New Lungs, New Life

First things first- I have no idea why there are no spaces in the published blog and they are here in the draft. I apologize for the one paragraph! I will continue to try to fix it but figured you guys would rather read an imperfect blog now than wait for me to figure out the spacing. Well, hello world! It's been awhile and it's been crazy. I'm going to start from the beginning, so this may be a very long post :-) The wait for lungs was 36 days. We got the call on Friday, 22 June at around 2:30pm. I had just had lunch with Jennell and Jeff and I were sitting in the backyard enjoying the weather. Jeff took the call and came outside with a huge smile on his face and asked if I wanted some new lungs. I got very excited and we asked a bunch of questions about what we should do. Jeff took a shower while I gathered a small bag of medication in case we were there longer than expected. I didn't need much because not much outside stuff would be allowed in ICU anyway. We made sure the cats had water and the automatic feeder was set and we drove to the hospital. I was surprisingly calm. Jeff and I talked about letting people know and the possibility of a dry-run (the lungs turn out to be bad). We started calling a few family and texting some of our friends. Jeff would let everyone know once I went into surgery and we knew the lungs would be a "go." Jeff dropped me off so I could go check in and he went to park the car. I checked in and we knew from the phone conversation that I would go into surgery around 8pm. We spent about an hour waiting in the main area and then they took me back to a room. While we were waiting for the room, my transplant coordinator found us and kept telling us "this is a very good set of lungs." She said they turned down 3-4 sets of lungs before this set became available for me. I was getting really excited. Oh, all of the possibilities I am going to have after this transplant! It got crazy busy right before they wheeled me into surgery. Lots of prep work, paperwork, and I didn't even get any alone time with Jeff. We had about a minute for me to say "I love you and I'll see you on the flip side!" They wheeled me in around 8pm and put me on the little skinny operating table. I spent an hour staring at the huge lights above my head (3 gigantic sets of lights) and hearing everyone do their prep work. The surgeon had come to see me right after we got to the hospital to introduce himself and tell us about how he likes to run surgery and pass info along. I immediately liked him- he's a quiet, confident, teddy bear of a man who appeared to love his job. He had a very calming effect on me. I knew the other surgeon was the one I talked to in my initial interview and I liked him a lot as well. My pulmonologist put the mask on my face once we got the word that the lungs were a "go." Laying there for an hour was weird and thoughts raced through my head. When the mask went on, all I could think of was "well, if I die at least I won't know it." Morbid? Maybe... but what else CAN you think of before being fileted like a fish!? The surgery went well! They put in my new lungs and repaired my leaking tricuspid valve on my heart. The surgery took 10 hours and I was on heart/ lung bypass almost the entire time. Then the fun began. My heart decided to bow out of the game and stopped. They shocked it once to get it pumping again. But then my other organs all started shutting down. Liver. Kidneys. No worky. They immediately put me on ECMO, an emergency cardiac/ pulmonary bypass machine. They made about a 4 inch incision on my inner right thigh to access my femoral artery. After about 2 hours they had me stable enough to move out of the ER. I was also put on dialysis since my kidneys decided to stop working. That was a LONG first night. Jeff had several friends stop by, which I know really helped him. His good friend Andy drove down from Camp Pen and had dinner with friends but stopped by the hospital late Friday night. And then stayed all day Saturday and most of Sunday with Jeff. My gratitude for Andy's presence I don't think can ever be repaid, but I am gonna try :-) So Saturday was also interesting. My heart stopped twice and had to be shocked twice. I was hooked up to about 15 different machines all doing different things to keep me alive. I had 2 nurses by my side the entire time, sometimes 8-10 people were working on me at once. My parents came into town about 1pm on Saturday and were plunged right into my crappy situation. I was basically almost dead for 4 days while they tried to get my cardiac function high enough. I finally had an ejection fraction of 40% on 27 June. Thursday was spent sprinting me on the vent (intubation tubes). I guess it was pretty crazy. I was sort of coherent the whole time and would turn my head when I heard my Mom and Dad's voice and I would squeeze Jeff's hand. I was starting to try to communicate and was having a frustrating, difficult time of it. Of course I couldn't talk and I definitely couldn't write so my family was left to interpret my really bad hand signals. It was a tough time for everyone (luckily I didn't know it). Jeff was a bulldog... he would sit in the corner and monitor all those nurses and doctors. He is my hero. He caught two mistakes, but I had such an impressive medical team that it was just Jeff catching small human errors. Let me stop here to talk about my medical team. I don't know if any of you have experienced ICU nurses, but they are some locked on people. Those surgeons and doctors and nurses saved my life. It took them 6 days to get me stabilized. I am so grateful and thankful that words can't even express it. All of the people who worked on me stopped by at some point when I was coherent and talking and all I wanted to do was hug them and squeeze them when they came in the room. It was funny- I was so happy to see them and thank them and they were just so happy to see me getting better every day. I was very emotional about it all once I knew what had happened to me. Jeff took notes every day about the whole ordeal. It was very emotional to read his notes one night when I was definitely on the mend. Like I said, that man is my hero. He never once doubted that I wouldn't pull through. Not once. My liver shut down and he said, "it'll come back." My heart and kidneys shut down and he said, "it'll come back. She'll be fine." I also need to stop and address plasmapheresis. I needed it to help me clot since I was bleeding out of my chest tubes pretty badly. My parents are huge blood donors. They have been donating blood ever since I can remember as a kid. My Dad does plasmapheresis on a regular basis. It requires almost 2 hours of his time to sit there and have his plasma separated from his blood. He has already donated 18 gallons of plasma. My Dad was really proud that maybe his plasmapheresis helped someone else like me, who desperately needed it. I am really proud of my Dad for doing something that few people do in order to help someone else. I am positive that my parent's blood has saved people's lives. I love them even more for it! So they woke me up on Friday, 29 June. Whoa. I felt like I was drowning on the vent. It was horrific. Seriously horrific. The drugs they had me on caused crazy hallucinations. Want to know what I saw when I had my eyes open or closed? Spiders crawling around and dangling from the ceilings, a huge, red carved Chinese wall screen (I liked that hallucination the best- very soothing) that took up my entire field of view. I would stare at the ceiling and someone's foot would come through the ceiling, like it fell off the edge of a bed and then the leg would get pulled back up. I saw fish swimming by, and I can't remember all of the rest. But somehow I wasn't scared by any of it and kne in my mind that it wasn't real. Very weird. So now that I was awake I desperately wanted to communicate. I could write, but it was hysterical to read later. Barely legible chicken scratches. Hand gestures were futile (they must have been bad for Jeff to have no clue how to help me). I felt claustrophobic on that damn vent and people were all trying to touch me. I kept having anxiety attacks and freaking out on everyone by hitting people away from me. Finally one of the nurses talked to me and told me what had happened- my heart had stopped and a team of like 20 people worked to keep me alive for 6 days and I should stop being a diva. Oh, crap. Then I started crying on the vent which is HORRIBLE if you already feel like you are drowning. That night was a very long night. The next morning my nurse came in and said they were going to sprint me again on the cpap machine to get my vent out. He said, "Just breathe on it like a snorkel." DUH!!! That would have been helpful info to know the day before... good grief. Dr. Y came in to my room at about 7:30 that morning. I am going to call everyone by an initial unless I am positive they don't mind being listed in a public blog. And I'm going to publish this post so I don't lose it or something crazy. The saga will continue in post 2 :-)