Hi, I’m Jen. I’ve lived in Maryland most of my life. I’ve been a pediatric nurse longer than I care to admit. Most of my nursing career has been taking care of children in the cardiac ICU but had to take a step back when my heart failure got to be too much. Now I do telephone triage for a pediatricians office. When I’m not working I enjoy walking my dog Bentley, traveling, reading and now post transplant working out. I was born with triscuspid atresia. So ½ of a heart. I had several Surgeries as a child. Those surgeries help me to reach adulthood however the surgeries that save me eventually cause a lot of damage to my liver. You also can only live with half a heart for so long before it begins to fail. In my mid 30s my heart begin to fail in my liver developed cirrhosis. I was told that I was going to need a heart and a liver transplant. Because of the pandemic things are pushed back significantly. But ultimately I received my new to me heart and liver in August 2021.

I got my call for organs early in the morning. I went to the hospital I was prepped I went into surgery. I came out of surgery and had the breathing tube removed very quickly. However I had a very bad ICU psychosis for several days and do not remember them at all. My mom tells me that I was very confused and didn’t know where I was. During the time in the ICU my liver labs were elevated and they did a biopsy. They determined that I was rejecting my liver. As that was happening I started to come out of the ICU Psychosis. They treated my rejection with steroids. And I left the ICU. They did a heart biopsy right before I was gonna go home and found that I also was rejecting my heart. I had a AMR - donor specific Antibodies – rejection which is the worst rejection that you can have. I had to endure about a week worth of different treatment to get that under control. I was discharged and continued rejection treatment outpatient. All of the treatment to help me overcome the AMR rejection. I started to live life and really enjoyed having two ventricles for the first time and seeing all the amazing things that my body could now do you have that I never was never able to do before. They wind out a lot of my meds. As they wean down the prednisone and my white blood cell count became extremely low. They tried to readjust meds several times however my white count remained low - even for a transplant patient. After a lot of different changes and consultation with the blood doctors in hematology they’re still have an answer by white blood count is so low. At a year out my blood counts are still half of what normal is but I am learning to live my life just very carefully to not get an infection. For me living my life meant going to Hawaii for my one year anniversary being careful meant wearing my mask at all times.

Advice that I would give others is you need to go into the operating room knowing that you were going to come out. You just have to be very determined. I also recommend setting a goal for the one year mark, something to look forward to when times really get rough. For me that was a trip to Hawaii For my one year anniversary. Find whatever feels good to you. My other bit of advice would be To reach out and find community of other people who are going through what you’re going through. Those connections will really help you on the hard days. Family and friends who will be by your side during transplant won’t be able to understand exactly what you’re going through and having folks that really understand where you’re coming from will be a lifesaver. I speak from experience.