May 1, 2025 Update

Hello, all. For the foreseeable future, I will no longer be doing monthly updates - I will just wait until I have some news to share. Due to health issues, I haven't been writing much these past two years. In the last month, I started seeing a new neurologist and have a new treatment plan, which seems to be giving me some relief. Let's hope I continue to see improvement. 

I am trying to get back in the habit of writing every day, which is has been proving harder than I expected. Fortunately, I am very stubborn. I have started on a new fantasy novel. I have been sending work out to magazines again and have a few publications lined up, as well as a spot on a podcast that will be recorded in June. 

Thank you, as always, to all my lovely, supportive readers and to all the kind folks who have sent donations to help me cover my medical bills and some living expenses. It is deeply appreciated. 

PUBLICATION

My poem, “And Pain and I Resume,” is in the inaugural issue of Life in Limbo. Thank you to editor Victoria Desmond for including my work.

Happy Mayday to all!

November News

I don't actually have any news this month. If you didn't see my blog post earlier this month, I have been having major health problems. My husband took me to the emergency room the day after the election. The rest of the month has been kind of a blur. I had to go back to the emergency room the week before Thanksgiving and was admitted. I am not actually well, just stable. They sent me home with eleven prescriptions and a whole slew of follow-up appointments over the next few months. This month -- hell, the whole past year -- has been a perfect storm of suck. I'm exhausted and in a lot of pain, but I am hoping to get back into writing and submitting work again. Progress so far has been slow. 

I am no longer able to work, so I must humbly ask that you consider donating to help me out, especially with the medical expenses. I don't even want to think about what the initial emergency room visit plus a week's inpatient stay is going to run us. 

Aside from releasing Part 3 of the In the King's Power series, my only other major news is to say that I'm happy to see Bluesky booming. I moved to the platform back when Musk first bought Twitter, but it wasn't very active. You can find me @laurenscharhag.bsky.social -- I'd be thrilled to connect. 

My only other bit of news is to say that Part 4 of In the King's Power will go live on Sunday. An excerpt is available here. 

I was actually released from the hospital on Thanksgiving, so Patrick and I hit Whataburger then went home and watched Planes, Trains and Automobiles, as one does. For those who celebrate, I hope your Turkey Day was an excellent kickoff to the holiday season. I will post an excerpt from Part 5 of the series around mid-December. I am especially excited to share it since it's my favorite part of the series-- a lot of cool stuff happens. I am grateful for all my friends and readers-- truly, you, Patrick, and writing are what will pull me through this. Thank you. 

It's going to be a long damn apocalypse.

Guys, I keep meaning to update everybody, and I’ve kept putting it off, so now I don’t even know where to start. I’ve been struggling with my own thoughts and reactions to everything. It’s a lot, so if you don’t want to read it all, I get it. Then we elected an orange Nazi­ to the White House and empowered his merry band of psychos, so there’s that.

 
TLDR: I am so fucked. We are all so fucked, so I feel bad about mentioning my situation specifically, but I can’t afford to be proud. If you could possibly bring yourself to donate a few bucks to help keep my bills and especially my medical bills paid, I would be much obliged. I have added a donate tab to this blog and a link on LinkTree.

 
But before I get to my (literal) bellyaching, let me say this about the political situation-- I know. I get it. I am as outraged and horrified and disgusted as the rest of you. But our despair is what they want. Broken spirits and broken wills are the goal. Broken people are easier to dominate. They don't fight back. We have to fight back. We have to continue to care for ourselves and each other, now more than ever. We define ourselves and our communities. Find your community. Build it, if you have to. Make it a sanctuary for yourself and for those who need it. American individualism is yet another thing that keeps us divided, cut off from each other, as if humans are not social animals. But we are, and if we lean into that, we could help each other thrive.

 
Racism and xenophobia are also the order of the day, even though America’s strength has always been its immigrants. My great-great-grandmother survived poverty, war, plague, immigration, and racism. She lost seven children and her husband to a typhus outbreak on the eve of the Mexican Revolution. She packed up the remaining family members and came all the way here, to the Midwest, from Michoacan. I have no idea how she made that trek, but she did.

 
They thrived. So can I. So can we.

 
We have to stay kind and compassionate - and no, I’m not saying be kind to bigoted pieces of shit. I have seen that paradox of tolerance post on about a hundred social media accounts, so you all know what I mean by that. I’m not saying that we should be naive, or doormats. I’m saying care for your community. We need each other. They can't take my kindness away. They can't stop me from caring about my fellow humans. That might mean fighting to defend the vulnerable. In our society, selflessness is a radical act. Selflessness, joy, optimism, compassion, empathy-- all radical. Be radical.

