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When I was diagnosed with congestive heart failure (CHF) in 2007 at UCLA Medical Center, I got a lot of information from the physician. I felt very comfortable with her as she explained how this would affect my life. The information about my diagnosis and structured treatment was sent to my doctor. I was a good patient and felt no problems for several years. But the symptoms progressed.
First, I started to feel very tired and had no energy. Then I was placed on many medications. A couple of the cardiologists didn't seem too concerned, so I wasn't either. But as time went on, I got edema [swelling] and had to be wrapped for several months at the wound clinic.
Now I knew I had to be more of a partner with my healthcare team, and I started looking around for good medical care. I now have COPD [chronic obstructive pulmonary disease], so my breathing is not OK, and I fall a lot. This affects my husband in a significant manner, as he is my caretaker. When I fall, I usually hurt myself pretty badly, and he takes care of me. I now use a walker and a cane, so his care is cleaning and cooking when I can't do it. He worries about me, but doesn't talk about it to me; his silence while watching me lets me know he is concerned. My diagnosis has affected his peaceful life.
For my friends, I can plan an outing, but when the day comes, I may have to cancel because of my lack of energy to dress and drive there. On my birthday, they planned a luncheon at my favorite restaurant, but I ended up in the ER and then admitted to the hospital. My new cardiologist ordered a pacemaker, and I am now doing much better.
I have learned that I need a cardiologist and a primary care doctor who work together, with me, to keep me alive, healthy, and happy. My children were frightened by the hospital scare, so they call at least once a week to be sure all is well with me. Overall, I feel blessed to have the care I have from my husband, my medical team, and my family.
I would advise anyone recently diagnosed with CHF to make sure they have a cardiologist and a primary doctor who work together well. The cardiologist should care about them, keeping them updated on their medicines and care. I had a cardiologist who wouldn't return my calls and ignored me for a couple of years. I finally found the best cardiologist in our town who takes Medicare patients. I immediately signed him on, and he was the one who said I needed a pacemaker after my short stay in the ER. Within a few weeks of having a new physician interested in my condition, I was once more able to enjoy life.
The silver lining of my experience with heart disease is knowing that I have a wonderful husband who is ready to help me at any time. I have a tendency to fall and he is right there to pick me up. At one time, the fall was so severe that he had to take me to many doctors and labs. I was unable to drive, and he happily took me wherever I had to go. I have never heard him complain about needing to take care of me, though he also has a heart condition and PAD [peripheral artery disease]. I'm not able to do much, but I can use the computer, encourage others via MyHeartDiseaseTeam and telephone calls, and reach out to those who need support.
The focus is not on me, but on others. My husband has been a model of unconditional love; he serves me coffee, gets the paper out of the driveway for me, and does so many things. To the end of my days, I could never thank him enough. For those who do not have such a compassionate caregiver, it is important for them to find a close friend, or even an online group for encouragement. Behind every cloud is a silver lining, and I pray that others find theirs.
This article was written by MyHeartDiseaseTeam member Barbara Meulman as part of the Member Spotlight Series. Barbara is retired and was diagnosed with congestive heart failure in 2007.
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