PPCM Changed My Life: My Fight Isn’t Over, I’m a PPCM Survivor!
Editor's note: This is part 3 in a 3-part series. Check out part 1, PPCM Changed My Life: I Don’t Have Heart Disease – or Do I?, and part 2, PPCM Changed My Life: I Almost Died - UNNECESSARILY!
Now for the conclusion! My life was a roller coaster from 2017 to 2018. I went from super excited about being a newlywed and finding out I was going to be a mother again to fearing for my life. Then, I was in end-stage heart failure.
My concerns about fluid constantly building up around my lungs seemed to be ignored until I developed deep vein thrombosis (a blood clot in my leg). The clots started breaking apart and traveled to my lungs and heart. Thank God I was taken to a different hospital. This team literally saved my life!
Advocacy is key
Guardian angel and sister
I met the doctor who was my guardian angel and sister in advocacy. She listened to every concern and made sure I felt comfortable with everything. During my follow-up appointment, we discussed the importance of seeing a cardiologist who specialized in advanced heart failure.
I trusted her
She encouraged me to get additional screening for an implantable cardiac defibrillator (ICD) and to see if I could get either a left ventricular assistance device (LVAD) or a heart transplant. At that point, I was not pro-transplant. I was still grasping the fact that I had end-stage heart failure. But I trusted HER! She had already proven to be my advocate.
Things got bad
It was like the opening to (and I’m about to hint at my age a little – lol) the show Gilligan’s Island. What should have been a weekend stay turned into a month-long visit. That’s right! I got tested, but no one knew how bad things had gotten.
I joked with my doctor that she set me up, but I honestly don’t regret how things happened. It was painfully clear that I was in the battle for my life. I already had to get an ICD, so I knew my condition meant my heart could stop at any moment. What I didn’t understand was that I was facing HOSPICE!
The battle royale
An easy choice
Already facing a TKO, I found out I wasn’t eligible for a transplant. My antibodies were too high. This means I would reject almost every heart. So, it was either an LVAD or hospice. For me, it was an easy choice. I had a new husband and my children to consider.
Major lifestyle change
This was going to be a MAJOR lifestyle change. It meant bed rest for 3 months and at least one 24-hour caregiver until further notice. The activities that I loved doing with my family like swimming and roller coasters would be no more. I wouldn’t be able to care for my newborn in certain ways because of weight restrictions.
Let’s not even talk about trying to be intimate at least for a while – but who knew how long that would be. There were conversations that I NEVER DREAMED OF HAVING! But I refused to go down without a fight.
Not over until it's over
The rehab journey
Working hard with my physical therapist included 3 months of cardiac rehab and then doing my own low-impact workouts. I would get back to normal or maybe define my own NEW normal no matter what! My team and I arranged a second opinion at a different facility to discuss a transplant. I was finally listed!
Thank God I made it
I went through a procedure called desensitization to lower my antibodies. It didn’t work as expected, but the hospital found two possible matches twice. Then, out of the blue, my LVAD stopped working! This usually means an immediate transplant, LVAD exchange, or being on life support. Yet, in the midst of the madness, there was a miracle. My heart showed signs of recovery! Three years of using my LVAD and following new medications paid off! Is my battle completely over? It’s too early to tell, but I AM A PPCM SURVIVOR! Thank God I made it!
Have you shared YOUR heart failure story with us yet?