I may not have much, but what I have, I will share with those who need it.

 
I don't have any physical strength, but I will fight for those who cannot fight for themselves.

 
Don't let them take your joy away. Find it wherever you can. Share it. We only get one shot at this life.  Don’t spend it despairing.

As someone with multiple, severe, disabling conditions, let me tell you – I have to triage every day. On a good day, my time and energy are EXTREMELY limited. I have to choose wisely where I expend that time and energy. I advise everyone to do the same now. We don’t have time to fuck around.

 
Now. On to my personal problems. Sorry.

CW: suicidal thoughts and unpleasant medical oversharing. No medical advice, please and thank you. Whatever you’ve got, I guarantee, I’ve heard of it. If I haven’t already tried it, there’s a good reason.

 
Last Wednesday, Patrick had to take me to the emergency room. I’ve had some pretty apocalyptic migraines over the course of my life. More than once, I have lain in a dark room and wondered if I was dying, having a stroke, having a seizure, or some combination thereof. The one I had last Wednesday definitely made my Top 10. It felt like someone had rammed a railroad spike in my left eye, and another one through the top left quadrant of my skull. I wanted to die. I wanted to bang my head against the wall. Emergency room doctors have given me morphine before, and that’s what I was hoping for-- if I can’t be dead, unconsciousness is the next best thing. But I also started throwing up. I’ve had migraines make me throw up before, but that’s not the norm for me. And I just kept throwing up. Uncontrollably. On the way to the hospital, Patrick had to stop several times so I could jump out and puke, and I still puked in the car. And on myself. Nothing like showing up at the ER with chunks on your shirt, eh?

 
The emergency room was packed. We ended up having to wait 2.5 hours to be seen. Emergency rooms are bright and loud. I had a plastic barf bag and sat there yakking in front of 50 or so people. I snapped at the teenager sitting next to me for drumming his feet on the floor. The doc ordered a CT scan of my abdomen and it turns out I have acute colitis, which often presents with a headache.

 
I have never been healthy. I am what the medical establishment calls a “complex” patient. I’ve always had multiple, major chronic health issues. I have weird allergies. I don’t tolerate most pharmaceuticals well– if there’s some god-awful side effect, I will probably have it. When the ER doctor asked me what conditions I have, I was like, “Uh, it would actually be shorter to tell you what ISN’T a problem. My heart. I think my heart is pretty much the only thing that functions properly. And maybe my bones. As far as I know, my bones are sound.”

 
Over the past four years, the health situation has become really untenable. My migraines have become almost constant. Last month, I had 24 migraine days. I experience vestibular attacks, which give me intense vertigo and nausea. It’s started to affect my balance, so now sometimes, I need a cane. It’s causing severe motion sickness so that I can barely ride in a car, let alone drive. I have started experiencing Alice in Wonderland Syndrome, which causes size and spatial distortion, so I have almost fallen down the steps a few times, among other challenges. The migraines cause hallucinations, mood swings, insomnia.

 
Two years ago, I was diagnosed with gastroparesis, which means my body does not digest food properly. It causes vomiting attacks, as well as early satiety and acid reflux. It is also associated with dysautonomia, which I also seem to have. In my case, my body can’t regulate temperature, so I frequently get intense hot flashes that make me red-faced and sweaty. I can’t wear sweaters or long sleeves anymore. I can’t use makeup because it just becomes a mudslide. Any little exertion makes me absolutely gross. Summer is torture.

 
I take an antidepressant that causes insomnia. I use medical marijuana for nausea and motion sickness, but it has killed my short-term memory. I often forget what I was saying mid-sentence.

 
When I was younger, I was able to shake off migraines to a degree. Now, they put me out of commission for at least three days. Between them and the stomach issues, I never get a chance to recover. At best, I am only ever operating at 50%.

 
Last February, my doctor put me on a new medication. It gave me hives for four days. I am allergic to Benadryl, so there wasn’t much to be done about it. I had never had hives for multiple days. I had them from my scalp down to the soles of my feet. The itching was so terrible, I wanted to throw myself off a building. I scratched myself bloody.

