New to This Mommy’s Heart? Check out my story from the beginning here – My PPCM Story
After we found out about the donor heart on January 7th, things started moving quickly in preparation for the heart transplant. We had several medical staff members come and talk to us and go over risks/benefits. There were also tons of lab drawn. The CTICU came over and asked me what room I wanted for after transplant. Finally, my husband did a dressing change in preparation for the surgery on the 8th.
On the 8th, we were woken up by my parents and kids coming into the room. They had left extra early to ensure they wouldn’t miss me before I went back for the heart transplant.
Anesthesia came by to explain a few things and asked if we had questions. Next, I had a CT scan of my chest/abdomen. After we returned from the CT, my husband and a VAD coordinator switched me from the Freedom Driver back to the larger C2 machine.
While we were counting down the minutes to my surgery, my family kept busy by packing up my room and moving thing over to the CTICU room. Before the surgery, I was moved down to pre-op. This is where I said goodbye to my family. At 1:45pm, I was rolled back to the operating room to get my new heart.
Or so we thought…
A few hours after I was taken to the operating room, they told my family that the heart transplant was a dry run and the surgery would be rescheduled for the next day. Due to inclement weather, all air traffic had been grounded in the location my heart was coming from so no organs could be procured. My donor was still stable, so they believed there wouldn’t be an issue with having the surgery the next day.
I was later told that the operating room staff fought over who would have to tell me it was a dry run. Ultimately, it was the VAD coordinator. I was still in the operating room when they woke me up. Still hazy from the sedation, I remember opening my eyes and seeing the VAD coordinator. She told me it had been a dry run and all I said was “Ok” and closed my eyes again. She later told me she had to laugh because as soon as I woke up in the OR, I had grabbed my drivelines. Every good TAH patient does…
I felt like crap when they rolled me back to my room. I still had a peripheral IV in my left arm and a brachial A line in my right arm. There was also a giant central line in the right side of my neck that gave me a ton of pain. I had PONV and vomited a few times (the first time during my hospitalization).
Everyone was pretty disappointed the surgery did not happen but tried to remain hopeful that everything would go as planned the next day.
A Line– line placed in the brachial artery that is used to measure blood pressure and is more accurate than taking the blood pressure non-invasively
- Central line – line that goes into a large blood vessel and ends near the center of the body (i.e. the heart)
- PONV – postoperative nausea and vomiting
When Your Heart Stops
I slept well throughout the night but the next morning things became a bit more eventful. While my nurse was helping me to the bathroom around 5
Several people came to the room trying to figure out what the issue was. Eventually the VAD coordinator was called and she told us that I needed to switch machines. The back up machine was turned on and the the nurse went to switch the driveline connection. It went a little like this:
Nurse unplugs me from the old machine and goes to plug me into the new machine. Misses the connection.
Me in my head: Hmm well that’s ok. She’ll get it next time.
Nurse goes to connect me into the new machine again. Misses again.
Me in my head: Uh-oh
So, have you ever wondered what it feels like when your heart stops? Let me personally tell you how it felt.
It was absolutely delightful.
It was black everywhere and I couldn’t see anything. I was laying/floating in this perfect temperature substance. Kind of like water but I wasn’t wet. There was a voice, just like my inner thinking voice, telling me how comfortable I was and encouraging me to go to sleep. And I was like, “yeah, that sounds like a great idea.” Before I fell asleep, however, my inner voice got really loud and was screaming at me, “WAKE UP! YOU ARE NOT SUPPOSED TO BE SLEEPING!”
I’m assuming this is right around the time they finally managed to plug me back in. I woke up and I felt fine but there was one strange thing I learned from this experience. This was not the first time I had felt this.
Let’s go back. Back before I had either of my children. Back even before I was married. Let go back to 2012/2013 when I was flying back and forth between Boston and Indiana to plan our wedding.
On one of those flights, on a near empty plane, I started to feel very sick. My stomach felt very off and, even though I avoid airplane bathrooms like the plague, I decided I didn’t have a choice. The back of the plane was completely empty except for the two flight attendants. As I came up to them, I asked if the bathroom was behind them and they confirmed it was. The next thing I remember…
I remember describing this experience later on to people as “the best dream ever”. It was warm, comfortable and felt so good. I don’t remember if my inner voice invited me to go to sleep but I do distinctively remember it screaming, “YOU AREN’T SUPPOSED TO BE ASLEEP!” Then I woke up in the aisle of the plane. My stomach no longer hurt and I felt fine.
