Heart Failure and Family Fun...

So, because everything happened all together, and so quickly, I don't often tell the story of the whole "heart failure" part of my pregnancy. It really is kind of a crazy story, and I don't know that I've ever put it in this perspective, so here goes...
I was sick during my pregnancy. I mean, you should have seen my ankles. I did makeup for a film shoot in Arcadia Valley, and by the end of the shoot, my ankles looked like soccer balls. Everything was chalked up to high blood pressure, and eventually, preeclampsia, and I was hospitalized on bed rest at MOBAP at 32 weeks. At just shy of 34 weeks, I had some visitors--if I remember right, it was Margaret and Lynn Renaud, and they made me laugh so much that my blood pressure HIT THE ROOF. The doctor came in the next morning, swearing a blue streak that no one had called him, and Hannah was delivered via C-section at 34 weeks. I was relieved--I was the size of a house (the weight hit me very quickly once I went on bedrest; up until that point, I'd kept in fabulous shape, even as a plus-sized pregnant woman), and was having brutal headaches. They delivered a beautiful, totally healthy Hannah Elizabeth Gayle Cooley, and the world was mine. I'd never been so happy.
Strangely enough, my blood pressure didn't get any lower. They'd promised that the only cure for preeclampsia was delivering the baby, but mine stayed high.
How much do you blame on doctors, who said my symptoms were the normal problems that pregnant women have...who said I was just a nervous new mom?
How much do you blame the patient, who knew something wasn't right, but who didn't stand up for herself?
Is there any blame?
I couldn't breathe.
I'd known since I was 7 months pregnant that something was off--I couldn't sing. I'd had a history of an arrhythmia in college (written off as stress) and was born with a mild mitral-valve prolapse (which remains just fine); I have a frightening family history of heart problems. BUT babies put pressure on the diaphragm. The heart works 30% harder during pregnancy than any other time. I was tired--but I was PREGNANT. There were too many symptoms that sounded like something else, and I guess I fell through the medical cracks.
I couldn't sing for months leading up to her birth (though God knows I tried!).
After Hannah's delivery, you could watch my heart beat through my nightgown. I know, because my sister told me so. I barely remember--evidently, my oxygen levels got so low when everything happened, that I lost a few chunks of my memory. I don't remember most of the 2 weeks I spent at MOBAP before I delivered.
I remember the night I had Hannah, they finally let me drink something, and I drank a 2-liter of Ginger Ale (Hey, I was thirsty!). The next morning (10/31), before they released me to get out of my hospital bed, I was paranoid because no one had changed my catheter, and I knew it had to be overflowing. It was empty, but no one thought anything of it. On November 1, 2006, I was unusually breathless, and I felt awful. I'd just had a C-section, so no one thought it odd that I was exhausted. I was really swollen, but then again, I'd had major surgery. I was so tired that when David and Billie said they were going to the NICU to give Hannah her next feeding, I opted to stay in bed. I told the nurse I was really having a problem breathing, and she told me I needed to "take a walk-it's just gas from the surger."
Mind you, this nurse had just told me she was (her words) "super nurse," and had been a nurse for YEARS. Yeah, well she missed this one, let me tell you. The next health care provider that says they're "super" anything, I'm RUNNING in the other direction!
I went for a walk, but I had to have help, and by the time I got to the NICU, I couldn't stand up. The nurses sent me back to my room, and they knew something was wrong. I got back to my room, back in bed, kissed David goodbye (he had to tend to the dog), and by that point, Mom was back.
I couldn't breathe.
I started to cough.
I couldn't stop.
I'd just had a C-section--and that hurt like hell.
I couldn't tell my mom that I couldn't STOP coughing; couldn't call for help; I don't know how many exciting colors I turned, but I'm sure it was cool. My mom immediately started to pray (at this point, Margaret Renaud came up to visit Hannah and myself, and didn't get very far; she saw my face, and knew to start a prayer chain. Between her and my mother, I'm convinced their prayers saved my life). The nurses were in the middle of changing shifts (I have the world's worst sense of timing) and it felt like forever for a doctor to come to the room. My sister happened to be wearing scrubs, so he yelled at her to get a chest x-ray, which was actually quite funny...but I couldn't breathe or stop coughing long enough to laugh. By the time they got the x-ray, my lungs were on the verge of collapsing, as they were entirely full of fluid.
