your life is your life

So it occurred to me that dialysis is actually keeping me alive, that without it I would be dead – like, way dead. And then it occurred to me that I’ve been complaining about this life saving process that really isn’t all that inconvenient. I mean, I sit in a chair and watch shows, mostly. Sure the needle sticks aren’t the greatest, it takes a lot of time, and sometimes I leave feeling a little drained (haha), but really, given the alternative, I’ll take dialysis every (other) day. (Still, a transplant would be just awesome, so I’ll take this (and every) opportunity to encourage you to call Susanna and try your luck on donation! 612-863-8886!)

Last week when Julie broke the latest in a surprisingly long string of bad news, I began, once again, to calibrate my future to the reality of dialysis. I started to think about teaching MITY on dialysis, and taking our family vacation on dialysis. At first this was hard – and in some ways it will remain hard. But after a few days I began to accommodate it. I taught MITY on dialysis last year, the same for our vacation. And this summer PJ and family will be in town! And I realized that I am more excited about that than I am disappointed about remaining on dialysis.

I realized that my life, my beautiful life, continues while I am waiting for a transplant. Days and weeks pass, milestones pass. Part of me has been on hold while I wait, anticipating an easier course after the transplant. First, this is in no way guaranteed, a transplant is not a cure, not a panacea. But more importantly, my life continues to happen while I wait, now even more so.

After I heard that Jackie was no longer a match, I decided to start yoga, something I’ve wanted to do for years. Actually, I decided to order yoga pants. The thing between me and yoga, for 6 or 7 years, YEARS, was not having the right pants. As it has in the past, the health crisis broke through a barrier and this morning I stayed after beginner’s yoga for the advanced class. Rocked it. Next week C and I will spend a few days at the family cabin on Lake Hubert, and I will dialyze in Brainerd. I’ve resisted traveling because of the inconvenience of scheduling dialysis at another clinic, but mostly because I’ve wanted to travel and live unencumbered by dialysis. Now, with dialysis a likely part of my life for months to come, I’m working to embrace it as the life saving measure it is, and live my life. This is my life. This is MY life. It’s lovely, astounding, and I want to LIVE it. Like Bukowski says

your life is your life

don’t let it be clubbed into dank submission.

be on the watch.

there are ways out. there is light somewhere

it may not be much light but

it beats the darkness.

be on the watch.

the gods will offer you chances

know them

take them

you can’t be death but

you can beat death in life, sometimes

and the more often you learn to do it,

the more light there will be.

your life is your life.

know it while you have it.

you are marvelous

the gods wait to delight

in you

Thanks for reading.

Another donation option!

I was chatting with my transplant coordinator, you know, as you do, and I asked her about how “sensitized” I am – which is what they call my antibody resistance. I was asking her because last week I heard some more bad news – another donor, someone who was able to donate in May, was no longer a match. Bummer, right? Bummer.

Julie (my transplant coordinator) told me that my CPRA number is 80, which means that I will respond to about 80% of possible donors. That’s not great. My number in January was 23, which is a much more reasonable number. According to the Organ Procurement and Transplantation Network, at 80, I “might have to wait a very long time until a compatible donor becomes available.” It’s high enough that I get 4 extra points on the kidney allocation algorithm. Yikes.

But there is another way! And it’s not the desensitization procedure covered in the NYT last week (though that seems like it could be an option in the future). The Paired Donation program!  

Being optimistic, and having so many wonderful people volunteering to get checked out, I’ve not given much thought to the paired program, but it’s starting to look like my best (only) option. The good news for all of you potential heroes out there with the wrong blood type, this is your chance! You don’t need to be compatible with me in any way, because your kidney goes to another cool person out there waiting to restart their lives, and their cool friend’s kidney goes to me! And I can enter the paired donation program with lots of people – the more people the better chance of making a match. What’s so cool is you would be donating for two people - sometimes more than two!

So I’m putting another big ask out there – would you be willing to put yourself on the paired donation program? Call Susanna and tell her! 612-863-8886! You’ll have the benefit of a full physical work-up for free! And when you tell people what you’re up to they’ll be totally impressed. And when you’re having a bad day you can think to yourself, at least I’m helping Kevin get a kidney!

Yeah, I know I’m laying it on pretty thick, not very Minnesotan of me. But I confess I’m starting to feel a little impatient with this whole thing, and thought it would be better just to do the big ask. So give it a shot! Have a conversation with someone about it. It’s been a dream of mine that someone might be inspired by this story and donate a kidney to a stranger – I’m not the only cool young person waiting for a transplant. With paired donation, we get both!

And with all things health care, take charge of your testing process – ask to double up appointments. Call Susanna, don’t wait for her to call you. That number again? 612-863-8886. Thanks for reading!