2015: Goodbye and GOOD RIDDANCE!

Tristan and I were planning to make our “year in review” blog post a second annual tradition today by going through the highlights of 2015. However, when we sat down to start plotting out the post and reflecting on the year, we (somewhat frustratingly) realized we don’t have that many highlights from the year. There are plenty of extreme lowlights, but those are reserved for a salon service, so we might as well leave them out.

Here’s the BIG positive take away from 2015: we are nothing without you all, our friends and family.

The love, generosity, and kindness bestowed upon us this year was profound. For each negative instance we can remember (and there are a LOT of them, trust us), there was some small or large act of kindness by someone we know or by some stranger to bring us back around to the light when the dark felt so seductively alluring.

To go to the dark side for a moment (yes, we saw Star Wars twice already), I want to talk about the surgery getting cancelled. At the time, it felt like the most unbelievable crushing blow that could have happened. After all of the time, work, planning, ups and downs of the medical system, logistical nightmares, etc. etc. etc. etc. … we returned to Monterey without the new kidney and tried to get back to life, living with a continuous feeling of disappointment. I always like to point out that Tristan and I have learned enough lessons along this whole kidney failure journey and we don’t need ANY additional lessons to build our stamina or character. SHIT! This has been hard and we already have ENOUGH character. But, I have to begrudgingly admit that something about the transplant being postponed changed our outlook on this process, which I didn’t think was possible. I think the level of build up and subsequent letdown built a level of respect – dare I say reverence – for the fragility and uncertainty of this process.

The surgery, and any surgery actually, can be canceled at any point. The surgeon could be standing over you with the scalpel in hand, and something could happen that could throw it off. Of course, most surgeries don’t happen this way, but this one did. And why? Because Tristan and Liina’s badass surgeon made a call: Tristan was not healthy or strong enough to be operated on. If I could figure out what makes Dr. Amy Gallo immensely happy, I would do a billion times of whatever that is, because I am pretty sure she saved Tristan’s life right then on November 17 before any cutting could even start, thereby saving the rest of us too. Don’t get me wrong, I am not glad that it happened. I don’t think it was “meant to be”. But it happened… or didn’t. Anyway, the call was made and thank GOD because it wouldn’t have gone well.

Fast forward one month to December 16: Tristan got his lab work back and finds that his blood count had increased above where it had been lingering over the last year. As of last week, Tristan’s blood count level was above where the Doctors were hoping it would simply stay for 2-3 weeks, and it just keeps going up. This means that Tristan will be much stronger and physically ready for this surgery, and the outcome is predicted to be better, too.

The new transplant is scheduled for January 13, 2016, in just two short weeks.

So on the precipice of this new year, we are extremely happy to report and confidently proclaim that 2016 WILL be the year of a new kidney for Tristan. Will it happen on January 13? Maybe. Probably. Who can really say? Not us, that’s for certain.

2016 is also the year we will enter into our 30s and happily leave the tumultuous 20s behind. (And may I just say that the joint 3oth birthday party we are planning to have in Hawaii – open invite! – will be the MOST joyous occasion we’ve ever experienced?!)

What else will come in 2016? We don’t know, but we are SO excited to leave 2015 in the dust. Kick it to the curb, let it live in misery where it belongs, and remain as the hardest year of my life. Please stay the hardest year of my life? Yeah, maybe, but probably not. That’s how it goes… we are young, and there’s a lot more amazing and a lot more bad to grace us in this life. The beauty of it all is that we have no idea.

Onward we go into a new year, taking along the immense gratitude we’ve felt for all of you through this process. Carrying thankfulness for my job that brings me fulfillment and comes with great benefits and some of the most supportive colleagues. Relief because thanks to your generosity, we haven’t struggled financially and can still make a Bay Area relocation round 2 a reality. Pain because the last year hurt and there aren’t bandaids big enough to take away these scars. Excitement because life is short and we’ve spent way too long wrapped up in all of this to really live, and we are SO close to taking our lives back. And maybe most importantly: love. Love for our amazing families, love for our friends – near and far, love for all of the little things that bring us joy each day, love for health and energy, love for the future, and love for each other, which is stronger than we ever thought possible. This is so hard, but we are some of the luckiest people alive to have each other.