 
The only thing that has allowed me to keep a job these past six years was being able to work from home, and even then, I was struggling. Last July, I was knocked down to part-time. Not because I’m sick all the time, but because we got new management and underwent massive restructuring. I was relieved, but worried– would we be able to afford my salary being cut in half? I applied for dozens of jobs, went on five or six interviews, and didn’t get hired anywhere. But I was so freaked out– if someone DID hire me, everything has gone back to in-office. How would I get there every day? Would I be able to make it through any probationary periods without getting fired for absenteeism?

 
So. Can’t drive. Can’t travel. I’m pretty much a shut-in. I never go anywhere or do anything. It’s impossible to make plans because I never know how I’m going to be feeling from day to day. My diet is highly restricted. I often can’t sleep. I have poor concentration and retention. My job situation had become very precarious. You probably will not be surprised to hear that I became very depressed, despite the meds. I very seriously considered suicide because I am quite literally worth more dead than alive. I am tired of being in pain. I am tired of watching my life, which was already so limited, get smaller and narrower with each passing year. I researched methods. The only reason I didn’t go through with it was because, with my luck, something would go wrong and I would just end up a vegetable or something, and that’s the only thing worse than my current situation.

 
Once the restructuring at my job was complete, I had a new supervisor, and was assigned to a grant project. It was going to be a lot more work and a lot of pressure with no extra pay– basically, they wanted management-level work for secretarial pay. The new management was pushing for everyone to return to the office.

 
No thank you.

 
So I quit. I don’t have many good days anymore, and I don’t want to spend them in a job that I don’t especially like, and one that criminally underpays me. And here I am. Unemployed and unemployable. Still sick, exhausted, and on antibiotics, Zofran and weed. Colitis can last anywhere from a few days to four weeks, depending on the severity of the infection.

 
Trump is in office. I don’t even know what to say. Life just keeps kicking me in the nards and I’m not sure I can keep getting up. I quit my job just over a month ago, and I still haven’t fully processed and decompressed.

 
This is only scratching the surface of the suck. I have a whole catalog of other health issues. My laptop died last week. I just found out my primary care doctor quit the practice, so now I have to either track her down wherever she went, or find a new doctor. Our entire plumbing system had to be replaced last summer, which means a hefty loan payment every month, on top of my student loans and our grossly inflated mortgage. I can barely perform day-to-day tasks like cooking, cleaning or even showering regularly. We’ve had a housekeeper and a lawn service, but now that I can’t work, that’s over. My parents came over the other day to tidy up and do some laundry and it’s so, so demoralizing to be a grown-ass adult who needs Mommy to come over and change my sheets.

 
I know it seems like I’m a prolific writer, but pretty much everything you’ve seen get published over the past two years was written before 2022. I have only written a handful of poems since then and very little else.

 
I’m sorry to be such a downer, but I needed to get this off my chest. I will be applying for disability, but if you know anything about disability in the US, then you know people pretty much get rejected on the first try. It can take years to get approved, if at all.

 
Today was the first day I have felt a bit better. Since the election, I have frantically been collecting every happy/comforting TV show and film I can think of and mainlining them like a Community and Ted Lasso-lovin’ methhead. I’ve been listening and singing along to music. Art has always been my salvation. It will always be my salvation, my life jacket. I will make and consume art until I drop dead.

 
Find your salvation. Find your life jacket and strap it on. It’s going to be a long damn apocalypse.

­

November News

To all who celebrate, I hope you had a wonderful Thanksgiving. I don't have a lot of news to share for November. 

I was one of the featured readers on SpoFest on November 14, along with Hayley Mitchell Haugen and Madeline Artenburg. If you are unable to attend, the event was recorded. Many thanks to hosts James Bryant and Rick Christiansen. 

I haven't done a lot of writing this past year-- only a handful of poems, really, and I only have one or two publications tentatively lined up. I still have a lot of health issues I'm contending with. But I am currently reading submissions for Gleam, and in the next few weeks, I will be reading for the Jack Grapes Poetry Prize. So, in my own small way, I am still contributing to the literary community.

Thank you, as always, to my supportive readers. Prayers, good vibes, healing thoughts, positivity-- whatever you've got, please send 'em my way. As we head into December, I hope you all have a wonderful holiday season ahead of you.

New Release: Points of Light

I am pleased to share that Points of Light: Poems to Express Gratitude for Nurses During the COVID-19 Pandemic, is now available to purchase from Amazon.

Proceeds from this book will benefit the KU School of Nursing, whose mission is to educate nursing students for diverse and changing roles in dynamic careers as researchers, leaders, and educators. 


