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I was diagnosed with heart failure with preserved ejection fraction (HFpEF) 2.5 years ago. After the initial shock of learning I have an untreatable and incurable heart disease, I settled into learning to live with the disease disrupting my life as little as possible, seeing my cardiologist, an expert in HFpEF, regularly and searching with him for clinical trials. I am not making light of HFpEF. It is a terrible diagnosis and attenuates every aspect of my life, altering my decisions, my routines, my relationships. However, with my physician’s guidance and support, I am living and continue to live a meaningful life, rich in experience and potential, both explored and realized. I have made and daily commit to a conscious decision to live my life fully until I die rather than spend the years remaining waiting to die.
However, a new, very frightening problem has crept into my life through this diagnosis. I am stubbornly, my friends and family say irrationally, independent, and I love to travel both for volunteer work and for pleasure. In the words of the song from Paint Your Wagon, I was “born under a wandering star.” Because of the HFpEF symptoms, which can be quite frightening to onlookers when I become nauseated, weak, pale with profuse cold sweats and lowered blood pressure and pulse, I wound up taken by ambulance to emergency rooms (ERs) more in the first year after diagnosis than in all the rest of my life. The symptomatic episodes are not the scary part. What follows is.
That first year, I had 5 visits to 4 different ERs around the country. I will not name the ERs except for The Mayo Clinic Rochester because I believe the other 3 are not unique but rather examples of the dearth of knowledge among physicians about HFpEF. So, to dispense with the 2 visits to The Mayo Clinic Rochester ER: I was taken in by ambulance both times, once for the breathing issue described previously and once for rapidly increased heart rate at rest. Both times, I was properly tested, observed, and released.
The other 3 experiences each have their own scary uniqueness. In each case, I reported immediately that I have HFpEF, gave the name of my cardiologist, and offered iPhone app access to my medical records. None of the 3 ever contacted my cardiologist.
The first time, I went to an ER certified by the Joint Commission of the Accreditation of Hospitals as heart care specialized after emergency medical services responded to an episode where I had labored breathing and felt as though I were drowning in my own fluids. The doctors there decided I had an ulcer that was acting up, which I do not, but, because I kept insisting that I have HFpEF and asking them to contact my cardiologist, they kept me for observation overnight.
The second time, I went to the ER at a heart hospital on a Saturday because I had gained more than 3 pounds in 1 day, although I am on a sodium-restricted diet. The doctors there ordered a chest radiograph and, on seeing my normal-size heart, said that I do not have heart failure and, implying that I should stop malingering, sent me home.
The third time, I had an episode while on an airplane flight. Fortunately, a physician and nurse on board gave me good supportive care until we landed, by which time I had begun to feel better. However, the airline would not let me continue my journey without medical release, so I was transported by emergency medical services to a local level 1 trauma center. Again, the HFpEF was discounted while rule-outs of aorta leakage, clots in lungs, and severe asthma were made. I was given intravenous fluids, not intravenous Lasix; kept in the ER and hospital about 40 h with multiple blood tests and a nuclear lung scan; then released with a final diagnosis of syncope, which is especially interesting since I have never fainted.
So, what am I afraid of? I know I’m going to die, probably sooner than I would like. I understand that, accept that, and have made accommodations for it. My wish, as HFpEF gnaws away at my function and life, is to die at home in the presence of my loving family. However, my fear is that 1 of these ER encounters steeped in arrogance and ignorance is going to kill me unnecessarily sooner in an isolative, painful way. The other side of that fear is my tendency to just see myself through episodes because I do not want to be misdiagnosed and improperly treated in an ER.
Fortunately for me, my cardiologist implanted a pressure sensor device that is helping to control my fluid buildup. Close supervision and medication management by my cardiologist and his team has ended my ER visits. But, I know that not all HFpEF patients are so fortunate.
My hope is that the HFpEF specialists will develop a patient support plan to help those of us with HFpEF receive proper ER care that coordinates their intervention with the specialists’ knowledge base while giving us the assurance that we can continue to live active, independent, productive lives.
Please note: Ms. Chauhan has reported that she has no relationships relevant to the contents of this paper to disclose.
- 2017 American College of Cardiology Foundation