I'm a storyteller. Writer. Doggie mom. Marketer. Wife. And all around weirdo creative who happens to be a care partner.
My husband Phillip was very unexpectedly diagnosed with End Stage Renal Disease (ESRD) in June of 2014. It took a while to figure out why, but his doctors have concluded that it's related to the same genetic mutation that caused him to be born blind--Leber's Congenital Amaurosis. Apparently, there are a few gene mutations that are also known to cause renal failure, and that particular condition is called Senior Lokken Syndrome. In other words, my awesome husband won the genetic lottery!
In January of 2015, he received a kidney from his amazing cousin, Alicia, and he felt SO good! Even with a few bumps in the road at the beginning, he felt better than he could remember since he was a kid. But within about six months things took a turn for the worst--ended up he had the BK Virus, which is a virus that only kills transplanted kidneys (yay, right?). By the time it was caught, it had exploded in his body. We started treatment right away in the hopes that we could beat it, and for a month or two it looked like we were going to. But then, at the beginning of September, the BK Virus got the best of his new kidney and he lost it. A few months later he had to have the kidney removed because his body was rejecting it and making him incredibly sick (by this point he was already back on dialysis, too).
So now it's back on the waiting list. Except with a fantastic twist (I use the term "fantastic" sarcastically): because of the first transplant and having to receive four blood transfusions due to anemia, he has a ton of antibodies. In fact, his Panel Reactive Antibodies (PRA) are at 100, meaning it's calculated he would reject 100% of donor kidneys. To top it off, he's also O+, so without a living donor finding a match feels like finding a needle in the biggest haystack imaginable.
Like I mentioned previously, my husband was born blind, so I'm his eyes (and his transportation, since driver-less cars aren't quite a thing yet). More importantly, though, I'm his partner. People always seem to think about the physical aspects of being a caregiver, like meals, house cleaning, stuff like that, but the most important part to me is the emotional aspect. We lean on one another when one of us is down or feeling kind of hopeless, we make each other laugh, and we support one another. That's why I use the term "care partner" rather than "caregiver," because we're partners in this crazy ride called kidney disease.
We're relatively young and in our mid-30s, so as you can imagine kidney disease has definitely had an impact on our lives. We try to make dialysis fit into our life rather than making our life fit around dialysis, but I'd be lying if I said we haven't had to make some tough decisions and sacrifices along the way. The biggest one, for me, is the decision to not have children. We'd only been married a couple of years when we found out he was in renal failure, and at the time had figured there was still plenty of time to make the decision regarding having children. Considering his blindness and kidney disease are genetic--and after finding out that I'm a carrier of one of the LCA genes, but that I also have PCOS which messes with fertility anyway--we made the decision to just be doggie parents. Most days, I'm completely okay with that. Some days, though, Facebook posts from friends announcing their pregnancy kind of get to me. *shrug*
We've had to put other things on hold, too. We'd planned on moving out of Austin and out to our land in west Texas by now, but have had to stay in Austin for dialysis (that's the super simple explanation, there are a lot of factors involved there). We want to travel but haven't been able to because what if we get The Call and we're halfway across the country or the world?
I'm lucky to have found a great Facebook support group that's nothing but wives and girlfriends of men with kidney disease. We support each other, laugh and cry with one another, share our hubby's Facebook pages and pleas for donors, pray for one another, and definitely commiserate with one another. There are a couple of groups that are offshoots of that original group that I'm also a member of, and both of them are fantastic.
How do I get through the tough days? Prozac and Wellbutrin. ;-) In all seriousness (okay, so that was serious, too), I try to remember to laugh. I write. I love on our dogs (we have two Great Pyrenees and they're the most sensitive love bugs ever). I crochet. Sometimes I listen to hard rock and heavy metal really loud in the truck and yell along at the top of my lungs. I exercise.
The most frustrating thing is when people say, "I want to help," but then don't follow through on that. They don't ask how they can help, or if they actually offer to help they don't end up doing it. Actually, scratch that, the MOST frustrating thing is the fact that some people seem to want to ignore the fact that my husband is sick and is on life support (because dialysis IS life support--without it he would literally die). Don't treat him like he's sick, don't treat me with pity--treat us like you always treated us--but at least acknowledge the fact that he's sick and that we have a lot on our plates. Share our Facebook posts regarding kidney donation. Don't ignore the elephant in the room. Just simple acknowledgment goes a long way.
The best piece of advice we were given when we first found out he was in renal failure was to try to make dialysis fit into your life rather than making your life fit around dialysis. I say that to anyone who's just starting this journey because it's important to remember. And for other caregivers, remember to take care of yourself, too. You're no good to your loved one if you're also sick or completely beaten down (easier said than done, I know). And laugh. Always remember to laugh.
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Location: Austin, Texas