Heartbreak warfare...

Hey there.  Let's just pretend I have blogged more than once in the last month.  Fortunately, I have come back to the blog equipped with a great post from yet another sorority sister.  (Oh, you didn't know?  You have to be initiated in the mystic bond in order to post on this blog.  Truth.)

When I first had The Incredible Hulk, I remember breaking down (in one of my many hormonal tizzies) and telling my husband, "I mean, it's bad enough to have to do this when I'm exhausted.  But, what if he gets sick?  What if I get sick?  WHAT IF WE BOTH GET SICK AT THE SAME TIME?!  I can't handle it!  I can't!"

I tell you this so that you know how in awe I am of my guest poster today.  First, Ashley wowed me with her beautiful home:

That is her living room.  I DIE.

Then, she wowed me with her courageous post about fertility struggles.


And, of course...she floored me with her big nursery reveal:

Are you KIDDING ME with the argyle?  LOVE.

But, hearing the amazing story of the birth of her daughter and everything that followed it was when I knew this had to be one of the strongest women I've ever known.  So, I've asked her to share her story here with you today.  It's a long story.  But, if you're like me, you'll hang on her every word.  It might scare you.  But, let's be honest.  All things about having children are scary, and fortunately, this particular condition is one that only occurs in 1 out of every 1300 - 4000 pregnancies.  Read on.  You'll be glad you did.

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The happiest moment in my life will, coincidentally, always be linked to the worst time in my life.

On January 17, 2012, my daughter Audrey was born. Six days later I was diagnosed with a pregnancy-induced form of congestive heart failure known as post-partum cardio myopathy.

I realize I am now a pregnant woman’s worst nightmare (my sister-in-law is pregnant and my father-in-law has reached a new level of paranoia). But I’m not writing this to scare – I’m doing it to educate. I had never heard of PPCM, and I think it’s safe to say that most people haven’t either…and sadly, some doctors and nurses fall into that category as well.

Post-partum cardio myopathy is a disease that affects the heart’s left ventricular ejection fraction (basically you don't produce enough oxygen for your body, causing your heart to work overtime and become enlarged). While what causes PPCM is predicted to be hormone-related, what the actual trigger is, is unknown. What is known is that PPCM starts somewhere between the last month of pregnancy and the first five months post-partum. Somewhere between 1 in a 1,000-4,000 women in the U.S. are diagnosed with this heart disease.

As for me, I had a pretty textbook pregnancy, and then around the 34-week mark, things started to take a turn. It started with swelling and weight gain. While these are two common side effects in pregnancy, mine were drastic. My feet, ankles and legs ballooned up overnight, and in less than 2 weeks I gained 20 pounds (prior to this I had only gained 25). When I talked to my doctor about this, she told me it was normal, that my blood pressure was great and I had nothing to worry about.

Two days after 36-week appointment, I developed a cough. I thought nothing of this because there was a cough going around work. Each day though, my cough and energy level got worse. It got to the point where I had to take breaks on the stairs in my house and getting up to go to the bathroom was absolutely exhausting. My airflow was dropping dramatically.

I knew something was wrong three days after the cough started. That night in bed, each time I tried to recline at all, I felt like I was drowning and wasn’t able to breath. I would quickly sit back up and gasp for air. My chest felt so heavy, like someone was sitting on it. I ended up staying up all night watching TV, because it was just easier.

That afternoon I went to labor & delivery and was monitored overnight. While I had various symptoms – cough, couldn’t breathe, won’t recline below 90 degrees – I was diagnosed with preeclampsia, discharged and put on bed rest until my induction date 8 days later.

The next day, Audrey was born. I could write a novel about the drama of that day alone – but the take-home lesson is this: if you don’t think something is right, listen to your gut and speak up. That decision most likely saved my life. After 8 hours of labor, I was seeing spots, on oxygen and yet completely out of air. I still couldn’t tolerate lying flat. I knew I was not well and something was wrong, so I started asking for a c-section. One of the RNs kept telling me I should do what’s best for “you and the baby” and to keep on pushing.  [Editor's Note:  Is it just me, or does everyone else want to square up on that nurse right now?] Thankfully, my doctor showed up soon after that and honored my request after taking one look at me. I was so grateful, I passed out.

