Fearing Freedom

New to This Mommy’s Heart? Check out my story from the beginning here – My PPCM Story

**Post Contains Graphic Image – I debated whether or not to include this warning. There were probably more people offended by my breastfeeding pictures but oh well…**

Besides some residue droopiness, by NYE I was pretty much back to where I was before the stroke.

Laps with stroller
My time in the hospital wasn’t just exhausting for me

I celebrated the new year with my husband, cheesecake and sparkling cider. Not a horrible night if I hadn’t been in the hospital.

New Year's Eve in the hospital
Sparkling cider

I couldn’t commit to staying up until our New Year so we watched the ball drop on CNN at 9pm. We went to bed that night thanking God for the new year. A year I didn’t know I would feel so blessed to have.

On New Year’s Day I was feeling great. I ate a ton of food, watched college football with my family and walked a record 14 laps around the floor that day. The next day was more of the same, I worked with PT doing a 6 minute walk test and some standing balance exercises. I did a bit with OT as well but I was able to do most things so their visits were getting less frequent.

Hospital beds make awesome car ramps
Attempting some skin to skin time

Given how well I was doing, my team decided it was time to make the next step towards getting me home which was ordering my Freedom Driver. I had a lot fear and anxiety about going home with the TAH. Having a device inside your body that is keeping you alive is scary and there are so many complications and issues that can occur (internal bleeding, strokes, the electricity turning off) and not being in the hospital environment is terrifying. To help with this anxiety, I continued taking Ativan but medicine can only help so much and it was all a lot to take in.

What is a Freedom Driver?

The Freedom Driver can be worn in a 13.5lb bag as a backpack or shoulder bag. Once you reach discharge criteria, you can leave the hospital with the Freedom Driver and live your life fairly normal. At least more normally than it is living in the hospital. It is powered by two lithium batteries that can be charged in a normal electrical outlet or a car charger. Being able to keep your Freedom Driver charged is important, so they require you to call your electric company before you move back home so they can place you on a special list of clients who are top priority for getting their electric turned back on during an outage.

Luckily, that night I had a few things to take my mind off the impending Freedom Driver transition. That day some friends had dropped off a gift – the entire Harry Potter series! I had never read it but it had always been on my list. This series became a big part of my evenings with my husband for the next several months. The biggest distraction, however, was that this was the first night that my daughter got to stay the night with us at the hospital! It was so nice getting to have her stay overnight with us and having some alone time with my newborn.

The complete Harry Potter series

**Graphic Image Warning**

Drivelines for Total Artificial Heart
My drivelines in the middle of a dressing change
Just enough room for a pack n play

Throughout all of this I was having several meetings with a grief counselor and psychiatry. I was started on a low dose of Zoloft and was given some recommendations for coping mechanisms. You know what else is good for those not so happy days, sunshine! Well there isn’t sunshine in Seattle in January but I did settle for going outside on an overcast misty day for the first time since the wee hours of Thanksgiving.  Two of my favorite ARNPs were shocked to hear that I hadn’t been outside in such a long time and decided to take me for a wheelchair ride to the third floor balcony for some fresh air. It was weird being outside the hospital after being in for so long. I enjoyed being outside but I also felt a strong desire to go back inside where it was safe.

On January 5th the big switch over occurred and I was transitioned to the portable Freedom Driver. Another step closer to home. So how did it feel when they unplugged my TAH drive lines from the larger machine to the Freedom Driver? From what I remember, the first feeling was that a pocket of air had been sucked out of the middle of my chest. I didn’t fell bad but I just felt weird. They said that, especially with the Freedom Drivers, each machine has their own personality. I don’t think my Freedom Driver liked me very much. Right after they switched me over, my blood pressure and TAH fills were way too high so they increased my heart rate to 140. Due to my high blood pressure, I started having a horrible headache and they started me back on a blood pressure medication called hydralazine. 

Freedom Driver equipment
Freedom Driver Gear – A backpack, carrying bag, accessory bag to hold two Freedom Drivers, 6 batteries, battery charger and multiple other things including many external power adapters.

The next day I still had a headache but it eventually went away by mid-day. When my doctors came in to check on me, they were not happy with how high my fills were. They contacted the VAD coordinator and she gave me the choice to switch out my Freedom Driver for the larger machine I was previously on or switch to my back up Freedom Driver. She explained it would be a step back if I went back to the old machine. I always wanted to be moving forward so I decided to go with the back up Freedom Driver.

This time, along with the VAD coordinator, my husband helped unplug me from the Freedom Driver into the back up. During this switch I didn’t feel very much and my fill levels improved significantly. That night my husband and daughter stayed with me at the hospital again. We spent an exciting night watching the NFL playoffs and reading a chapter of Harry Potter.

So, remember all of that stuff I just told you about the Freedom Driver? Well, don’t worry about it, because on January 7th I got the news that a priceless gift was on its way.

133 thoughts on “Fearing Freedom”

  1. Thinking of you Jen and sending every bit of positive energy I have your way. Giant hugs for you, your beautiful babies and your family ❤️

  2. Jen I’m so glad you shared your journey! You and your family are so special and we are so grateful to have been on part of this journey with you!

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