SYNOPSIS
In September 2021, when the Delta variant was surging, the KU School of Nursing staff decided we wanted to do something for the nurses at the University of Kansas Health System to thank them for their essential service. We were and are sincerely grateful to them for all they do to preserve life and wellness. To express our appreciation, we put out a call on social media, asking poets to contribute poems or messages. The post was up only a few days, yet we received work from 37 contributors across the US, as well as work from 12 other countries.

We shared these poems with our health system nursing colleagues, and now, we would like to share them with nurses everywhere, as well as the world at large. Not only do they express our shared respect for the nursing profession, they capture an historical event, the repercussions of which will continue to be felt for years to come.


ADVANCE PRAISE
“Poetry is so much more than a form of expression. Nursing is so much more than a series of well-organized tasks, embedded in a plan of care. These poets from around the world and across the span of emotion, give clarity and gratitude to those who provide the art and science of the profession of nursing. This publication is a treasure.”

-Barbara Gill MacArthur, RN, MN, FAAN
Volunteer Faculty, University of Kansas School of Nursing

“This collection of prose and poems is a tremendous reminder of why nurses do what we do. Our work is never for naught but for anyone who needs us.”

-Kevin Floyd, RN, BSN, CCRN
Travel Covid Nurse 2020-2023
Critical Care Float Pool Nurse
Oregon Health and Science University
Portland, OR


“This series of thoughtful and heartfelt poems reinforces the profound impact nurses have on caring for people. Two of the most important ‘acts of medical care’ are touch and the human interaction of a nurse. Those transcend borders and cultures.”

-Fred Neis, MS, RN, CEN, FACHE, FAEN
Vice President, Lumeris Inc.
2023 President, KU School of Nursing Alumni Board


SAMPLE POEMS

The Distant Constellation of Beauty

Like motherhood, nursing means long hours, thankless work, an outpouring of self
in the interest of others,
often with no apparent end in sight.
But be sure you understand this clearly:
your work and the love you do it with
is appreciated and necessary,
now more than ever,
and you are all points of light
in our dark times.

-Jim Landwehr


To all those strong enough to lift us
from our beds and help us walk,
but gentle enough to bathe and soothe,

strong enough to lift us
from our pain and into wellness,
but gentle enough to handle
the frailest of old bones and
the tiniest of micro preemies;

strong enough to carry on
in the face of terrible odds,
but gentle enough to cry with us,
not allowing us to shoulder
even that burden alone.

We have all known you.
We have all been touched by you.
We have all followed your light
out of the valley of the shadow.

Now we stand by you
as you have stood by us.
I carry no lamp, only this poem.
I hope it’s enough to help you
keep to the path.

-Lauren Scharhag

Celebrating Health in the Time of COVID

Yesterday, we celebrated Kidney Day. Eight years ago, Patrick received a transplant from a wonderful, selfless family who’d lost their daughter. We named the kidney Sidney, and Sid’s still going strong. It’s an odd year to be celebrating a health milestone. Even when it’s not 2020, health is something that we are always cognizant of, that we never take for granted. We survived three years of dialysis and all that went with it—disability, blood transfusions, shingles, hernias, pain, countless nights at the hospital, innumerable medications (some more helpful than others), bankruptcy, and foreclosure. (We did home dialysis, and just to give you an idea, home dialysis cost around $12,000 a month, and the dialysis machine was $65,000.) Recovery from the transplant took another year. So it’s hard to see people being so flippant about their own health and the health of others; it’s hard to see leaders who are more concerned about shareholders than they are about the health of non-millionaires.

This is something we are never not worried about. Antirejection medications are not a joke. They have to be taken on time, every time. They suppress the immune system which makes Patrick more vulnerable to contagions. Also, a transplant is not a cure—it’s only a treatment. Sidney could eventually give out. Medical advances have opened up more options, so we hope he never has to do dialysis again. I really, really hope we never have to worry about a ventilator for COVID.

So it was a quiet celebration at home, with take-out, chocolates, and binge-watching Killing Eve. We take a moment to reflect on the young woman whose passing has given us our own lives back, as well as improved the lives of at least fifty people. We reflect on her family, total strangers, who we can never repay. We appreciate everyone who is doing their part to protect each other. Thank you.

The day after transplant surgery, June 2012

Better Living Through Chemistry?

I’d been meaning to write a blog post about some of our recent adventures with prescription drugs. This week's kerfuffle with Turing Pharmaceuticals has prompted me to finally write it.

