Did I Mention That I Lived?

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

**Warning – Post Contains Graphic Images**

but just barely

The second time coming off of ECMO was just about as fun as the first time, but at least this time it was post-transplant and I had a real heart. I remember soon after they told us there was a heart available for me, one of my doctors came into the room. She told me not to worry, but that after I wake up from surgery I would feel like I had been hit by a bus. I can confirm that this is a fair analogy.

What Is Happening?

The first day after they woke me up, I wasn’t up for much. I had spent most of the night coughing and was breathing very quickly. A normal respiratory rate is 12-20 breaths per minute but my rate was around 40-50. Still pretty hazy at this point, but I remember a doctor asking me why I was breathing so fast. I remember thinking he seemed rude but, honestly, coming off sedation I tended to dislike a lot of people.

At this point, however, I was really freaked out. All of the sedation medication really messes with your head. While I was on ECMO the second time, I kept having this nightmare that was constantly restarting over and over again. In the nightmare, they hadn’t been able to give me the heart transplant. Since I was still dealing with the grogginess of sedation, during this respiratory rate conversation I was still under the impression that I hadn’t gotten the heart transplant. People had told me that I had the surgery, but at that time my memory was very fleeting.

My husband kept telling me that they were going to think I was in pain because of how fast I was breathing. I, for some reason, interpreted this as I was supposed to be in pain. I decided to ask for painkillers so they would let me get the heart transplant. Although I wasn’t really experiencing much pain, I asked them to increase the painkillers I was getting. This still did not help with my respiratory rate.

They tried a CPAP (continuous positive airway pressure) and then a BiPAP (bilevel positive airway pressure) to help. These are both non-invasive ventilation therapies. My oxygen saturation was fine with 40% oxygen but I was still breathing really fast. Since the pain killers weren’t doing anything, they eventually gave me some antipsychotic mediation. Good call.

It’s All In Your Head

That night, the medication was still playing tricks with my head. My poor nurses – I was so out of it. I kept calling them into the room for random different things. Five times were literally because I thought I had soiled myself (I hadn’t), several times I just wanted to get up because my circadian rhythm (day/night cycle) was off and once because of those pesky nightmares (that I am pretty sure I was awake for).

The nightmare this time was a fun one. I was convinced there were two other people in bed with me. All of us were very ill and if I moved my body at all, one of the other people would die. So I called my nurse in and I asked, “are there other people in bed with me?”

I’m sure it would be a HIPPA violation but I would love to read a book written by nurses about all the weird stuff patients say while coming off of sedation.

Keep Moving

They gave me a day to rest but bright and early the second day after I was extubated they had me working with physical and occupational therapy. For about 15 minutes, I worked on leg dangles and arm/leg exercises. Later that same day, I progressed to standing, standing exercises and moved from my bed to the chair.

Did I Mention I Lived - This Mommy's Heart - First Time Up Post Transplant
If this was a video, you would see me slowly begin to fall to the side when she lets go of my shoulders. I was so weak
Did I Mention I Lived - This Mommy's Heart - Leg Dangles
Did I Mention I Lived - This Mommy's Heart - Working With OT
I was relying on my husband to put Blistex on my lips because they were dry. I had no idea he was coating me in it. I think the wonky braid brings the whole look together.

Speech therapy also came around that day and upgraded me to sips and chips (sips of water and ice chips). Who knew water and ice could be such a wonderful treat. After not consuming anything for over a week, that is definitely the most accurate description.

My day was fairly uneventful besides that. I did have some issues with high blood pressure and a fast heart rate but this is common following a heart transplant. It is actually a sign that the heart is working really well.

**Graphic Image Warning**

Did I Mention I Lived - This Mommy's Heart - Chest Tubes 1
Chest Tubes
Did I Mention I Lived - This Mommy's Heart - Chest Tubes 2

The next day my chest tubes were pulled first thing in the morning. Definitely one of my least favorite things. I don’t enjoy being an active participant but with chest tubes, they ask you to breathe in and then bear down. At that point, they yank the tubes out of your body. It is squirty, there are weird noises and I am just not a fan. However, chest tubes are crazy uncomfortable so afterward, I did feel way better.

The rest of the day consisted of more work with occupational and physical therapy. I did my first walk, sit/stands and a bunch of leg exercises with physical therapy. When occupational therapy came I did a 100foot walk. Watch out world, here I come!

On my first walk I made it to the door
100 foot walk

Discussions started about discharge and the possibility of me entering an in-patient rehab program for a few weeks to get additional help from OT and PT. I was moved out of the ICU and back to the main floor. All signs were pointing to an easy road home with my new heart!

Down The Rabbit Hole

Before bed, they upped my tacrolimus and restarted me on AGT (a.k.a Rabbit) again. My husband stayed with me that night and I fell asleep to him reading Harry Potter.

That night I was once again racked with nightmares. These are a little less clear to me, but I do remember at least one of the dreams dealing with a gravely ill young child I was trying to help. Nonetheless, it was a night filled with anxiety and restless sleep.

By that morning my heart rate had shot up to the 140s and my temperature was over 102 degrees. After the AGT infusion had stopped, however, my vitals went back to their normal levels. They ran several tests to rule out other causes but they determined that the fluctuation with my heart rate and temperature were side effects from the infusion.

The biggest news of the day, however, was that I got to have my first shower in almost two months. Sure, I had to sit in a chair, couldn’t wash my own hair because of sternal precautions and was basically bathed by OT but, who cares, it was a shower!

Take Another Little Piece Of My Heart

That day was also the first of thirteen right heart catheterizations and biopsies that I would receive during my first year post-transplant. All of my pressures came back looking good. We would get the results from the biopsy the next day. The day wrapped up with a sonographer coming to my room and doing an echocardiogram to check how well my heart was working.

Did I Mention I Lived - This Mommy's Heart - Pieces of My Heart
Pieces of my heart after the biopsy

The next day, we received fantastic news. The echocardiogram came back showing that my ejection fraction was 68%. An ejection fraction of 55% or higher is considered normal so my heart was working really well. I also got the results back from my first biopsy and I had no rejection! To top it all off, speech upgraded me to a general diet. Yay for food!

Back in my own clothes

There was only one thing left that would make this the best day ever – finally getting to see the little humans I created after being away from them for a week and a half.

The first and last time they wrestled a mask on my toddler.

My sweet, sweet babies a.k.a the germ factories.

132 thoughts on “Did I Mention That I Lived?”

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