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Yesterday we took the afternoon and found a beach 2 hours away then took the scenic route home which led us through the tulip fields near sunset. It was so amazing feeling great the whole day and knowing we didn’t have to rush home so I could do an hour of breathing treatments before bed. || Due to a change in some of meds I have had way more energy the past week and it has felt so wonderful! I’ve been able to pack and actually get through tasks in a day without pushing through brain fog and heavy eyes. I love getting these breakthroughs that allow me to see what is possible for my future more clearly. #transplantrecovery #doublelungtransplant #livertransplant #cysticfibrosis
I just got these in the mail and was curious if any one of you sent them? If you don’t want to say please know I got them, I love them, and thank you!! ❤️
Update: I get to go back to Alaska while I wait for a new liver! I should be able to be there in June. This the image of just a some of what I’m looking forward. Miss my mountains and birch trees and Marchetti’s cabin on the lake, as well as all the places I have yet to explore. ❤️
Update: so unfortunately they were unable to clear the blocked artery that is causing all the liver issues and so as of today I am officially on the liver transplant list. It’s crazy to me that it’s exactly one week shy of my origin listing date for lungs and liver 3 years ago. I’m glad to have a plan and even though it’s such a disappointment, it’s also peaceful for the most part. | I’m continuing to recover both from this last month of infections and simultaneously from my original transplant. All my emotions that I hadn’t quite felt before are finally catching up with me. So I just randomly cry a lot. Not because I’m scared or mad but more from weariness I think. However, Jamie and I are back together now and we can more easily face the decisions ahead of us. We made it to a beach today and did a little hiking too, which felt good. So onward we go. Thank you for your continued prayers and support especially as This part of the journey isn over yet. Much love,
Hey friends I wanted to update you all on my current health status.
I was going to post a 4 month check in on the 5th but then didn’t and on the 6th I came down with a horrible mysterious headache and fever accompanied by vomiting and generally wanting the world to turn the lights off for a bit. By Sunday I was not better and went into the ER to discover that, 1)no, I do not have Covid-19, 2) but yes, I have infections in my blood and liver. So I spent a couple days in ICU then came down to the liver unit and had a drain placed in my side that went into the area where the infection is. The discomfort/PAIN was excruciating and I spent the next day both not to move and not to take all the heavy pain meds. The pain team was finally called in and they gave me an IV drip with a magic button to push and that helped a ton. Then it was the weekend and they said Monday I could have the drain removed, and then I couldn’t, and then I could, but in 4 weeks. On the bright side I get to go home today and my mother is up to help me out and make sure I eat. I didn’t update in the beginning because it was too exhausting and it still is, but I have a bit more energy now so it’s okay. I’m still pretty drained and not out of the woods yet. I’m realizing that this also means I don’t have the energy for speculating why and how my liver got infected or what my treatment plan is. That stuff is already like being forced to read a chemistry paper and life is way too short for that. So if you’d like to do research on your own and tell your neighbor about it that works perfectly for me. I just personally don’t have the bandwidth to do a lot of check ins or medical centered conversations. I’m on the mend, I have support, and the doctors all know that my lease on my apartment is up on May 15th. That’s all I need to know right now. :)

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