In case you aren’t aware, Turing Pharmaceuticals, a privately held biotech company, acquired the drug Daraprim from Impax Laboratories. The drug has been on the market for over sixty years. It’s used chiefly to treat malaria and toxoplasmosis. The latter is a problem for AIDs patients and others with compromised immune systems. Turing hiked the price of this life-saving drug from $13.50 a tablet to $750.00.

Outcry ensued, and rightly so.

Unfortunately, this is not an isolated incident.

Unfortunately, this is just another aspect of our broken healthcare system, of which Big Pharma is only a component.

I hate that it takes a case like this to get the situation the attention it deserves—though the cynical side of me wonders if even this would have received this kind of attention if it wasn’t campaign time. An even more cynical side of me looks at Turing’s almost cartoonishly eeeeevil CEO Martin Shkreli and wonders if the whole thing’s not a damn campaign stunt—notice how quickly Hillary Clinton charged in there like a white knight, saying she was going to find a way to end price gouging? In a matter of hours, Turing changed its tune and Shkreli has slinked off, locking down his Twitter account and presumably disappearing back into whatever muck that spawned him. Feels a little too pat, doesn’t it?

Not to be confused with Mr. Shkreli.

But I digress.

I want to say again how Big Pharma is not the only problem here. That our healthcare system is broken.

Did you hear that?

Big Pharma = only part of the problem.

The system = BROKEN.  

I say this as someone who lost their house and had to declare bankruptcy due to catastrophic illness.

I say this as someone who requires medication to stay functional. (Well, as functional as I get, anyway).

I say this as someone whose husband literally requires pharmaceuticals to live. He’s a transplant patient, which means he’s on immunosuppressants, which means toxoplasmosis is a real concern for us.

In the first year my husband experienced total renal failure, I had to take him to the emergency room at least a dozen times. (Honestly, I lost count after the eighth). Going into it, we had better circumstances than most-- we were DINKs with reasonably good health insurance. Even then, each ER visit carried a co-pay of $100. That was $1,200, right out of pocket.

Initially, one of the complications caused by renal failure was blood loss. Uremia, the build-up of toxins in the body, caused microbleeds along his digestive tract. The blood was passing through his stool and his body was unable to produce red blood cells fast enough to replace it. He required three transfusions, and then for about eight weeks after, he had to take an injection called Epogen to stimulate red blood cell production. Each Epogen shot was $700. The shots were weekly.

The insurance company refused to pay for them unless he was a) hospitalized, or b) his blood cell count had fallen to dangerous levels. If you’ve never seen someone with a low blood cell count, they’re paper-white and tend to pass out a lot, so there’s always a risk of falling and the trauma associated with falling.

Also, if you don’t have enough blood, you can-- y’know. Die.

So. Epogen shots for eight weeks: $5,600 price tag.

This is in addition to the $46,000 hospital I received for his first month-long hospital stay, and $60,000 for the second. 

This is in addition to the many drugs the doctors put him on, then took him off of, many of which carried hundreds of dollars in co-pays.

Then he went on dialysis. The dialysis machine was a $65,000 piece of equipment. The monthly supplies for his treatment were $12,000. Tubing, clamps, dialysate, needles, sanitizer, bandages, and I’m sure there’s other stuff I’m forgetting.  

This is in addition to the high monthly premiums we paid for health insurance in the first place, which failed us when we needed it most. A large portion of our healthcare bills were ultimately picked up by the American Kidney Foundation.

This is a capitalist society, which various politicians are always insisting we try to keep as laissez-faire as possible. The point of laissez-faire capitalism is to let the market sort itself out: inferior goods/services fail. Superior goods/services rise to the top.

So how is it possible that these companies exist, charging such outrageous prices for such shitty service? Services so shitty, in fact, that they require a nonprofit to step in to help mitigate their shittiness?

By the way-- wanna know the approximate cost for the first year of renal failure/dialysis?

Around $274,000.

That’s a conservative estimate because I don’t recall how much we paid for additional co-pays like all the specialists (nephrologist, cardiologist, gastroenterologist) and incidentals like x-rays, CT scans, colonoscopies, lab tests, etc., ad nauseum, forever and ever, amen. Also? We did home dialysis, which is cheaper than going to a clinic.

The year before, Patrick and I had made $44,000. (Slightly below our state’s median income-- and that was a good year.)

One year of healthcare = six years of income for two people.

It’s untenable.

