(Fresh Out of 8 hr surgery with brand new lungs!!) It has almost been 6 weeks and I feel like this is the right time to share my experience since transplant before details begin to get lost. Prograf brain is a real thing so short term memory isn't the greatest but thankfully my mother and Johnny was taking notes while i was in and out.
Feb 10th 2018- The call came in around 6:00AM- Johnny picked up the call because i was still passed out. Quickly ran the phone to me and that's when i was given details about the organ and the risk behaviors of the donor when they were alive. I accepted and we were told to come to hospital around 11am for various tests and pre-op bloodwork etc. My family and I sat in Pre-op for a few hrs playing cards and waiting for the official word on how the donors lungs look after they were taken out and if they were comfortable doing the transplant.
Around 6:15 PM we got the "lungs look beautiful and were ready to go" I had a second of fear but that's all i had time for.. i was rushed into the OR got to say goodbye to my family and johnny held my hand as they pushed me into OR. After a successful 8 hr surgery, my family was alerted by the surgeon that everything went perfect and I'm being moved to CTICU to start recovery. He explained that the lungs were BIG and they had to shave them down to fit into my body but still healthy beautiful lungs. I later learned that I am now a proud owner of 1 large lung lobe on the right side and 1.5 lobes on the left, instead of the traditional 5 lobes.
At 3:45 my family was able to see me for the first time as i was set up in CTICU. I stayed pretty heavily sedated for a full day Monday while i was still connected to all my wires, tubes and monitors. By the evening they were ready to pull my Vent and allow me to breath on my own. I was responsive a bit but very sedated so Johnny says he was making jokes and i was responding by shaking my head and poking my tongue out like a weirdo. I was still vented but i kept forgetting and trying to talk... never pulled on vent just tried to speak.
Feb 12th around 2:00pm i was very much less sedated and the doctors were ready to pull my vent. After a night of rest, my family made it back to hospital just in time to be there for it. I honestly don't remember much of the removing or the feeling right after but i know that i felt different. I know some people feel that big deep breath right away and its an amazing feeling i'm sure. I personally just felt different and tight like a sausage was packed very tightly. haha. But i got to see all my vitals and numbers look amazing on the monitors for the first time without oxygen in a very long time. It was still a great feeling.
Feb 13th- A day I will never forget. I woke up after slight hiccups in the middle of the night with my very high kidney levels (4.6 creatinine) and tachycardia. Nurse explained that if i couldn't start taking deeper breaths they would have to RE-vent me. Two very nice nurses came in to help me with breathing exercises and shortly after my levels were returning to almost normal (3.0-1.1) Doctors were happy with improvement and trending so they didn't re-vent me. It felt like i was making real progress Tuesday for the first time. And that morning at 8:30AM they even took out my NG tube so i could start eating shortly!! yayyy!
At 9:30 AM we were told that PT was coming to work with me to get me up and moving already. At this point my nurse (who had been explaining that shes a floater from different ICU and shes jet lagged etc all day) decided that it would be better to just hurry and get my central line out before PT so i had less wires to walk with. This is where everything went wrong. I will try to tell this part from my experience and from the documented notes from family. The nurse and PT were there to get my line out.. PT was just waiting for us to walk. As I laidsaid down, the nurse gave no prior instruction and just tilted my head to right and pulled line from left neck. She got some resistance but then just kept pulling. Once the line was pulled (I was holding my breath just because I've had normal lines pulled before and its a habit to just hold breath) is when i felt nauseous and couldn't breathe. I was motioning to my family with my hands around my neck (signaling that i couldn't breathe) I wanted to sit up so they manually sat me up because the nurse couldn't figure out the bed. So i sat forward and my face went white and mouth went blueish.. at this point the nurse seemed a little annoyed with me and kept yelling "you can breathe, just breathe... stop panicking". Now I'm looking at my family and signaling to get someone.. the nurse hesitated and tried to stay calm and was attempting to get my mom to relax and said she'd call a pulmonologist. Johnny explained that as I was trying to breathe my head and neck seized up and I fell back into the bed. I'm still alive at this point but unable to move or talk. My mom started screaming and there was a team of doctors rounding the corner. My dad is yelling "code"... not even knowing what it means (haha).. Johnny's right next to me yelling "Dannie!!, Come back Dannie!!" My vision was in and out and my mom is quickly and frantically explaining to the doctors what happened and then I saw her and johnny being kind of pushed out of the room to a different area to make room for all the doctors so they could save me. I NEVER lost my hearing the whole time but my vision was in and out. It sounds very cliche but I would see the doctors flashlight, trying to get me to respond to the light, then my vision would go black and fuzzy then I could see again and then the fuzzy black circle closed. It was more frustrating at this point because I was technically alive and had a slight pulse left but couldn't communicate as hard as I tried to move/talk and was getting scared that they were just gonna let me go. Then my fuzzy black circle closed in on me and I didn't see anything. I will never forget this mans face for saving me. Finally the room was quiet and my hearing was gone last.. It was terrifying but calm at the same time to hear the silence behind all the noise in the ICU. My heart stopped and I had no pulse/ flatlined for 1.5 minutes.. in that minute in a half I was officially dead. I am thankful everyday now that the doctor had not given up on me. Because they couldn't give me chest compressions 2 days after a double lung transplant without running the risk of cracking my ribs and making things worse...
Meanwhile my mother was in the bathroom throwing up and johnny was in the bathroom thinking he would never see me again and my Dad was outside the bathroom pacing when everyone came out of the bathroom he told my mom and johnny that he heard some nurse saying "they lost her, she's gone" My mom and johnny refused to believe it due to the weird circumstances... the nurse came from a different area and was saying something about she just told the family etc... johnny started investigating and saying it didn't sound like they were talking about me and that nurse wasn't around me at all before and shortly after the ICU doctor came out to talk to my family. It was a miscommunication because they were talking about a different woman.
I needed to be Re-Vented and given compressions through the mask. After those minutes my heart beat returned but I was still not responsive. Doctor explained that they had to rush me to a few tests CT, X-ray, ultrasound and then they can come to see me once I was responsive. But I was ALIVE... despite feeling calm in the darkness, I fought to come back, it wasn't my time yet.... I needed to come back and I did. I am blessed with the opportunity to pay tribute to my donor by using these new lungs and by returning to the people I love who have fought so hard to get me this far in life. The hard work was still coming but for a moment when I woke up (before i realized i was re-vented) I felt a sense of pride... like I made it through the impossible, and like one day I could be running marathons and taking deep breaths in fresh air... i'm not particularly religious but I feel like someone listened to me up there and guided me back because I still had a purpose in this life. I had more left to do and see and much more love to give and receive. I was ALIVE!
PART 2 and PART 3 coming soon...