Here we are! Six months post-transplant, and everything is more or less wonderful. I have been wondering what to write about on the blog, but it’s hard to post something when you aren’t: a) needing an outlet, b) needing to share updates with everyone who is worried about you, and c) not operating in the every-day-a-new-crisis mode.
The last six months have been an adjustment. I won’t sugar coat it for you and pretend like the minute Tristan exited the OR, new kidney in tow, life was majestically perfect. When you go from operating at your highest crisis stage to suddenly no crisis at all, it is an adjustment…. apparently.
Tristan felt immediately better after he woke up from the transplant. There was pain, concern for his sister’s well being, of course, and some challenges to resolve, but overall he felt better. We learned that his body was filled with, potentially, 20 pounds of liquid toxins at the time of his transplant. To date, he’s lost about 30 pounds and most of that is just getting back to the weight he was before he got sick again. The other part of that weight loss is due to his increased energy level that drives him to go to the gym and bike 12 miles four times per week! He’s also needed to adjust to eating again. He can eat pretty much whatever he wants and he’s gone from wanting to eat nearly all vegan to craving meat. But he also has a much more limited appetite. Like many things with Tristan, his body reacted to appetite in the opposite of the predicted norm. He was ravenous on dialysis (not the predicted norm) and now has a more limited appetite (predicted to increase significantly). In any case, he is more or less doing great.
His muscles, bones, nerves (not totally sure what portion of which) were damaged during his two years on dialysis, so he has been adjusting to a varying degree of leg/foot pain that fluctuates on any given day. It has felt frustrating, I know, to have this limitation when he is full of energy and feels great otherwise, but I am always impressed with his perspective and how quickly he can bounce back from feeling down on a higher pain day.
I felt immediately better after Tristan woke up, too. And then I felt weird and off for at least two months. Part of that was me adjusting to being back to 100% at work and stressors of a high intensity job, but a large part of that was figuring out where to divert my constantly high energy and emotion in the absence of any urgent, life-or-death situation needing my care. When you live your life ready to jump in the car and head to the ER, go to battle with a health care practitioner who is not getting it, and care for your partner when they are under the maximum amount of duress, your body and mind operate at an intensity level akin to a hummingbird. Suddenly, and almost immediately, I was just not needed in that way anymore. THANK GOD! But also… what now? How do you go back to whatever normal was before after going through something like this? No one talks about that part, or I didn’t hear it anyway. The focus is on survival. And then it’s not.
So yeah, it’s taken six months for me to not freak out at the drop of a hat (mentally, of course. I always kept it cool on the surface, right Tristan?! ;-)). It’s not been an easy adjustment for this type A, high intensity lady, but I’m progressing and I’m still working on it.
I am sitting in the San Jose airport about to depart for a conference in Las Vegas. Tristan flies out tomorrow night to join me, and I think this little weekend away will be spent in reflection. I hate the phrase “losing years” because I don’t think we’ve lost years of our lives as we went through the past bit, but it’s certainly time that was dedicated to a different cause than most 28 year olds. Now that we are on the cusp of 30, I can say with confidence that the light is back and shining bright. Now it’s up to us to figure out the usual things people figure out at this point.
The last 6 months have been dedicated to adjustment. The next 6 can be for learning how to adore and embrace life fully again. Will it be possible to live without the underlying worry? Maybe, maybe not, but we have to move forward. Always forward.
Happy 6 months of healthy kidney function to Tristan, to the amazing and generous Liina, and to all of us who continue to be touched by this journey.
With love and gratitude,