Dialysis Remembered

Having moved on from dialysis before, I knew that it was possible to be nostalgic for it. Still, this afternoon, having finished my last run, I was nearly overcome. I don't know, it feels almost like Stockholm Syndrome. To feel so much in a place that can be so impersonal, so transient. It's a few more medical personnel I probably won't see again, but also people who knew me for a year of my life. In October, when I was still optimistic about having surgery in January, I decided that I would have a transplant before I finished watching The West Wing. In December I started pacing myself. In February I stopped entirely and switched to Parks & Rec. I didn't want to finish the show without having a transplant. I was halfway through season 7, which is the final season. I was on the election episode. Today I watched Jimmy Smit's character get elected as the show became nostalgic for the Bartlett administration, and for the show itself. Today was my last dialysis run, at least for a while. I took a few photos, which I will include here. When I run on Monday Wednesday Friday, I'm not the last person on. And because the clinic is closed on Sunday, I'd never seen the tear down that happens Saturday afternoon. I'm going to miss aspects of the place, some of which were fairly unpleasant. I'm going to miss some of the people I ran with, especially because I didn't get to say goodbye - this all happened so fast. It's time for the next chapter. Thanks for reading.

Surgery is a go!

!!!!!!!!!!!!!

June 13th

Hey all, it’s been a while! I’ll start by saying thanks for the thoughts and well wishes. I’ve had, by most counts, a perfectly lovely spring. I took just one course at the U, which I enjoyed thoroughly, and for the first time I didn’t feel like an imposter! It only took 4 years! That wrapped up in early May. My teaching term finished last week unremarkably. The politics at school were tumultuous this last year and the school will look very different next year, but I’ve been keeping my head low and this isn’t the place to discuss that. Dialysis has been similarly unremarkable, which is a nice change from the fall. I’ve been going like clockwork Monday Wednesday Friday since January. I’ve long given up on doing much work. Since the incident in February, I’ve seen dialysis as something to pass through. I’ve watched enough Netflix to do me for some time, though not to the point where I’ve overcome my childhood inability to function when a show is on. While I have committed considerable anxiety to my transplant prospects, I’ve been pretty happy these past few months. I’ve felt good. But it is still with a great deal of relief and excitement that I report that a transplant date is on the (very near) horizon!

First, a quick update on the past few weeks. As of early May, I knew of a few potential donors by way of “mid-run cross matches.” Before February, an initial cross-match was done virtually, by comparing tissue typing on paper. The final cross match, when surgery was scheduled and all the tests complete, was the first time the cross match was done by mixing the bloods. After the positive cross match against Jackie’s kidney, they began doing mid-run cross matches, meaning that four or five times, I got a call from my coordinator asking if I could do a blood draw for this or that potential donor. I know that there have been many more donors who did not make it to this stage – I am forever grateful to you! Thank you! And I know of at least one person who, though not a match for me, is going to donate to a stranger! That’s huge! There are so many awesome people, like myself, waiting for a kidney. Please consider it.

As of mid-May, my brother-in-love Paul Wichser was a match! He had kept me posted on his progress so it wasn’t a complete surprise, but still! He needed to get insurance before we could move forward, and that took some time and bureaucratic wrangling. Finally, he was able to get short term insurance knowing that he would have full coverage in the fall when he starts an a high school engineering teacher! Exciting on so many levels! As of last week, we were talking dates in late June and July.

Then, on Thursday, Paul was told there was another donor who was a better match. At almost the same time, Thursday afternoon, I got a request from my coordinator for a potential donor to contact me. Absolutely. Friday I got a call from a college friend of PJ’s, telling me that he was a match and asked if we could talk dates. We were also talking late June and July, though he asked if June 13^th would be too soon. Tomorrow isn’t too soon for me, and the 13^th was a wild pipe dream, but I said of course, the 13^th would be great. On Monday, he called again to say that, pending the final cross-match, we are scheduled for surgery on June 13^th. 

!!!!!

Now, as you might guess, I’m approaching this with an abundance of caution. I’m not going to fully believe it until they give me that sweet barbiturate push on my way into the OR. Well, actually I pretty much believe it now, and I’ll believe it a lot more on Thursday when we hear about the final cross-match. I’ll post here about those results.

I’m writing this from Pepin. It’s been an absolutely lovely visit for Oscar and I. I’m posting a few photos here, reminiscent of the old days when this was a travel blog. Plus a bonus picture of Miri offering me some pizza at Pizza Luce. Thanks for reading!

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!