So of course, this is one of the big ones. I will try to address the topic of fear in this entry in several dimensions without turning this in a book (grin). Everyone has fears. Any one of us could meet our end any day by many different ways. I accept that as a valid point. This entry, I hope, will describe some of the specific fears of patients with Heart Failure, and communicating the issues of those with Heart Failure is the point of this blog.
The first fear most of us face is, will this kill me and how long do I have? When health professionals are candid, that admit that this is a debilitating and degenerative disease with no known cure.
One of the first studies most of us read has this message; “Median survival after the onset of heart failure was 1.7 years in men and 3.2 years in women.” This comes directly from the Framingham Heart Study, the definitive study accepted in the medical world, although the data is starting to get old. A link to this reference is just below.
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=PubMed&Cmd=ShowDetailView&TermToSearch=8319323&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstractPlus
Then there is also this accepted fact of science that comes from the May 15, 2003 issue of the New England Journal of Medicine: “Symptomatic heart failure continues to confer a worse prognosis than the majority of cancers in this country, with one-year mortality of approximately 45 percent”
So, we read this, and we get our first dose of reality therapy when it comes to dealing with what we have and understanding the seriousness. Cancer has an overall higher rate of survivability. So there you have it. Deal with it.
Another dimension of fear is the fear of the body giving out when you want to do some daily function. Like bathing. Or walking. Or being with someone you care about. Ask any Heart Failure patient and most will tell you they have good days and bad. Sometimes the bad days are predictable, when we over-exert ourselves.
Sometimes we start to feel okay and we tend to forget quickly that we pay a price and we do too much and then wham! You feel like you where run over by a truck. Sometimes this comes on without any real warning as well, and we never know when it will hit.
One last fear I want to express is the one that any patient faces when they have a chronic disease with a high mortality rate, and that is the fear is leaving your loved ones behind without knowing they will be watched over and cared for without you there. This fear can be exacerbated when one has small children, or has loved ones or friends that depend on you to be there for them.
In my personal case, I am lucky enough to have great friends who are on the list of persons to call “just in case” I am not able to be there for one of my children, who struggles with her own chronic disease.
I don’t want to close this post on a negative note, so let’s just say this fear thing is not something that controls most Heart Failure patients that I have met. Almost without exception, I have seen amazing bravery from old and young alike. I have heard that real bravery is not an absence of fear, but the ability to face and deal with fear. I am grateful to be associated with these people.
Some of my upcoming topics will be a bit more uplifting, they include Hope and “Technology is our Friend”
Thanks and my best wishes to you.
