PPCM Changed My Life: I Almost Died - UNNECESSARILY!
Editor's note: This is part 2 in a 3-part series. Check out part 1, PPCM Changed My Life: I Don’t Have Heart Disease – or Do I? and part 3, PPCM Changed My Life: My Fight Isn't Over, I'm a PPCM Survivor!
If you read the first part of my story, then you already know my life was a roller coaster ride from 2017 to 2018. I was newly married, had a newborn, and found out I was in end-stage heart failure brought on by my pregnancy – a condition called postpartum cardiomyopathy. I thought things couldn’t get any worse, but I was wrong.
Fluid and the hospital
Following my diagnosis, I had routine appointments with my cardiologist. As much as I hated taking medication, I knew my life depended on it now, so I was consistent!
Fluid around my lungs
However, I had to go to the emergency room every other week because fluid was building around my lungs making it difficult for me to breathe. This is called pleural effusion. I was constantly coughing to the point that I was vomiting nothing but clear fluid with no relief in sight.
Seeing my doctor
I made sure to go to the hospital that my doctor was affiliated with because I did not want to take any chances. I also thought they would have my history and would make any adjustments accordingly. I was clearly not in my right mind - you’ll understand why I say that as the story goes on.
Despite repeated efforts to gain a better understanding of what was happening, nothing changed. With each passing visit, I would explain to the cardiologists on call (who, by the way, were all part of the same cardiology group) that my medication did not appear to be working. Whatever dose of diuretic (pills that remove fluid) I was given for home use was ineffective. I only got relief IN THE HOSPITAL. But NO ONE LISTENED!!!
Clarity and frustration
After about two months, I finally had enough clarity – because I did not realize at the time how much heart failure was affecting my cognitive abilities – I told the cardiologists that I also had a doctorate, which happened to be in molecular and cellular biology. I said I had already researched that I was on the minimum allowed dose of this medication.
I also already self-adjusted my medication to the maximum dose, but I still have to come to the emergency room to be admitted. DISCLAIMER: PLEASE DO NOT ADJUST YOUR OWN MEDICATIONS! I said I had more clarity – not that I was in my right mind; there is a difference. Again no one listened!
Forced to listen
One day someone was forced to listen. I went to work as I usually did, and mid-day I noticed my leg was swelling. The only time I ever had a swollen leg was when I was bitten by a spider at the age of 18. I NEVER even had swelling there during my four pregnancies. What made it worse was that it hurt to put pressure on my leg – and I already have a low pain threshold.
My own best advocate
Fortunately, I had an appointment with the cardiologist the same day to talk about getting an implantable defibrillator to replace this external defibrillating vest I had to wear given my newly diagnosed heart condition. Something told me to ask about blood clots – I honestly cannot say why. So, I mentioned it to the cardiologist who initially brushed me off, but I insisted on getting an image done. NOTE: YOU CAN BE YOUR OWN BEST ADVOCATE AT TIMES!
Lo and behold, the imaging revealed a clot. The doctor put me on a new medication and told me that I had to wait for the medication to start working. Clots have to dissolve on their own. I accepted that part, but I did not accept the pain I was in. I asked what I could do about the pain and was told to take some Tylenol. So, I was sent home in pain – pain that was getting worse and worse!
Massage and emergency
Massaging blood clots
For those who do not know, you should not massage areas that may contain blood clots because they can dislodge and travel to your brain or heart. However, when you are in pain, what is the first thing you do? Try to massage the pain away. I cannot say if I did this or not because when I got home my pain was already a 6 out of 10. I do know that I was NOT ADVISED AGAINST MASSAGING the area.
A new emergency room
Anyway, I was elevating my leg at home but had to get up to use the bathroom. WHY DID I DO THAT?! I immediately fell to the floor in sheer agony. I felt like I was trying to walk on a broken leg. I immediately asked my husband and son to get me to the emergency room, BUT NOT THE SAME ONE I was going to before. As I said, I was getting more clarity, and I was now convinced that I could not receive proper care there.
We went to an emergency room closer to my home. As I was being admitted, I gave the staff a brief history of what was going on and immediately asked for pain medication. They were hesitant at first – and for those who do not know, African Americans are often refused pain medications due to racial biases about pain tolerance. However, I was crying uncontrollably, barely able to speak coherently, and I told them my pain was now well beyond their 10-point scale.
The attending physician came in and ordered a CT scan to see what was going on. After a few minutes, I heard those words again – “You shouldn’t even be here”. WHAT NOW?!!! The doctor said that I not only had a blood clot in my leg, but several pieces broke off and traveled to my heart! I would have to be airlifted to a hospital that was only a 30-minute drive away to see a specialist and possible immediate surgery!
My heart dropped into my stomach! Here I am a new wife and a new mother again, and now I’m fighting for my life. And all of this because no one was listening. I almost died – UNNECESSARILY!
Does your heart failure impact you financially?