Connect
Leaky Heart Valve (What are the next steps)?
Greetings! I have a friend in India who is seeking medical help/consultation. She has been in and out of the hospital several times over the past several weeks. This is what she wrote on March 15:
MY DIAGNOSIS: 📈
I took soooo many tests: blood, urine, ecg, ekg, sonography, mri, 24 hour heart monitor. And the only issue they can attribute my episodes to is a leaky heart valve (a condition I was already diagnosed with when I was younger but as I got older it seemed to not hinder my daily activities). After moving to India 8 years ago, my health slowly declined. I think because of different unique stressors, the years of issues exacerbated my condition, and started getting really bad episodes on March 15. When discharged from the hospital, I noticed that even the smallest strain on my heart starts making me feel weak.
This is her Symptom Log Summary:
Known condition: Leaky heart valve Hospitalized recently, cause still undiagnosed
---
Key Observations (Across Multiple Dates):
1. Cardiovascular-Related Symptoms: Rapid/increased heartbeat
Heart skipping beats
Slight chest pain
Heart feeling weak
Icy-hot sensation in chest
2. Neurological/Muscular Symptoms:
Uncomfortable and numbness (especially left arm)
Weakness in arms and legs
Pressure behind eyes
Twitching (upper lip)
Shivering episodes
Random bone/muscle pain (arms, legs, hands, feet, back, back of neck)
3. Gastrointestinal Symptoms:
Nausea
Indigestion
Difficulty eating, disinterest in food
Sensation of needing to go motion (but NOT diarrhea. Regular stools) Frequent urination
4. Throat and ENT Symptoms: Dry mouth and lips
Throat feels slightly closed Twitching upper lip
5. Systemic/Generalized Symptoms:
Feeling hot/sweaty episodes (in only hands and feet), sometimes slight temperature in head/neck area
Cold hands and feet
Puffy fingers (left side only) Shivering
Fatigue, general weakness
6. Appetite & Sensory Changes:
No hunger, or hunger without desire to eat Smell and taste changes
7. Mood & Other Sensations:
Anxiety/nervous feeling, especially pelvic area
Difficulty sleeping
New symptoms (Apr.21 while at the hospital after having episodes in the morning waiting to see the cardiologist): tightness around head, pressure behind ears (lasted for over an hour), lower back pain
---
Notable Patterns:
Symptoms often worsen when lying down
Flare-ups are episodic
Heat seems to trigger or worsen symptoms
Many episodes include multisystem involvement (cardiac, neuro, digestive)
---
Potential Areas for Medical Exploration:
Autonomic Dysfunction (e.g., POTS, dysautonomia)
Thyroid or Adrenal Dysfunction
Electrolyte/Nutrient Deficiencies (Magnesium, Potassium, B12, etc.) Autoimmune Disorders (Lupus, Sjögren's, etc.)
Mast Cell Activation Syndrome (MCAS)
Cardiac Monitoring (Holter or event monitor)
Gastrointestinal Function (GERD, IBS, gut microbiome)
**Any help, suggestions, recommendations would be great! Thank you so much for reading this post!
Like
Helpful
HugInterested in more discussions like this? Go to the Heart & Blood Health Support Group.
Connect
She needs to get that valve repaired. Is there any reason why she can not do that? Which valve is it? If it's the atrial valve, it seems that that repair is simple, and she will feel instant relief. If it is mitral, there would be a longer period of healing.
Thank you! Have you also experienced this, or are you in the medical field? I will let her know!
I was born with a leaky heart valve and this is what I learned:
Follow-up Care:
Your doctor will likely recommend regular check-ups and imaging tests (like echocardiograms) to monitor the condition and see if it's progressing.
Lifestyle Modifications:
Making healthy lifestyle changes can help support overall heart health and manage the leaky valve.
Regular Exercise: Engage in physical activity like walking or swimming to improve cardiovascular health.
Healthy Diet: Follow a heart-healthy diet low in sodium and rich in fruits, vegetables, and whole grains.
Weight Management: Maintain a healthy weight to reduce strain on the heart.
Medications:
Your doctor may prescribe medications to manage blood pressure, reduce fluid buildup, or prevent blood clots, depending on your specific situation.
Future Interventions:
If the leaky valve progresses or if you develop symptoms, your doctor may recommend surgical repair or replacement of the valve.
Important Considerations:
No cure for leaky valve: While you can manage the condition and improve heart health, a leaky valve can't repair itself.
Preventing complications: Taking preventative measures like managing blood pressure, maintaining a healthy weight, and preventing infections can reduce the risk of complications like heart failure.
Open communication with your doctor: Discuss any concerns or questions you have with your healthcare team.
By following your doctor's recommendations and making healthy lifestyle choices, you can effectively manage a leaky heart valve and improve your overall well-being, according to the Cleveland Clinic.
I am not in the medical field. I recently had a mitral valve repair. It sounds like she is experiencing heart failure and needs to have her valve quickly repaired.
Thank you so much!
Thank you for taking the time to list all the information! It's really helpful!