My Heartiversary

It's my 17 year old's Birthday today!! <3 Seventeen years ago today, I had a healthy pregnancy with no issues. A scheduled c-section , and a baby girl by 12 pm.  That night in the hospital , I suddenly could not breathe. Ignored by nurses as fluxuating hormones, or anxiety, they never even took a BP.  Discharged next day, only to continue to be SOB, and swollen and miserable. Dismissed as regular post pregnancy symptoms again and again by my Drs. I was made to feel like I was a bothering them with my questions. I even questioned myself.  I was ready to be a supermom.... After all, I had been through all this before. In 1988 I had a baby girl, and afterwards had some weird heaviness on my chest, couldn't take a full breath in...  Drs. ignored this as gas buildup , until my follow-up showed my oxygen levels in the 70s....They rushed me to the hospital to run all sorts of tests.. for blood clots, was treated for that, and also asthma, which I had never had before...I was on constant oxygen... I heard Drs. arguing alot about me, no one gave me any answers to what was wrong with me, after 2 weeks without my newborn, I was ready to go home. I was 21 years old then, young , active and healthy before the baby...  So in 2001, me being 35yo , maybe I was just being overly sensitive,  and it will take longer for me to feel better after having a baby.... But after 2 weeks of constant worsening symptoms and when I started to turn a grayish color, I ignored my Drs. and went to the ER. Where finally I was diagnosed after many tests.... with (PPCM), Peri-partum Cardiomyopathy... EF @ <10%.  Within a year I was announced recovered by my Cardiologists!!! My EF back to 55%... taken off meds and released me from their care.  5 years later I asked my Internist to do an Echo , just for piece of mind , I had always been a little winded and had some heart palps which I was told was normal. My EF came back @ 45%. Not anything to worry about Drs. said. ...another 5 years went by, 2013, symptoms of SOB, and palps increased, another ECHO..EF @30%... back to Cardiologists... back on meds... for life. Over the years my EF rollercoaster has been 25-45% ...In  2015, after a Tilt table test , I was diagnosed with  (POTS), Postural Orthostatic Tachycardia Syndrome...The term "POTS" was coined in 1993 by a team of researchers from Mayo Clinic, led by neurologist Dr. Philip Low.  However, POTS is not a new illness; it has been known by other names throughout history, such as DaCosta's Syndrome, Soldier's Heart, Mitral Valve Prolapse Syndrome, Neurocirculatory Asthenia, Chronic Orthostatic Intolerance, Orthostatic Tachycardia and Postural Tachycardia Syndrome.  In the past, it was mistakenly believed to be caused by anxiety.  However, modern researchers have determined that POTS is not caused by anxiety.  It is caused by a malfunction of the patient's autonomic nervous system.  Thankfully, in the last 20 years, researchers have gained much more insight into imbalances of the autonomic nervous system.  Some patients have fairly mild symptoms and can continue with normal work, school, social and recreational activities. For others, symptoms may be so severe that normal life activities, such as bathing, housework, eating, sitting upright, walking or standing can be significantly limited. Physicians with expertise in treating POTS have compared the functional impairment seen in POTS patients to the impairment seen in chronic obstructive pulmonary disease (COPD) or congestive heart failure.  Approximately 25% of POTS patients are disabled and unable to work.  Researchers found that quality-of-life in POTS patients is comparable to patients on dialysis for kidney failure.  *Dysautonomia International.org....Then 2017... Flash Edema episode... same feeling I had in the hospital, after having my second child, rushed to ER , more blood clot testing....  EF @ <30%. Life vest for 6 months, temp disability for 6 months , out of work, out of money,  an increase in meds, a new HF med and a Heart ablation surgery later.. my last EF was @35-40%... I have another echo in January 2019. I'm back at work . Living life pretty normally, I record my BPs daily and weight, and watch my salt. I have Heart Failure. Drs. tell me I had it in 1988 after my first baby, and probably never fully recovered, then with second pregnancy, it left  a lot of damage to my heart thus having Chronic Heart Failure now.  Also ,I have a HIgh ANA tier , diagnosed with an autoimmune disorder called  (MCTD),Mixed Connective Tissue Disorder.    Mixed connective tissue disease (MTCD) is a connective tissue disorder. MCTD is used to describe what may be an overlapping group of connective tissue disorders that cannot be diagnosed in more specific terms. These disorders include systemic lupus erythematosus, polymyositis, and scleroderma. Individuals with MCTD have symptoms of each of these disorders including arthritic, cardiac, pulmonary and skin manifestations; kidney disease; muscle weakness, and dysfunction of the esophagus. The exact cause of mixed connective tissue disease is unknown.    { Eye roll. Yeah... I know. Right?}
Why do I tell you my story?? Awareness Matters!!! You must advocate for yourself ! If something doesn't feel right...Get checked out, right away. No one knows you, like you do. Do not be intimidated by anyone that might make you feel you are wrong about your own body.  Advocate for others! Tell your story, You never know whose life you might save. I once told someone my story, and she was able to tell a friend that had symptoms and her PPCM was caught early! She is now fully recovered! Advocate!
So I celebrate me today. My Heartiversary. I am still here. I am still living life. My 1988  baby girl is having a baby girl herself!  I will soon be a Mimi!  I will continue to advocate! Love you ALL my Heartsisters!! <3   #savethemommies #ppcmawarenessproject