An update on yours truly

As you may recall, I'm a post-partum cardiomyopathy survivor. This is a fancy way of saying, I'm a mom who went into congestive heart failure during pregnancy, almost died and is still living with heart failure. You can find my PPCM story here and you can read about my exciting pacemaker/defibrillator journey here.


I had my one year post-implant cardiology appointment yesterday. It was a 3.5 hour, emotionally draining appointment.

First, I met with the pacemaker reps, who checked my readings for the last 8 months. I didn't realize what an invasive feeling that would be. It's just heart rhythm charts, but it's your heart story from the last 8 months. It's weird. Then when only halfway through, the rep found something interesting...and called another rep in. (Always, a comforting thing).

Then I was asked what I did on July 19th, as I had some "noise" in the morning. This freaked me out, because I have trouble remembering what I did the day before. Then I realized I didn't even know what "noise" was. After learning, noise is an external force that sends warning type signals to defibrillators, I didn't feel any better. What the hell was I doing? Was I drunk and playing with metal detectors? And while I knew that wasn't the case (as classy ladies do not get drunk in the morning and I have no access to a metal detector), that's all I could think about when the rep figured it out.

"This is completely random, but did you happen to be swimming or at Lake of the Ozarks?"

And that's when I remembered. Brent, Audrey and I went up to Stockton Lake that day to go sailing with some family friends. That morning, while the boat was being cleaned – we were swimming in the marina. Apparently, while I had happy memories of this day, my defibrillator reported a different story – as it was picking up faulty electricity on somebody's boat. I was assured that while I was fine this time around, I could very well get shocked the next time. Awesome.

Then came my least favorite part, my device going through all its rhythm options. My device is fancy and offers 12 different heart rhythm/pacing options. (Well, really 11 now, because one them brought my to the ER because the wire is on a nerve causing me to spasm every 10 seconds. Just a tad awkward for day-to-day functioning). The rhythm test lasts about 5 minutes, and in that time your heart beat keeps on changing. It's strange and it leaves me exhausted several hours later. But I'm now rocking a completely new heart rhythm...so I guess that's exciting?

Next came my appointment with Dr. M. I'll be honest, I've been dreading this appointment because I haven't been feeling better lately. I've actually been more tired, lowish-energy, dizzy, lightheaded and out of breath than usual. With heart failure, these are not good symptoms to acquire. His solution was increasing the dosage of the only medicine I wasn't maxed out on. But he wanted to see what my echo would bring.

I spent the 30-minute echo preparing for the worst and trying not to cry.

And then Dr. M came back into my room, and told me something I never expected to hear.

"Your results are great. Actually outstanding. You're at 50-55%, and in healthy heart function."

I processed this for a few seconds, and then started sobbing some ugly tears. Of the PPCM survivors who do recover, the majority recover within the first year. That first year I only recovered 6%, followed by 11% the second year. The fact that I went up 15-20% my third year is just unbelievable.

As for my unfavorable side effects, I'm on too much medication now. The new plan is to divide my medications between day and night and see if that helps at all. Cutting back on medications too soon is a risky way to relapse, so that is a last case scenario.

There's no guarantee I'll get all my energy back or feel like old self ever again. And I'll probably be on medications the rest of my life. But I now have a normal life expectancy, and my pacemaker/defibrillator surgery now feels completely worth it.

I can explain...

My lack of blogging has been extreme, but I have the best excuse ever. I got a pacemaker.

See. I wasn't joking.

Well, really it's a pacemaker/defibrillator combo, or if you want to get really specific a Cardiac Resynchronization Therapy Device (CRTD).

At my cardiologist appointment in September, I learned my heart hadn't improved in the past year. And with that, I decided that it was time and that I was ready. Plus, my risk of dying was a tad higher than I would prefer (1-10%). (If you're new to this blog or have just forgotten, you can read about my experience with post-partum cardio myopathy here).

So on November 6th, I had a 4.5 hour surgery. What I didn't know before said surgery was that they keep you in "twilight" during it, so I spent the surgery listening to Pandora. I remember waking up at one point during the surgery because my Pandora stopped, and I asked someone to turn it back on. And sadly, the other part I remember is when the defibrillator was being tested and I started crying and saying I hurt. Thankfully, I was knocked out for good shortly after.

My recovery was really difficult. Not because of the pain, but because I was completely helpless. Aside from not being able to lift more than 5 pounds, I also couldn't lift my left arm above my heart – which meant this left-handed girl was helpless (I couldn't even put my hair in a ponytail by myself). And these restrictions were for a month. So Audrey spent the month with her grandparents, and my wonderful friends provided meals every night.