The first thing that happened after the c-section I don’t remember was getting chest x-rays done in the recovery room. Once that was situated and I was put back on oxygen.

I was in labor & delivery for 5 days and no one really discussed my x-ray. A respiratory therapist visited me twice a day, and each one said something different  – I didn’t have pneumonia; I have the beginning stages of pneumonia; I definitely have pneumonia. The only general conscience was to do my breathing treatment every hour and to take my antibiotic.

The day Brent, Audrey and I went home – I knew something was wrong again. The night before, I went off the hospital pain meds, and once again couldn’t lie flat. My condition wasn’t improving, it was getting worse and this realization had me in constant tears. The doctors and RNs assured me that post-partum anxiety and blues were completely normal, and we left the hospital

Four hours later, Brent and I left Audrey with the grandparents and went to the ER. I lucked out with an amazing ER doctor – he actually listened to me about my symptoms. After a chest x-ray, EKG and cat-scan, he found an extreme amount of fluid in my lungs. I was then admitted into the hospital and started lasix (this is a pill used to get ride of access fluid in your body.) 

Ashley, Audrey, and Brent, after Ashley had been readmitted to the hospital.

Taken less than a day later,  one week after Audrey's birth.  It is estimated Ashley lost 6-10 LITERS of fluid.

I naively remember thinking that next morning that I would soon be released from the hospital and life could resume to what it should be with a newborn.

My confusion started when I met with a cardiologist the following morning and realized I was on the cardiac floor. She explained to me that I would be having an echocardiogram done to rule out a rare condition called post-partum cardio myopathy. I tried to listen to what she was saying about PPCM and the success rates, but I couldn’t – my mind was racing and I kept thinking “why are you telling me about this, if it’s rare.” Then she said something that made me freeze – if I do have PPCM it is not recommended to get pregnant again.

Once it was official and I was diagnosed with PPCM, the only thing I could think about was that I couldn’t get pregnant again. Brent and I had just started a family, and all ready doors were closing. It wasn’t until several days later, when I met with the transitions life coach and she handed me a book on congestive heart failure that I truly saw the bigger picture in what was happening to me. She started talking about my new low-sodium diet, but I just kept staring at the pictures in the book – they were all senior citizens. How was this fair? Why was this happening to me? It took us a year to get pregnant, wasn’t that pain enough?

It took me 3 days in the hospital, before I had the courage to google my condition. I was so terrified I’d read something about low survival rates or a shorten life expectancy – I just couldn’t do it. Fortunately, all the statistics were in my favor. With proper medical care, 95% of women diagnosed with PPCM survive, and 50% make a full recovery.

It’s now been 4 months since Audrey was born, and I still don’t know which category I will fall into. While my heart’s ejection fraction has improved 6-10%, it still has a long way to go and the moment my heart stops improving (if it hasn’t reached 40%), a pacemaker is in my future. No matter which direction my health goes, I have a long road ahead of me and I want that road to include educating the world on PPCM.

Last year in Ohio, an 18-year-old girl died of PPCM. She went to the ER 3 different times over the course of a month and each time she was told she had the flu. By the time she was given the proper diagnosis, she was already in a coma and passed away shortly after. This poor girl should still be alive. She did everything right, but her doctors failed her.

It’s my hope that by spreading the word, others don’t have to die. If you are pregnant (or were pregnant less than 5 months ago), know the warning signs for congestive heart failure: cough, difficulty breathing, lack of energy, water retention and trouble reclining. Also, thanks to a new study that came out on PPCM last week, we know also know that if you have preeclampsia or are carrying multiples – you’re at a greater risk of this heart disease. 

It’s important to know your risks and warning signs, because there is no guarantee your doctor will. You have to be your own advocate, and education is the key.

Check out Ashley's blog (one of my favorites.)
http://decoratingobsessed.blogspot.com