I had another follow up at UW with both the liver and lung post transplant teams today. We left the house bright and early and were at UW early enough to get a chest xray and labwork before my official appointments. My PFT was my first appointment and showed improvement in lung function AGAIN. These lungs are just working so beautifully and I couldn't be happier with them or more thankful to my donor and their family for the chance to be able to breathe on my own again.
The lung team is quite impressed with how well I am doing and say to just keep doing what I am doing and keep getting stronger every day. I have tested positive for CMV the last three times they have checked me for infection. This was addressed today and they will check again next week - if the numbers go up and show the infection getting worse we will talk about medications to try to knock the infection out of my body once and for all. So I will keep you posted on that next week!
I don't think we are supposed to have 'favorite' providers. But I do. One of my favorites is Dr. Mark Sturdevant. He has been on my team since day one and I feel a pretty strong bond with him. He is brilliant AND compassionate. There was more than one situation while I was hospitalized where I felt like he was the only one listening to me. He really, really listened and he was so good about explaining things, I didn't even have to ask him. He just wanted me to be educated, which is something that helped me heal and get through some of the tough times.
Dr. Sturdevant is a little bit concerned about how long it is taking for me to be called back for liver transplant. My numbers are stable for the most part and in general I feel pretty darn good. My biggest complaint is the itching. The bile ducts aren't structurally working to drain the bile the way it should. They are too narrow and multiple stent placements have not provided any relief. Since my body is unable to rid itself of toxins the way it should, the toxins hang out and cause all kinds of itching. The itch is not a skin itch, it is a deep down cellular itch. Ointments and typical meds for itching don't even touch it. I appreciate how he acknowledges that although I am 'safe' from a medical standpoint, quality of life is just as important. He sympathizes with me and confirmed that itching 24 hours a day is enough to drive anyone mad and he wants to get going on the next transplant as soon as possible. So today we talked about the possibility of a LIVE DONOR for my next transplant! When I was super sick and it appeared I may die from these diseases I had several people offer to give me part of their liver to keep me alive. At first I was not a candidate for this type of transplant because they wanted both lungs and the liver to come from the same donor, to lessen the chance of organ rejection. But now that I need another transplant anyway, it is possible for me to go with a live donor! UW doesn't actually have a plan for this type of procedure and they have not performed any of these yet (live donor transplant to replace a previously transplanted organ). Dr. Sturdivant worked at a transplant hospital elsewhere, where this was a common practice so he knows how to do them and has plenty of experience. He wanted to try doing these types of transplants at UW but felt he was still a year or two away from that happening, until now. He thinks I would be a perfect candidate and he is moving forward with bringing this practice to UW with me as their trial patient. I trust him wholeheartedly in making this decision and in his ability to safely perform the transplant. So now I just need to find someone with a HUGE HEART and B+ blood type and talk them into donating a little piece of their liver to me. No big deal. :) Eli is actually getting tested in the next few days to find out her blood type and is thrilled a the idea of her momma walking around with a part of her liver in her belly. I have the best people in my life. Say a prayer for me that we can find a healthy living donor and we can move forward to the next step in my journey to healing.
Being next to just about any body of water is so good for my soul. The sound and smell of the beach truly wakes something up inside of me that feels powerful and peaceful all at the same time. Sharing this passion with my kiddos and passing down the importance of water to our people is something that makes my heart feel so good and fills me with joy and pride.
We had an amazing Mother's Day this year! Breakfast was followed by naps (haha) and then we went to town to grab Chinese food for dinner. Went to the garden and then to the river, Eli is learning how to identify plants and trees in the PNW with books but I cheated and used a phone app. Extra special to go to the river, where we went last year but without having to tow oxygen tanks with us. Feeling extra blessed today!
Last pic is from last year on Mother's Day. Thank God every day to be around for another year of celebration with my fam!
Went to UW today with my biggest and bestest cheering squad (momma!). Just a quick check in, labs, chest xray and maybe an update on where we stand with the next transplant. Soaking up the sun while I can! We had prime parking spot on the ferry for the trip home and got some fish and chips to go. A great way to wrap up the day!
I visited Eli at the gardens today and she put us to work! I love visiting her while she is working in the garden. I am so proud of how passionate she is about learning garden managent. The garden is her happy place and I am so thankful she was invited to work in a place that appreciates her, helps her to grow and teaches her about all the things that make her smile. So I will continue to drop in for visits while she is working, even though she might put me to work chopping up potatoes.
I was lucky enough to witness one of the most beautiful unions in the world! Today my cousin (and one of my most favorite people on the planet) Rachel married Tara, the love of her life. The ceremony was just beautiful and touching and maybe I cried, just a little bit. I wish them all the joy in the world as they navigate this crazy life together, side by side. Love you both SO much, thank you for allowing me to be present for such a beautiful thing.
After sleeping until after noon (yikes!) I made myself get outside for a bit, even in the cold. The pups loved having yard time with the fam. Kids are honing their knife throwing skills. Full disclosure, they are way better than I am! I never regret the fresh air.
This evening was the 'Wakening of the Garden'. A great group of people all gathering to appreciate what has been given to us and we pray to the Creator for another bountiful year. I am looking forward to seeing what the lands have to offer this year! And raise my hands to the hard workers that make these things happen!
Tuesday was a good day for some testing and follow up visits at UW. The weather was nice, making the drive much more enjoyable. Still just treading water, at a standstill with my liver transplant. My MELD score is still at 29, (which is quite high). So I still just wait for the call and enjoy life as much as humanly possible.
Once we got home, We jumped right in to cooking with a fun group via Zoom! A delicious salmon with berry salsa to top it off. Added noodles with pesto nettle sauce. So YUM!
Good day for a chilly walk with the pups! I truly enjoy getting outside every day. The fresh air and sun on my skin is incredibly therapeutic. I have recently realized I am presented with the interesting situation of recreating myself. With everything I have been through, I am finding that a lot of things that I really cared about before just aren't that big of a deal anymore. I am finding it easier to do things *I* want to do, look the way *I* want to look and I am just more proud to color outside of the lines. I worry a lot less about what others think about me. I am embracing things that would have bothered me in the past. I was bummed about chopping all of my hair off when I decided this would be easier in the hospital to not have tangled and greasy hair. But now I am embracing the super short cut and love the way my freshly shaved head feels. I was also horrified and grossed out with my septum. Being on high flow oxygen for so long ate away at the cartilage between my nostrils, creating a very large hole that I could easily fit a q-tip through. But rather than continue to be bummed about my new nose feature, I choose to make the best of the situation and found some really pretty hoops. I never would have been brave enough to have a nasal piercing but here I am, loving the look and not caring what others think. I just feel free. :)