It's been a little more than 2 months since my surgery, and minus a fun ER trip right before Christmas (one of my wires shifted and hit a nerve), I'm doing good.

Even my scar is looking good. My surgeon had me wear a bra to the operating room, from there they traced the strap and sad my incision would be between that. Only a female doctor would think of such awesomeness.

6 weeks

I can't believe that Audrey is 6 weeks old. In honor of this milestone, we had a penguin party.

This milestone also means that I've been diagnosed with post-partum cardio myopathy for a little more than 5 weeks. I'm doing better adjusting to my new reality. While the echo I wrote about in my last post didn't go as well as hoped for, I am still improving and I just have to keep reminding myself of that.

Brent and I purchased a treadmill a week ago, so I can stay active. And last Saturday my LifeVest came off, which was the best gift of all.

Thank you so much for all your thoughts and kind words.

Meet the power pack

Meet my current fashion accessory:

Yep, this is my LifeVest. I wear it 24/7...unless I'm showering.

The middle part is what's on my back and then the straps snap in the front. The 4 circles are sensors that monitor my heart rate, and the 3 gray rectangular things are the terrifying defibrillators that will shock me if my heart get out of line (if I don't respond to the warning alarm within 30 seconds). The cord going off the bottom of the photo connects to a "battery purse" that I wear around. I think it looks like a binocular case, so I just pretend to be an avid bird watcher.

Yesterday morning, my warning alarm sounded for real while I was sleeping – not only scaring the crap out of me, but also leaving me in quite the funk. Then it did again last night, and again today while I was trying to nap.

The connection between all 3 events? I was sleeping on my left side.

After a phone call to my cardiologist and to the LifeVest company, all is fine. Apparently, the sensors aren't registering correctly at times when I'm on my side and it's giving off "artificial readings." Because of this, I earned a sympathy vote from my cardiologist though – so my echo is being bumped up to tomorrow from Monday.

So, please send any positive heart vibes this way...and hopefully I'll be able to ditch the vest.

Groundhog Day update

Happy Groundhog's Day!

Audrey is now 16 days old and doing great.

As for me, I've been out of the hospital since Friday. While I'm nowhere close to 100% (and who knows if I ever will be), I am getting a little more energy and strength each day. I had my week follow-up appointment with my cardiologist today, and she's impressed with the progress I've made so far. She even reduced my hormone medication to once a day (granted I'm still on 5 different ones – but I'll take any reduction I can get). The real test will come on Feb. 13th, when I have my next echo. Hopefully after that I can say bye bye to the LifeVest.

Audrey's birth story and my health

While the story isn’t over yet, I wanted to share what was going on with me.

Thursday, January 12
I came home from work with a fever and was wheezing.

Sunday, January 15 (Hospital Day 1)
My breathing difficulty was getting worse, so my OBGYN on-call doctor told me to go to urgent care and get my lungs listened to. At urgent care, my blood pressure was out of control and we were told to go straight to the hospital.

I was checked into L&D. My blood pressure was nowhere as high, but the hospital decided to do a 24-hour urine test. As for my difficulty breathing, I was put on an antibiotic to get the “yuck” out.

Monday, January 16 (Hospital Day 2)
I was diagnosed with early stages of pre-eclampsia and given the induction date of Tuesday, January 24. I was released from the hospital and put on bed rest for the week.

Tuesday, January 17 (Hospital Day 3)
I went back to the hospital this morning after some blood gushing. My doctor decided the baby wanted to come and broke my water a little after 1 p.m. Within 10 minutes my contractions were already 3-4 minutes apart.

The biggest issue was my breathing and coughing. I lasted 90 minutes (4 cm dilated) without an epidural. Sadly, I had some epidural drama. The first one did not go in well at all. I could still feel everything on my right side. The anesthesiologist clearly knew something was wrong, because he hung around for about 45 minutes. He fidgeted with the needle after that, and it didn’t get better, so he had to redo the entire process. The second epidural stayed in my system for about 90 minutes, but after that the pain returned and didn’t go away – even with several redoses.

I started pushing around 9 p.m., so about 8 hours later. Instead of taking breaks between pushing though, I was coughing and spitting up mucus and trying to catch any breath that I had left in me. I just knew that something was not right. After about an hour my doctor was paged. Before she arrived though, another RN came in to help. At this point, I was begging for a c-section and the new RN kept telling me to keep on going – how it’d be better for me and the baby. The new RN tried to put an oxygen mask on me, which I’m too claustrophoebic for and started freaking out even more, which made my breathing even worse. During the pushes at this point, they would lower the bed for the push positioning, which made the coughing even worse and my pushes got weaker and weaker. Then they'd raise the bed so I could cough and attempt to get any air I could.

