1 Year Later...

This is a post I've been thinking about for months, slowly piecing together in my brain. As surreal as getting the transplant was, it feels just as strange to be a year removed from it. There have been ups and downs, just like we knew there would, although some have been quite unexpected.

Bryce had 2 episodes of rejection fairly soon after the transplant, one in April and another the end of July beginning of August. Both were caught early, due to his twice-weekly blood work so we didn't have any major complications. They treat rejection with a huge dose of steroids, which carries it's own lovely set of side-effects and problems. But as always, he was a champ and came thru the other side going strong. The rejection in July was a rough one; They do a biopsy to determine what kind of rejection is happening (there are two types of organ rejection: cellular organ rejection and antibody, we think. It's been a while and we try not to think about it too much. Positive thoughts.....) but during the biopsy in July they went too deep into the kidney (sounds fun doesn't it?) so they got too much fatty tissue and weren't able to definitively say. They treated it as cellular rejection and since his body responded to the treatment we assume that's what it was. 

While Bryce was upstairs in his hospital room with a sandbag on his kidney waiting for the bleeding to stop, I was down in the ER facing some health issues of my own. It was hard. And lonely. The next morning the transplant team came in and informed us that they had given the kidney the time it needed to really start to function the way it should and they just didn't think it was ever going to be fully up to snuff. They were going to appeal to UNOS to get our wait time back and get back on the list. We found out we did not appeal in time (it has to be within 90 days of transplant) and so we were starting back at Square One for the transplant list. Oh that was a hard month! Two discouraging medical diagnoses within 12 hours about broke me. Sharing the news with our kids was the hardest, they were devastated. Thankfully, we had each other and our amazing supportive Village to get us through.

His and Hers IV's

 Bryce's last hospital stay was in October for complications after his parathyroid hormone removal surgery. (https://en.wikipedia.org/wiki/Parathyroidectomy)

Luckily, it was only a couple days because it was a busy time with our family life and I was unable to go to SLC to be with him while he was there. Our goal is to make it 6 months without a hospital stay and so far so good. We feel as thankful as ever for access to good medical care, good insurance and doctors who have become like family to us. (One of his nephrologist PA's brought him HOME to Provo after his hospital stay in October because I couldn't get away right when he was discharged! She is a gem, we love Jodi so much.)

Every week for his blood tests his numbers have been borderline: bad enough to keep him on the transplant list, but good enough he hasn't needed dialysis. It's not great, but he has felt pretty good honestly and feels night and day from how his health was a year ago. And if you have to be on the transplant list, this is the way to do it. His PRA (antibody) count is still high enough that he is at the top of the list. Everyday we can go without having to go back to dialyzing is a day we will take! We were so thankful we had it and that it prolonged his life long enough to get a kidney, but also thankful we don't have to do it. May we never have to do it again...

Of course in the fall we got the exciting news that we were expecting. We could not be more thrilled for this baby; She is a miracle in every sense of the word. One I was afraid would never come, despite all the feelings in my heart about her missing from our family. She and this kidney transplant are inextricably tied together in ways that have forever changed us and reminded us in ways big and small that God loves us, hears our prayers and has His own timetable for things. We just need to have the faith to take a step or two into the darkness and then the way will appear. Someday I will share the story of how she got us this kidney, and how this kidney brought us to her. But that is a story for another day.

Bryce had a transplant evaluation with the entire transplant team up at IHC on Wednesday the 20th. 

A few months ago when he met with them, they told him they wanted him to lose some weight before putting him as Status 1 (active) for another transplant. At the appt they measured him and told him that his measurement were acceptable to list him Status 1 and officially put him back on the list. They then explained the exchange/paired program, which we knew about last time but has apparently become more robust and successful lately. It is a system of matching up organs with willing living donors. So one of our potential donors may not match with Bryce, but they match some person in Florida; While the patient in Florida has a living donor that isn't a match for them, but who is a match for Bryce so they essentially swap donors. These can be simple exchanges or they can be elaborate chains. They said they thought his chances were good for Round 3 of a transplant by end of this year.

We were shocked! They seemed confident however, so we are trying to match their enthusiasm while also tempering expectations. 

 

The doctor told Bryce "You are young and healthy. And this will be your 3rd kidney transplant. We want this one to last you 20 years, or longer if possible. We want a good match from a living donor and I think this organ-sharing program is the way to get that." The doctors and coordinators emphasized living donations are generally much more successful and have a longer life.We feel so blessed to have had 2 kidneys given to us, and now possibly a third. It almost feels selfish to want this, but we are trying to remember to be grateful. My sister has this sign in her house, and she got me one for my home for my birthday and I love it so much. I DO remember the days, nights, years we prayed for this kidney. To be done with dialysis. The prayers I prayed for another baby. A girl. A sister for our sweet Janie and a calm for the aching in my heart for the one I felt was missing. I will never forget how good my life is, how my prayers have been answered and I have been given not just what I wanted, but what I needed.

Found this note inside a book my "Fairy Godmother" gave me back in 2006. Sometimes we don't see the same qualities in ourselves others do. Reading that she believed I had risen and faced the world with a smile and resilience made me think I could, even when I thought I couldn't. These words mean even more to me now than they did then.