Heart Failure Support Group

I was diagnosed in April 2009 with Congestive heart failure. Actually, 1 year prior to that I was having chest pains, went to the ER, they ran a bunch of tests, including a nueclear stress test. They found a bundle branch blockage and referred me to a cardiologist. I went to the cardiologist, who ran a bunch of tests and basically she told me it was not totally normal, but not that abnormal either. We could control this with medications and I needed to lose some weight and start walking. Although I didn't do very well with either of these recommendations, I continued on and she did not recommend a follow up at this point, just with my regular family doctor. So, there I was. I had what I thought was pneumonia. Was being treated for pneumonia and 3 weeks into it, I was getting much worse instead of better. My family doctor put me in the hospital and the cardiolgist showed up and asked "So, how are you doing with your heart failure?" I thought they had the wrong patient. Ok, so this is on friday and they are telling me I will need to have an implant device done on Monday. It scared the daylights out of me. I am 48 years old and scared to death.
Three weeks after the ICD was placed I had my first appointment with the cardiologist who did my suregery. The entire time I was there he was checking his watch. I had a list of about a dozen questions and he told me I would need to come back to the Heart Clinic to ask the questions. They could help me there. And he was off and running. I was disappointed and again scared to death because I couldn't get answers to my questions. 2 weeks later I saw a nurse practitioner at the heart clinic and she was great. But then at my next 3 month appointment, again the doctor rushed thru my appointment like I worked into his schedule, which I wasn't. Then I went to the heart clinic 2 weeks later and saw a different nurse practitioner, who was nice, but contridicted alot of the things the first nurse practitioner told me. I felt like I was loosing my mind. At this appointment also, they had my medications in their computer completely wrong. I once again thought maybe they have the wrong patient, but when we checked more information, no it was me, just wrong info. I went for my 3rd appointment with the cardiologist last week. I called in because I had some conerns about how I was feeling and I had gained 6.5 points in 4 days, I was having some heaviness in my chest and for the first time since my surgery I had heart flutters. He told me that I wasn't getting a full benefit from my ICD/pacemaker because I could not tolerate the jumps in my side that were happening previously when he turned it to where he wanted it. He said the leed wire must have moved and most patients could handle this, BUT APPARENTLY YOU ARE NOT ONE OF THEM. He was very rude about it. I call these hiccups, but they are harder than any hiccups I have ever had. And no I don't want to PUT UP with them. He said our only choice was to redo the wire. Then he turned the pace maker down or something, to make it not jump, said it would probably be fine and he thought I might need to see a psychiatrist, because the chest heaviness and what I was feeling was my imagination and I was just not dealing with my illness very well. I was in tears and frustrated when I left. I called another cardiologist office, made an appointment and wrote a letter to the one who did my surgery and fired him. I no longer feel I can seek advice from a doctor who treats me like this. If I cannot ask questions - and get answers - and if I'm made to feel silly when I call with concerns, how can I trust him with my heart. It's like I told him, You may deal with this every day and be a little calus about it, but this is my only heart and my life and I have never had chf before. It is wrong to be treated like a number. I live in a small rural city of about 250,000 people. This is just wrong!!!
Posted on 11/05/09, 11:11 am