Carlos did well for several years. He was gaining weight and despite my concern that he was developing ascites, seemed to be doing well. We moved to Arizona in 2006 and were thrilled that there were two transplant programs in Arizona - here in the Phoenix area and in Tucson.
The cardiologist put in an AICD in 2007, telling us that people with his heart function were at higher risk for sudden cardiac arrest and this would provide a safety net for him. Gee, very reassuring. :p
I harassed the docs about his continued weight gain, Carlos having gained about 30 pounds very gradually over the past 5 years. They reassured us that it wasn't fluid. They would look at his ankles and say he isn't swollen. I would always tell them, he accumulates fluid in his belly not in his legs. What we learned later was this is typical in young people with heart failure. They tend to present differently than older people and the traditional CHF signs and symptoms are not seen as often. Primary cardiologists are not used to seeing young people with heart failure and I guess aren't as aware of how it presents in them.
By 2010, he was weighing in at about 245 pounds. He left the hospital in 2002 about 200 pounds!
In February of 2010, Carlos picked up a cold. Then it progressed to bronchitis. He was treated with antibiotics, where he briefly got better. He then worsened and was diagnosed with pneumonia. He was treated outpatient for that. But we were concerned because he was so run down so by the beginning of April, he was told to come in through the ER and he would be admitted for a heart cath. He hadn't had one since 2002. Previous echos over the last few years had showed some slow decline in heart function. His ejection fraction was around 10-15% now. After the heart cath, they determined his ejection fraction was down to 5%! No one could believe he was still able to walk around. It was a very scary time. We thought he might die.
The hospital stay was a horrible experience. We had two cardiologists arguing (once in front of us) about the best course of action. One felt he should have a upgraded pacemaker called a Bi-Ventricular Pacemaker while the other thought he didn't meet the criteria for the research study on it and wanted him to have transplant evaluation. Here's a video that will give you an idea of what was going on...