This was suppose to be a happy time, what the hell happened ?

3 min read

I was diagnosed with PPCM  after giving birth to my 3rd son on July 16th, 2013 at age 42. I have been short of breath since before having my baby, but I wrote it off to him taking up so much  room on my body. After all, he was 10lbs 4 oz. I did actually feel a little better after delivery. I quickly lost the baby weight, but i remained very tired and short of breath.

For the next few months, I declined steadily. It started with not being able to go back to work.  Money has become a big problem because I'm so far behind in billing for our business.  It then went on to the housework. I couldn't seem to muster the energy or manage my time to get things done. It got to where If I was able to keep clean , dry clothes  and food in the babies bellies, it was a successful day for me. My breathing was getting more difficult and I began gaining weight until I was back up to my  pregnancy weight. I was treated several times for bonchitis and the flu over several months.

Finally, I got a referral to a pulmonary specialist to address the repeated bronchitis. It was early December and the earliest any could see me was January. I had just finished, yet another round of antibotics and steroids. By the time i had taken the entire prescriptions, I was actually feeling slightly better. Within days of being done with the meds, I began declining again, and fast. Within a few days, my congestion was worse than ever and the stomach pain was getting unbearable. I was eating antacids like candy, thinking I had heartburn. I hadn't lay down to sleep in months. I was now on 7-8 pillows and had to contort my body in different postions to breathe at all.

On Dec 11, I had decided to visit the local emergency clinic. I knew I couln't wait until january to see a pulmonologist and I was hoping they may have one of staff. I ran a couple errands and began having such a hard time breathing, I decided to just go to the hopsital ER.  They checked my vitals and my  O2 SAT was  down into the low 80's. My blood pressure remained normal and I still had no signs of swelling in my legs or feet.

Finally, the pulmonologist on call ordered a CT scan after viewing the most recent chest xray.And running a blood test to check for possible blood clots.  After laying flat for the CT scan, I got far worse and could barely get shallow breaths. The pulmonologist was sure I had a pulmonary embolism. The CT scan was just to verify and locate it.

It seemed like forever for the doctor to come back and give me the "good news". I didn't have a blood clot in my lungs.  The bad news, my heart is grossly enlarged and weak with a lot of fluid around it. My lungs were also full of fluid. When I heard Congestive Hearth Failure, things got fuzzy. How could that be? I'm too young for heart failure.

Thiings got crazy from there.  Lots of needles and people. I had to call my BF and let him know I woudn't be home. I wanted for him to come to the hospital but of course there was nobody to sit with the kids until my older son got home from school. I debated calling my son and asking him to leave school, but I didn't want to worry him.

They admitted me hospital and pumped me full of meds to start getting the fluid out of me and scheduled an echocardiogram for morning. The results confirmed I am suffering from acute heart failure and my EF rate is only 15%. I would be remianing in the hospital for several days.

It's been a little over a week now and I'm home with more questions than answers. I'm angry at all the wasted visits and time, treating a bronchitis and a flu that I apparently never had. I'm as tired as I've ever been. I'm confused and having a hard time finding answers. I think my cardiologist is competent, he had quickly identified PPCM as soon as he saw the CT scan results. He is at least familiar with my diagnosis. Why were n't the other doctors I've seen all this time ? Why was there a delay in finding this, until I declined so badly. Could I have been facing a couple of days of rest and now I'm facing a longer recovery time?  How am I going to get through each day ?

I moved to New York from Maine in 2008. I work from home, and haven't had a lot of opportunity to meet people. Many I have met, don't have time to get to know me, or they don't care to.   I'm trying hard to stay optimistic, but I'm worried about the mounting bills, and l wish my family and friends were closer, I could use their support right now. I have not been able to rest as I know I should, and I don't see that changing. I'm worried this will delay my recovery and be harder on my family.

I'm a fighter, I know I will get through this

My Details

  • Date Diagnosed: 12/12/2013
  • Child: 3
  • Initial EF: 15%
  • Current EF: 39%

Story By Carrie LaRoach

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