Thirty minutes later, I had so little air that I was seeing spots and close to passing out. When my doctor walked in, she offered me a c-section in less than a minute.

Everything else that night is a blur. I had epidural #3, but I was so exhausted, I fell asleep on one of the doctors holding me up. I didn’t even realize I had been strapped down. I don’t remember Brent coming into the room or even really hearing Audrey cry. When Brent was holding Audrey, I took one look at her, smiled and passed out. Audrey was born at 11:38 p.m.

Wednesday, January 18 (Hospital Day 4)
While in the c-section recovery room, I got to hold Audrey and attempt to breastfeed her in between coughing fits and a chest x-ray. Brent and I were busy loving on her, and the grandparents stopped in to see their first grandchild. I was on oxygen and getting blood drawn while Audrey and I were having some skin-to-skin time.

The RN was having some difficulty with drawing my blood (didn’t really have a lot of desirable veins left), so I started paying attention to the abuse of my hand. Then Audrey made this alarming noise, I looked over at her and see her turning purple. The RN grabbed Audrey and ran out of the room with her.

I’m not sure how much time passed. Probably only 5 minutes, but it felt like a lifetime. The RN returned and told us everything was now fine. Audrey did stop breathing, but her heart was still going. She was now admitted into NICU.

When Brent and I woke up that morning, we got wonderful reports on Audrey. So, the new focus was on getting me better. I was still on oxygen and having breathing treatments.

That night, I finally got to see Audrey.

Saturday, January 21 (Hospital Day 7)
I was released from the hospital that night. Audrey developed a little jaundice though, so we boarded at the hospital since she was being released the following day.

That night I got worse. The coughing and breathing difficulty increased again…as did the tears. At this point, I played it up to hormones and just being hospital stir crazy. It hurt to be at any form of an inclined positioned because I couldn’t get air – so therefore I couldn't sleep.

Sunday, January 22 (Hospital Day 8)
We were discharged from the hospital on Sunday. Audrey still had some jaundice, but it was improving – so home health services provided us with the necessary equipment.

That morning I cried a lot. I just assumed it was hormones and possibly some post-pardum warning signs, so I didn’t read much into it. I still couldn’t get enough air, but I thought that going home would solve that issue.

I went downhill rather quickly once we got home. Less than 4 hours later, I was back in the ER. Basically, the trip to the ER was to determine if something was actually wrong or if it was panic-attack related.

After chest x-rays, an EKG and cat-scan – they discovered a had an extreme amount of fluid in my lungs and I was admitted into the hospital to start flushing out my system.

Monday, January 24 (Hospital Day 9)
Audrey update: Audrey no longer has jaundice!

I had an ECHO in the morning to determine the cause of the liquid.

I was diagnosed with Post-Pardum Cardio Myopathy. In a nut shell this means, pregnancy weakened my heart and it’s become enlarged and can’t function correctly.

While it’s looking like I’ll make a decent to full recovery, things will no longer be the same. This is a condition I will always have, which means I’ll always be at risk for congestive heart failure. I’ll most likely be on heart medication the rest of my life, and on a low-sodium diet to prevent future liquid build up.

Another heartbreaking change is that I won’t ever be pregnant again. Since pregnancy caused this issue, getting pregnant again will make my condition worse and likely lead to a form of heart balloon or other heart surgery. Definitely not worth the risk, but a lot of tears were shed.

Tuesday, January 24 (Hospital Day 10)
Not a whole lot has changed. I responded well to the medicines I’ve been on (I’ve already lost 3 liters of liquid…yes, 3 liters). Since I’ve responded well, I didn’t need to heart cath or additional ECHO done, which was a big relief.

I’m done with my nitro drip, but back on the oxygen. And I just started taking a new heart medication to see how that goes.

When I do get to go home, I’ll be on a “life vest” for about a month. This will make sure all stays well with my heart and give me a shock if needed.

Wednesday, January 25 (Hospital Day 11)
I started a beta blocker today, and I seem to be doing well with it so far. I also met up with the nutritionist to start going over my new sodium-free lifestyle.

There's rumors I'll be released on Friday, but there's been no doctor confirmation on this so far.
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So, that’s where I’m at right now. I’ll try to keep everyone updated.

As for Audrey, both my mom and mother-in-law are staying at the house with her. So she's been in great hands being spoiled.