Stacey's Journal

Went up to Cleveland Clinic and had the basic testing that they wanted to start with. I had blood work,ekg,chest x-ray, the most extensive resting echo and a metabolic stress test. Monday at 8 am we meet with Dr Gorodeski at the Cleveland Clinic to go over the test results and have our first face to face meeting. I hope that we can get me scheduled for a heart catherization and transesphogael echocardiogram soon. We will probably have to meet with Dr Gorodeski again after that. My mom and I want to know one way or another is there calcification or stenosis or broken mitral valve chordare or not.

Had my virtual visit with Dr. Gorodeski from the heart failure clinic at Cleveland Clinic. Since nobody has thoroughly investigated why I am having shortness of breath with exercise and doing normal every day activities and because you can't go by some of the testing that has been done we have start from scratch when we go up to Cleveland Clinic. They are starting with the basic tests such chest x-ray, resting echo, ekg, lung function tests and a Metabolic stress test. Dr. Gorodeski said that he would also be willing to do a heart catherization and a transesphogael echo as well. We are just waiting to hear from them about when I can get in for testing and meeting with Dr. Gorodeski. I also have to have my pacemaker checked out as well. I thought that things would run faster with getting me up to Cleveland Clinic and unfortunately its been hurry up and wait.

We sent my records up to Cleveland Clinic for a surgical review back at the end of August. Since not enough testing was done for a surgeon to recommend at valve repair or replacement we are going to be having a virtual appointment with one of their heart failure cardiologists on Monday, October 2nd at 8:00 am. We opted to do the virtual appointment because it was suppose get us up to Cleveland Clinic for testing and meeting a cardiologist sooner. Otherwise I had to wait until the end of October for appointment for testing and meeting a cardiologist face to face. We don't really know what the problem is. Just that I keep having shortness of breath and I can't exercise and I can't function to do normal everyday things and I am having shortness of breath off and on while sitting and pressure in the chest that comes and goes and constant chest pain. Back when I was able to exercise I also had fatigue. With not getting the help that I need . My mom and I have totally lost trust in the medical profession. I am extremely nervous about the virtual appointment with Cleveland Clinic. I am not going to get excited about going to Cleveland Clinic until I hear from a doctor that we are going to find out what is causing your symptoms and come up with a treatment plan that works for me.

I was born with ASD and it was found when I was 3 months. It was also found that I had a leaking mitral valve. I had a heart catherization when I was a year old. When I was 2 1/2 they repaired the ASD. We were never told that I had other valves leaking. I didn't have any problems until 2007 when I went to my Pcp for a routine physical exam and she found that I had developed Atrial fibrillation. I had made an appointment with Children's Hospital in Pittsburgh and before the appointment I had developed symptoms of Atrial fibrillation shortness of breath, palpitations,chest pain, blue lips and blue finger nails. The day I went to Children's I was in normal sinus rhythm and the doctor didn't believe us about my symptoms and nothing was done for me. He just had us schedule an exercise test which I had to wait 8 weeks for. By the time I came back in for the test I was in acute congested heart failure. There was a scrambling to get me in with an adult Ep doctor. The EP doctor told my mom that there was so much damage done to my heart that I almost needed a heart transplant but when he cardioverted me it reversed the damage to my heart. The cardio version only lasted 3 weeks and they had to start me on a anti arrhythmic medication but that caused me to Sinus Brady and so they put in a pacemaker/defibrillator. I still continued to be tired with exercise. Which was ignored by my EP doctor. I then learned that I had a defective lead for my defibrillator and it would need to be watched. I then later had it replaced. My Atrial fibrillation became uncontrollable with medication ended up on Amiodarone which turned out to be a very bad drug for me to be on. I ended up with permanent nerve damage in my index fingers and a rash on my skin when I'm in the sun. I had two shocks from my defibrillator with a month of each other. That I shouldn't have had. I ended up having open heart surgery and having the Maze procedure done and the doctor did a Mitral valve repair where he put two stitches in the inside of the Mitral Valve because we were told that I had a cleft valve. The maze procedure was a success. I just had some residual afib but it was less than 2% of the time. However the Mitral Valve repair failed. I still continued to be tired with exercise. In 2011 I experienced shortness of breath and chest pain and complained about and it was ignored and it went away on its own. I continued at different times to have the symptoms appear and then go away on their own. In 2015 I had my afib start back up again because my doctor didn't replace my pacemaker when it started dying at the end of 2014 and he put me back on anti rhythm drugs before putting in a new pacemaker. For some reason he was reluctant to put in the pacemaker but it made me feel better. In 2016 had some shortness of breath with exercise but it went away on its own. This year at end of my March I started feeling funny in the chest and started having shortness of breath and constant chest pain and we waited to see if it would dissipate and go away on its own but it didn't. We then went to see the doctor at the device clinic and was told to go the emergency room. We later took me to the emergency room where I was admitted but the doctors once I was admitted didn't take my symptoms seriously and just looked at my numbers from the tests they ran and tried to tell me that there was nothing wrong with my heart. We then took me to see my old EP doctor who told me the same thing. Yet I had been walking 2 miles a day until mid April and to stop because the shortness of breath got so intense that I could no longer exercise or do normal activities without getting short of breath. So here is this telling me to go and stress my heart. So I knew something was wrong just didn't know what it was. We go see a new doctor at the Congenital heart place and again tried telling me there was nothing wrong with my heart. I ended having to change health insurance and go to a different health system to find a doctor who would take my symptoms seriously. A friend of my stepdad's knew a cardiologist that we should go see. What impressed us so much was the fact he came into the exam room with a pad of paper and presided to take my heart history orally and reassured me that what was going wasn't in my head and there was a problem. He then ordered blood work to check for congestive heart failure and a heart monitor because they afib was acting up again. It turns out I am in the early stages of congestive heart failure. He also had me walk up and down hallway until I was very short of breath and listened to my chest and felt that my mitral valve was failing during exercise. Unfortunately I have to wait until July 20th for a stress echo and see the cardiologist that day and some point here have a cardiac MRI. Needs to be absolutely sure a third open surgery is needed. The hardest thing is waiting. My Tricuspid valve is also leaking more with exercise. I am 37 and I don't want to be going through open heart surgery again after this.