My heart was three times the size it was supposed to be.
My left ventricle took the day off.
I don't remember the thoughts that went through my head; I do remember thinking my mom was terrified and that I wouldn't be around to raise my child. The irony of those thoughts does not escape me.
I sat at Hannah's hospital bed 25 days later and tried to exchange my life for hers.
God did not accept my terms.
Back at 11/1/06, the doctors catheterized me (AGAIN!!! AAACCK! 3x in 2 weeks!!!), ran me through some exciting tests (Hey, I have a heart monitor! It's been on for 12 hours! What do you mean, the signal didn't transfer to the third floor???? Seriously--that happened. What, they couldn't check that when they first hooked me up?), and then the real fun began. My lungs ate all of my bodily fluids, so my veins collapsed. I stopped counting after it took 3 or 4 or 8 people to finally get a vein to put my IV into...so they could give me the meds to take over 30 lbs of fluid off of me in one night. My oxygen saturation levels dropped down to 74, at their worst, which made them think I might have had a stroke (I didn't, miraculously), and did make them perform a new kind of torture called an arterial gas test. During this test, they attempt to put a knife through your wrist. No, seriously, they have to get the oxygen readings from an artery in your wrist. It hurt worse than the coughing, and at that point, I finally cried.
The left ventricle of the heart is the busiest. Mine decided to start functioning at 10% (a normal LV functions at 55-65%). That was, um, stupid.
At my echocardiogram the next morning, my technician was a woman who had part of her face covered, so I couldn't see her expression as she read my test...but the head-shaking told me it wasn't good. Something tells me that's an international gesture.
I don't know what the doctors told my parents. I know they told my husband absolutely NOTHING, which is also, um, STUPID.
What they told me sounded like this:
"Well, um, Ms. Cooley, what we think is that you have a rare condition called Peripartum Cardiomyopathy with Congestive Heart Failure and Pulmonary Hypertension." I've learned a lot of cool medical lingo since this incident, and that makes me sound uber-smart.
What they didn't say is that I narrowly avoided death/heart transplant/a very boring life spent with no physical activity...
They didn't say that I would be told I shouldn't have any more children; in fact, my cardiologist totally chickened out of that one, and sent me to a perinatologist who broke the news.
They didn't say that no one had bothered to research PPCM in over 30 years, in spite of the fact that it's on the rise.
They didn't say that they didn't even consider that diagnosis in the first place, because it's thought to be a primarily African-American disease.
They couldn't know that in 2008, I met a cardiologist in Lexington, KY, who has done extensive research on both preeclampsia and PPCM, and that he is the first doctor who gave me a much happier outlook on future children. He's taken part in the first study in over 30 years that was inter-racial and focused on PPCM with future pregnancies.
Can I have more kids? Yes. I have bi-annual run-ins with my cardiologist, and he has informed me that I'll be "high risk," but we can do it. Am I taking way better care of myself? Well, Halloween candy aside, yes. I'm actually a spokesperson with the American Heart Association, and though it's kind of on a hiatus right now, it's really educated me about heart health being for everyone (not just old people). I have been told there is scarring on my heart, but never to what extent; I hope to get a bit more information on that subject in December.
So, there's the story. Heart failure = One. Bad. Day. I currently take 1 tiny little pill to keep my blood pressure in check (which is miraculous--most heart patients have a menagerie of meds) and get acupunctured on a pretty regular basis. I also skip the salt (sorry, McD's) and have done a lot to educate myself on being a proactive patient. I encourage people of all ages to pay attention to their hearts, because the signs are subtle and easily written off.
Looking back, if I would have had the chance to trade my life for Hannah's, it's an easy decision: Take me. I don't know why God chose to take her, and keep me here. I don't know what He is or was thinking, or how His plan for my life will unfold.
While I'm here, though, I will be thankful.
Four years ago today, I almost died.
Somehow, my appreciation for my life has been affected by the pain of Hannah's death, so my "miracle" doesn't really get the celebration from me that it deserves. It's usually followed by my inner sarcastic punk saying "Okay...and Your point is?..."
He has reasons for everything, so I will keep following Him one step at a time. He is, after all, in the business of healing broken hearts, and I am no exception...