New to This Mommy’s Heart? Check out my story from the beginning here – My PPCM Story
I was admitted to UWMC on Thanksgiving Day. Since we didn’t really know what was going to happen, in addition to needing help with the kids, all of my siblings left their families to fly across the country (IND>SEA) to come to see me and help out. I’ll never be able to thank them enough for their selflessness, love and caring that they gave to my children.
The fellow told my family there was a 33% chance my heart would get better, 33% chance it would stay the same and 33% chance it would get worse. Like I mentioned before, the theme of this story is if something rare and bad could happen, it did.
I was given nitroprusside which reduces the resistance in the blood vessels so the heart doesn’t have to work so hard to push blood around the body and milrinone to help the heart work better and more efficiently. Neither of these was helping very much. I was taken into surgery where the doctors found that the right side of my heart was not working as well as they expected. From here I went straight to extracorporeal membrane oxygenation (ECMO) with an impella assisting the left ventricle. ECMO is a form of life support that pumps and oxygenates the blood outside the body allowing the heart to rest. It is generally not recommended to be on this machine for more than 5 days due to complications.
I was intubated, sedated and placed in the Cardiothoracic Intensive Care Unit (CTICU). You don’t go to the ICU unless you are very sick but my family was told I had the honor of currently being the sickest on the floor…
The entire next day I remained intubated and sedated. My echocardiograms were still showing little right ventricle improvement. On the 25th I was weaned from sedation and my entire family including my children came to see me. I was intubated so I couldn’t talk but I was able to communicate by writing on a piece of paper. I don’t remember too much from this time but remember touching my baby’s head. She has so much hair! This is the day when serious discussions about a left ventricular assist device (LVAD) vs. a total artificial heart (TAH) were had in order to bridge me to heart transplant.
Medical terminology time!
- Pump implanted in the chest to help the heart pump blood.
- Pump implanted to provide circulation and replace heart ventricles.
An LVAD would be the preferred option because unlike the TAH, the LVAD doesn’t replace the heart but rather just helps it do what it is supposed to do. Since it isn’t replacing your heart, there is also the chance that your heart could recover. With the TAH, your only next step is a heart transplant.
On the 26th, I was still communicating quite a bit even with my sedation being quite high which was actually really surprising to the nurses. That day my family received some optimistic news about the right side of my heart and the possibility of just doing an LVAD.
But things are never that easy, are they? Everything started to go downhill on the 27th. I destabilized significantly in the morning and was bleeding all over the place (a common reaction to being on ECMO). Due to the bleeding, I had to get 4 units of blood and 1 unit of platelets. Also, since I had just had a baby, I had terrible vaginal bleeding. They could tell that my anxiety was increasing so I had to be deeply sedated and remain intubated.
Throughout the day there were multiple TTEs and a lot of debate over the LVAD or the TAH but ended up that it would most likely have to be the TAH. Ultimately, however, the way my heart looked after they opened my chest and the transesophageal echocardiogram (TEE) in the operating room would make the final decision.
More medical terminology!
- Using a probe that goes down the throat, this can give clearer pictures of the heart than TTE
My bleeding didn’t stop all night and I required 2 more units of blood. On the 29th there was a lot of concern about the bleeding leading into surgery. It was decided that I would get the TAH. During the surgery, I required several more units of blood and was very oozy. I never knew oozy was a medical term but I ended up hearing it a lot while I was in the hospital. Being oozy is what I would call bleeding but I guess that is somewhat different.
According to the CT surgeons report, the surgery went very well and they were able to close my chest. Their biggest concern was still my bleeding and I remained closely monitored.
My husband’s parents and sister came out that day to support us and help with the kids. That same day he posted about our situation on Facebook. We got an incredible amount of support right from the start with prayers, good vibes and financial donations coming in through the GoFundMe page. It was really special to see all the support we were getting from people all over the world.
I especially needed that support when I woke up to find that I no longer had a heart.
2 thoughts on “Hey Ho, You’re on ECMO”
That had to be hard to handle waking up and finding out u no longer have a heart
Love you Jen! This blog is such a beautiful way to spread awareness and tell your story. ❤️