So, what does this mean? I don’t know and I doubt I ever will. This knowledge, however, makes me question a lot. It makes me wonder how long I had actually been sick and if this is just a PPCM story.
Heart Transplant Day
The time for the transplant kept bouncing around throughout the day. First
The night before, my mom had sent a text out to my siblings asking if anyone was able to come out and help with the kids. My sister and sister-in-law ended up flying to Washington. This turned out to be a great decision on my mom’s part. They were extremely helpful with taking care of my kids so my parents could stay with me.
According to my husband, the heart was not removed until around 3-5pm and then it had to fly to Seattle. The heart arrived at UWMC around 6:30
Around 12:45 am, I still wasn’t in my room but my family wasn’t too worried because they had been told how well the surgery had gone. My husband then ran into one of my nurses who told him I would be coming back on ECMO life support.
Below are the text messages from my husband (no responses to the texts are included) that he sent out to family over the course of my surgery.
This is what we call emotional whiplash:
Yeah just called the OR and nurse called me back. Said the heart is in the room and they are starting to sew it in…it’s a go. Hope everything goes as expected.
Heart is in and she is off bypass. Everything is going pretty much as expected it sounds like. They are just trying to stop bleeding and she’s gotten lots of blood products. Estimating about 90 minutes remaining.
Dr. Koomalsingh just talked to us. Very happy and said heart is functioning very well. Right side and everything is doing well so no lung problems. Lots of blood products (FFP, platelets) but only 2-3 units of blood. The biggest concern again was the size, it was borderline too big but it’s a good heart and they didn’t want to pass it up. They took some prophylactic measures to try and make sure there was enough space to accommodate it. Closing the chest now and think it’ll fit but possibility of leaving her chest open for a day or two if needed (for edema to go down). Chest will probably be closed in 30-60 minutes and she’ll be up here like midnight. If everything continues to look good they’ll try extubation tomorrow. We were told this is officially her second birthday…looks to be a success so hope the next days and weeks go smooth and she can be home in a couple weeks
1/10 at 1:01am:
Something went wrong…not sure of anything except they are centrally canulating ECMO. Not good…really unsure. Cardiac interventionalist is checking to see if coronary arteries are blocked in some way or maybe air got into them. Very unusual that heart functioned so well then stopped so praying it’s transient. They may not be able to get TAH back in and would have to have emergency listing. Don’t know more at this time
About 30 minutes they are coming up to update us and settle her in. Her chest is open with a wound vac. Heart still not functioning…ECMO working but necessary to keep her alive. Don’t think TAH is an option now…don’t know what they’ll say but it could be really bad. All efforts are going to go towards recovering this heart’s function if possible
So she was 100% fine and decompensated faster than the surgeons have ever seen. She was 5 minutes from coming up and if she was in the elevator when this happened she would have died. They started CPR immediately and emergently reopened her chest. This was only a few minutes when this happened and so far it looks like all her other organ systems are ok but still early. Her heart shortly recovered but then started to decompensate again so they put her on ECMO. Sometimes this happens when a pocket of air moves out of the muscle and goes into the coronary arteries. That usually happens when the patient is being moved and I guess no one was touching her, so unlikely and even less so when they reviewed her EKG tracings. They did a left heart cath to look for vasospasm and the surgeon thought it would be clamped down hard. It was spasming a bit but not like he would expect but they gave a vasodilator which corrected it. They have never seen this presentation before but he suspects primary graft dysfunction. That occurs in like 10-15% of transplants and in her case is most likely a combination of that vasospasm and acute rejection. There are some untested antibodies but she was a completely negative crossmatch on HLA so also weird it would reject so much acutely. They are giving her a cocktail of drugs and letting her new heart rest on ECMO. If primary graft dysfunction is the case the heart is usually stunned and recovers function on like day 3 and patient off ECMO day 5-ish. He’s optimistic because it’s still in normal sinus rhythm but it didn’t recover as he would expect after giving the vasodilator for the spasm. TAH is not an option. They will talk later this morning and reactive her on the transplant list possibly. He said they received multiple offers on her but were waiting on the right one. If they decide to relist her they will have to lower the bar and pray she gets an offer soon. They really don’t want to keep her on ECMO more than 5-7 days just like before. He seems fairly optimistic it will recover but this is unusual and I don’t know…a miracle needed at this point