And with that, we bid a heartfelt ADIOU, AU REVOIR and ADIOS to 2015. GOODBYE! So long and see ya around 2015.

🙂

With anticipation, excitement, gratitude, and contentedness,

Alisyn & Tristan

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When it rains…. the plumbing goes out

It’s been an intentional span of time since I’ve written. I’ve been at a loss for words, feeling completely overwhelmed by the magnitude of our situation ever since the transplant was postponed. While unexpected, spending time with our family–especially with Liina–has been a beautiful consequence of the delayed transplant. We never expected to get to have over a week of “vacation” together, but we sort of did.

Unfortunately, everything else just feels like one blow after another.

First, the transplant was postponed. You can probably guess how disappointing that was, but it WAS the right decision by Tristan’s medical team. He was too weak to have surgery, and I am appreciative for his team of experts who made the best decision in a really tough situation.

Second, the transplant was postponed. I think that deserves at least two blows.

Third, we lost a lot of money on the house we had rented for the duration of the surgery. We will get some of it back for nights that they were able to re-rent, which is great.

Fourth, our plumbing went out on Thanksgiving. Yes, this seems like a minor issue when compared to the transplant delay, but it was a pretty frustrating situation.

Fifth, our plumbing came and went for the next four days as we welcomed hoards of plumbers into our lives while we had family staying with us.

Sixth, I got really super sick the Sunday after Thanksgiving (it was completely bound to happen… a body can only take so much), and it has persisted. I am still recovering.

Seventh, Tristan made a definitive realization about the limitations of his care team in Monterey. His team of doctors and dialysis people here in Monterey have been challenging to communicate with over the past two years, but we did our best to focus on the helpful moments that have and still do come from them, knowing how close we kept getting to the transplant.

There has been a lot of turn over in his dialysis nurses–he’s worked with four or five different people with different styles and expectations over the 1.5 years on dialysis–he constantly gets conflicting information from his two nephrologists and/or the nurses, and it seems like none of the people communicate with each other about Tristan’s care, so it’s a constant practice of filling in one person about another said. And then they don’t believe you if it doesn’t agree with their point. It’s just the most frustrating communication situation I have ever dealt with. That’s really just the tip of the iceberg.

After the devastating feeling of returning to Monterey, my work, and our life without Tristan’s new kidney, the reality of how difficult they are to work with really sank in this week in Tristan’s first communication with them post-kidney-postponement. Maybe when I am a little more removed from Tristan’s interactions with them this week I can explain better, but for now I will just say that sometimes they cause more harm than good.

After thinking through all available options to us, the only conclusion we have come to is to suck it up and keep moving forward with them, understanding their limitations and asking for as much clarification as possible along the way. Ugh… it’s not fun. The good news is that Tristan and Liina’s team at Stanford are awesome. Don’t ask if we can move all of his care to Stanford, trust me, we have looked into it and it’s not happening right now for many reasons.

So, where does this leave us?

Tristan’s parents have hung around a bit longer to help us out, and it’s been really helpful. I am still sick but back at crazy-busy work now, so having the support each day for Tristan and me is priceless. Everyone around us is being supportive and sending us all kinds of hugs and love and prayers and meditations during this time, which are all a blessing. Tristan’s transplant coordinator at Stanford is still hoping that the transplant could happen in a few weeks or a month, which would be great. My parents bought us a new high efficiency washer and dryer when our washing machine broke! YAAAAY! No, but really, the set is awesome and so amazing to have in this drought. Ummm… we figured out that a draft was coming into our house through the open fireplace, so Tristan’s mom fashioned a high-tech fireplace cover to fix it. And, I think that about covers it. 🙂

We are back on the waiting train, which still feels like a twisty roller coaster instead of a train, but we are doing our best to cope. It’s tough … like, seriously tough, but we will keep pushing on. I am trying to hold onto my faith even though it feels a little shaky these days. Mostly, I am trying to avoid the “how are you doing?” questions, because I really, truly do not have an answer for that right now. Just a silent hug or sending us some well wishes is the best thing anyone can do right now. We hear you, and we appreciate you for it.

Hoping for brighter days ahead,

~Alisyn