Omigosh, omigosh, omigosh you guys! I got the best call today! They reviewed my case with the board this morning and I got a call shortly after to let me know I have been officially APPROVED AND LISTED FOR ORGAN TRANSPLANT! I had to focus really hard on all of the things she was saying to me over the phone because I have never been more excited about anything like this in my life! My nurse, Amy, called and was so happy to tell me the great news! She has been cheering me on from the sidelines and we enjoyed the moment together. I only cried a little. But when we hung up the phone I sort of cried like a baby for a bit. Don't worry, they were happy tears!
So now comes probably the most difficult part in pre-transplant life. Waiting for the call. I have to be at UW within three hours of receiving the phone call about surgery. We made arrangements ahead of time with the local ambulance company to get a 'non-emergent' transfer from my home in Sequim to UW in Seattle. Hopefully the organs will all be in good condition and a good fit for me. It seems like everyone I've talked to about having a transplant has gone through what is called a 'Dry Run'. That is what happens when they call you in for surgery, you speed to the hospital, sometimes even go so far as be prepped for surgery - Only to find out the organs won't work after-all so they send you back home to await another phone call.
Every once in awhile people get a green light on the first go and this is what we are really praying for! If that happens, I will go via ambulance to UW and be prepped for surgery. Once the organs have the green light, I am taken to the OR for transplant! Mine is of course far more complicated because I need three organs. The first thing to be replaced will be my liver and they have two entirely separate teams for the surgeries. The liver team does their job and they wait to make sure everything is working as it should. Next the lung team will step in for their part of surgery, to replace both of my lungs. Either of those surgeries is incredibly long but having a two-for-one will make for between 15 and 20 hours of me being in the OR. Once they make sure my lungs are inflating properly, they will close me back up and wheel me to a special ICU recovery room where I am monitored closely. They will keep me intubated for several days after surgery and in fact won't even wake me up from surgery for a couple of days. When they wake me up, I will still be intubated which I am told can be quite uncomfortable and even a little scary. My hands will be tethered to the bed just to keep me from trying to reach up in a panic to remove the tubes. They will ask me a few questions and see if I can follow simple commands. If I am with it enough to follow their commands, they will keep me awake and try to extubate me. If I am not able to follow those commands, they will sedate me again and try again in a day or two. This process can go on for multiple tries but you know me - I want to get it right on the very first try so that is how it is going to go. :) From there I will be taken to another room that is similar to ICU for closely monitored care. If I do well there and can find the strength to do everything they ask of me, I will be moved to a regular hospital room for about another 2 weeks. If all goes as planned, I will move from there into the Transplant House, which is located very close to the hospital. I am required to stay there for three months with at least one caregiver at all times so they can follow me closely and I can be close to UW for any issues we might have. I will have several appointments every week and they provide transportation for those, which is nice! If all goes well I will spend about three months in the Transplant House, recovering and getting strong and learning to live with my new organs and new drug regiments.
I've never been away from home (specifically my kiddos) for extended periods of time so needless to say, this is going to be hard for everyone. But I know with our HUGE support system back at home, things will run smoothly and my kiddos will be well looked after and given all the extra love and support they will need. It seems to be touch and go as far as visitors go at the Transplant House. My mom and Eli will be my main caregivers. Mom will be with me for the majority of the time. If she needs some respite or she gets sick or hurt for any reason, she will head back home and Eli will take over as my caregiver. Ginnie and Rochelle have also gone through all the necessary training to be my caregiver if absolutely needed and I think we will be counting on them for occasional weekends and such, so mom can get some form of her own rest at home. Right now they only allow for one person to be with me at a time while at the Transplant House. That could potentially change, depending on what Covid looks like but I think either way, no matter what, we will be extra cautious and have as very little visitors as possible. I'll be counting on folks to text, email, Facebook and Zoom with me when they can to ease some of the homesickness I am sure to feel. WE GOT THIS, GUYS!