Well, the first meetings are done. Both the lung transplant and liver transplant teams want to proceed with the evaluations and move toward listing me. 

I hadn’t quite anticipated the liver transplant, though my doctor here had been telling me it was a distinct possibility for a while. I think I just hadn’t wanted to believe him. They were very clear that even though it’s a more intense surgery, in the long run it decreases the risk of complications post transplant. 

As for lungs, they explained the fine line between trying to get as much use and life out of my current lungs while also making sure I’m healthy enough for surgery. I’m right there in the middle of sick, but not too sick. But the added component of my liver tips the scale toward transplant sooner than later.

This means that I would be on two transplant lists – one for lungs and one for liver. They would do them at the same time, but this way if I got called for one, then the other would become available to me. This has the potential to slightly increase my chances of getting placed sooner.  

It was a lot of information to take in. The list of tests and procedures I have to do prior to being listed feels incredibly daunting even though they are described as “easy” and/or “routine.” Having two teams writing orders and sending me for tests is going to be a challenge. I’m very glad I started working with a Palliative care doctor before I went. I told the teams that they have to cc her on all reports and orders, so hopefully that will ensure that there isn’t overlap and extra hoops I have to jump through. I am grateful that this is not my first medical experience. 

Having my parents and Jamie there was really great and everyone got to ask questions. One thing we learned was that pre transplant while I’m on the list waiting, I merely have to be in the area. But I’m free to do as much or little as my health allows. My mom and dad will come for the surgery and plan to stay with me for post care, which is when all the major care is required. 

Thankfully I have an amazing group of friends and family in the Seattle area and I’m looking forward to being able to spend time with them. I’m hoping I will feel good enough to take advantage of some of the perks of being in the big city, such as art and writing workshops, live music and exploring nature, to name a few. 

Mollie, and my family are still going to be the best people to contact for questions about logistics, medical queries and support needs. 

I will go back to Seattle in a few weeks for phase 2 of the tests and procedures they want done. My understanding is that at that point my doctors will know more concretely that I can proceed and if more tests are necessary before being listed. 

I do have the final say about when I’m personally ready to be on the list. But I know I need to be ready (mentally and physically) as soon as I can. This is very much a “hurry up so I can wait” scenario. 

The hardest part for me is knowing Jamie and I have to be in two different states. Even though most of our friendship before we got married was long distance I am loathe to have to do that again. We rather like our cozy life where we live in the same place.  I’m hoping it will work for him to be able to come down and visit regularly. But we shall see how it all pans out. 

Thank you again for your care and love. Jamie and I cannot do any of this without you. 

Hoping you all have a very cozy and merry Christmas, 
e.