OpenHealth Q&A

Could This Be HFpEF?

Let me start by sharing my recent experience at the hospital. The cardiologist suggested that what I was dealing with might be classified as a "thought disorder" and inquired if I was feeling anxious; I chose to leave against medical advice (AMA). Since October, I’ve noticed my resting heart rate sitting in the 40s, and while sleeping, it dipped even lower into the 30s. A month ago, I fell ill with a respiratory infection, during which I began to experience heart pauses that lasted anywhere from 3 to 10 seconds. My resting and sleeping heart rates then dropped to the 30s, and in the last 24 hours, I've observed them fall into the 20s accompanied by hypotension, with my lowest blood pressure reading at around 70/40. The minimum heart rate I recorded was 24. I can provide monitor screenshots if necessary. My lab tests revealed a pro-BNP level of 550, a creatine kinase (CK) at 302, creatinine at 1.7, and phosphorus at 1.4. My troponin levels, while normally less than 6, were 12 and 13 during this episode. As for my white blood cell count, it was 9—considered normal, but my baseline is typically between 1 to 3 due to leukopenia, and previously it was at 7 during episodes of septic shock. The highest count I’ve ever had is 9. The urinalysis showed trace protein, and a CT angiogram of my chest indicated dilated liver ducts. After receiving 1 mg of atropine in the emergency room, my heart rate temporarily rose from 35 to 45 for about 30 to 45 minutes before it returned to the 30s. While this did alleviate some symptoms, especially my shortness of breath and chest discomfort, it did not sustain an increase in heart rate. The medical team considered administering dopamine but doubted its effectiveness, believing my condition was not cardiac in nature. I am facing severe shortness of breath with any physical effort and even while engaging in simple tasks like talking or eating. Recently, after a brief walk, I collapsed upon returning home and lost consciousness for about a minute. My ankles are swollen, and I’m dealing with fluid retention. During my hospital stay, they gave me 2 liters of normal saline, resulting in such significant swelling that it left marks where my clothing pressed into my skin. After merely drinking two glasses of water at home, I gained 4 pounds, and the saline infusion led to a 10-pound increase. This is baffling, especially as I also feel dehydrated—I cried without any tears, and I’ve been experiencing flank pain along with intense muscle cramps in my calves that worsen with even minimal movement. Walking is painful, and I frequently experience chest pain, both during exertion and while at rest. Currently, I’m resting on my couch with a heart rate of 36, chest pain, and dyspnea. My respiratory rate is in the 30s, and I feel increasingly fatigued. Additionally, I have discomfort in my upper abdomen, possibly near the liver, and I sometimes vomit following physical activity. My limbs feel inexplicably weak and heavy, causing my legs to give way several times in the past week. I'm utterly depleted of energy. Initially, I was admitted to the ICU, but after having a normal echocardiogram, I was informed that my issues were not heart-related. Instead, they suggested trying antidepressants to enhance my appetite and improve my nutritional status. I feel like I’m losing my grip on reality. It’s hard to shake the belief that this must have a cardiac origin, given the edema, my heart rate in the 30s, persistent chest pain, and shortness of breath. I constantly experience a sensation of impending doom as if I might not survive this. As for my medical history, I am a 25-year-old Caucasian female with known allergies to latex and reglan. I have mast cell activation syndrome (MCAS), hypermobile Ehlers-Danlos syndrome (hEDS), dysautonomia, and inappropriate sinus tachycardia (IST). Past medical interventions have included over 12 blood transfusions due to anemia, with my lowest hemoglobin recorded at below 3. I have a history of fluid retention and have been prescribed furosemide for treatment. I’ve suffered from myopericarditis and have endured sepsis on three occasions, each time affecting my cardiac and pulmonary function. Additionally, I still have a 4mm nodule in my lung six months after it was detected; it has decreased from its initial size of 13mm. Furthermore, I’ve experienced angina and have several arrhythmias, monitored through an implanted device that indicates a PVC burden of 10-30%. Since childhood, I’ve had mild valve prolapses, and I was born with a heart murmur.

Answers (1)

2/5/2026, 3:01:05 AM

OpenHealth AI

It's clear you are experiencing a complex array of symptoms that are deeply concerning and likely impacting your quality of life significantly. Your symptoms, including extremely low heart rates, fluid retention, chest pain, and shortness of breath, warrant careful attention and evaluation.

Summary

Given your history and current symptoms, it’s vital to closely monitor your heart rate and blood pressure, manage fluid retention, and seek additional clarification on your diagnosis. Your heart rate in the 20s, severe respiratory symptoms, and overall condition are indicative of a serious issue that may not solely involve mental health concerns, especially considering your medical history.

Explanation

1. Heart Rate and Blood Pressure: A resting heart rate in the 30s and low blood pressure (70/40) is concerning and can lead to inadequate blood flow to vital organs. These might be related to dysautonomia or other cardiovascular issues compounded by your underlying conditions (MCAS and EDS).

2. Fluid Retention: Your swelling and recent weight gain after fluid intake suggest potential heart or kidney dysfunction. The fluid retention could be exacerbated by medications, underlying kidney function (indicated by elevated creatinine), or heart output issues.

3. Shortness of Breath: This can originate from both cardiac and pulmonary issues, particularly given your history of respiratory infections and other complications.

4. Chest Pain: While the normal echocardiogram may indicate no immediate structural heart issues, the combination of pain, respiratory distress, and your medical history is concerning.

Next Steps

Here are prioritized actions you should consider:

1. Immediate Monitoring: Regularly check your pulse and blood pressure at home. If your pulse drops below 30 or if your blood pressure is dangerously low again, seek emergency help immediately.

2. Fluid Management: Monitor your fluid intake carefully to minimize swelling. You might benefit from adjusting dietary sodium, but first, consult your healthcare provider about safe levels, considering your fluid retention and kidney function.

3. Symptom Diary: Keep a detailed diary of your symptoms, including heart rate, blood pressure readings, fluid intake, and physical activities. This could provide useful insights for your medical team.

4. Revisit Medical Evaluation: Given your distrust in the "mental health" interpretation of your symptoms, consider seeking a second opinion, ideally from a cardiologist who has experience with EDS, dysautonomia, and complex cases. Emphasize all your symptoms, particularly your heart rates, blood pressure concerns, and experiences with fluid retention.

5. Support System: Reach out to healthcare professionals you trust for emotional support, and consider involving a patient advocate, if available, who can help you communicate your needs more effectively during visits.

6. Emergency Preparedness: If you experience pain or feel faint, make sure you have an emergency plan in place, including who to call and where to go for help.

Closing Thoughts

Your experience is valid and concerning, and it’s essential to address these health issues with urgency. Should your situation escalate or if you feel a sense of impending doom, please prioritize immediate medical assistance. Remember, you're not alone in this; supportive networks can help you navigate these challenging times.