled (as much as is possible) with medications and I do not yet have a cure, but for the first time, I have real hope for the future.Disclosures None.FootnotesThe articles published in Viewpoints reflect the opinions of the authors and do not reflect the policy or position of the American Heart Association, and the American Heart Association provides no warranty as to their accuracy or reliability.For Disclosures, see page 528.Correspondence to: Lucy Flanagan, BBS, Email [email protected]com Previous Back to top Next FiguresReferencesRelatedDetails July 2022Vol 15, Issue 7 Advertisement Article InformationMetrics © 2022 American Heart Association, Inc.https://doi.org/10.1161/CIRCOUTCOMES.121.008745PMID: 35861781 Originally publishedJuly 19, 2022 Keywordsischemiamagnetic resonance imagingblood pressurechest paincoronary arteriesPDF download Advertisement
Referência(s)