Now that Patrick has a transplant, it doesn’t end. The new wrinkle with medication and insurance is mail order services. Earlier this year, we were informed that we could no longer use the pharmacy that we’ve been using for eight years, with pharmacists who’ve been with us every step of the way of our nightmarish medical journey. Our pharmacist knows our names and we know his. He knows our health conditions. He and his staff have done so much for us over the years—advising us on OTC medications, catching drug interactions the doctors don’t, calling us to let us know when there are manufacturer’s coupons available, and helping us navigate the maze of Medicare.

We can’t use them anymore. Our insurance company now refuses to pay for medications we take on an on-going basis from any pharmacy except their mail-order company. They tell us it’s supposed to be for our convenience, that we will save money.

So far, it has not been convenient, nor have we saved any money.

Not only do we pay more than we were paying at our old brick-and-mortar pharmacy, many of Patrick’s drugs can’t be put on auto-refill because the price fluctuates too much.

Twice, the mail-order company has failed to ship Patrick’s anti-rejection medication—the medication that we absolutely cannot fuck around with. If he does not have his medication twice a day, every day, on time, his body can begin the rejection process. Like Daraprim, this is a life-sustaining drug.

When it didn’t arrive on time, what did we do? We had to go back to our old pharmacist to get a partial fill while we waited for the mail order company to get its ass in gear.

One of Patrick’s other drugs, a phosphorus supplement, is so expensive through the mail order program, it’s actually cheaper for us to pay for it out of pocket at—you guessed it. Our old pharmacy.

On a much more minor note, the only migraine drug I’ve ever found that works on my headaches is Zomig. My doctor prescribes six pills a month, which is the maximum most insurance companies are willing to cover. My insurance only covers four.

Don’t you love that the insurance companies know better than my doctor what’s good for me? Or that they aren’t about to allow what’s good for me to get in the way of their bottom line?

The circle of blame doesn’t end there. Yes, the insurance companies and the pharmaceutical companies are neck-and-neck in the relay race of eeeeevil. They charge enormous sums for their goods and services. But the doctors and hospitals charge enormous sums as well.

Then there’s the role of our employers. Companies, like consumers, are saddled with an immense burden when it comes to healthcare costs. For some companies, presumably, this is more of a hardship than others. (Just how much responsibility should they bear?) Over the course of my time in the workplace, the premiums keep going up while the benefits keep dwindling. The employers’ options are to either pass the cost onto their workers, or to cut benefits, or both.

In the case of having to use a mail order system—we found, upon further investigation, that that’s not the insurance company’s requirement, but the employer’s. They’re trying to save costs for their bottom line.

So who’s benefiting from all the savings?

Not us.

It’s an old joke to say that if you’ve got your health, you’ve got everything. But it’s really difficult to convey how true that is to people who’ve never been sick.

The healthcare industry has a unique and uniquely awesome responsibility to their consumer base. Their business is not just a business of dollars and cents. It’s a business of blood and organs, of spirit, of ensuring families get to keep their loved ones for as long as possible. It’s about life and quality of life.

But again, I don’t expect people who’ve never suffered a major illness, or watched a loved one suffer a major illness, to really get that.

So let me put this in terms you dollars-and-cents people can grasp: keep workers healthy. Healthy workers = healthy economy.

Because he who dies with the most stuff wins. And just count yourself lucky if you get to die with all your original parts.

“Why do you wear that stupid hat?” and other questions for a transplant patient

This summer, my husband and I celebrated his second kidney day.  He received his kidney transplant in June 2012.  It’s definitely something worth celebrating-- two years of health and an exponentially improved quality of life.  We owe this to a good family who was able to think of others in their time of grief.

In that time, we have discovered that most people seem to think getting an organ transplant means the end of all medical-related woes—they seem surprised that Patrick even has to take medication.  People that didn’t know him before he got his transplant are shocked to hear that anything was ever wrong with him. 

A few weeks ago, at Patrick’s job, this conversation happened:

Coworker 1: Hey, Patrick, why do you wear that stupid hat?

Coworker 2: Oh, dude.  Don’t ask him that.  The answer’s going to make you feel like a fucking asshole.

Coworker 1: No, seriously, bro.  What’s with the hat?

Coworker 2:  Fine.  You’re a fucking asshole.

The reason for the stupid hat is that transplant patients are at risk for skin cancer due to immunosuppressant drugs.  Depending on the type of cancer, transplant patients have up to a 100-fold higher risk for developing skin cancer compared to the general population.  Patrick has been encouraged to see a dermatologist at least once a year.  When he goes out, he has also been advised to wear sunscreen. 

Mostly, Patrick just tries to stay out of the sun altogether, which is tough for him.  He’s always been a sun-worshipper.  He loves swimming and hiking and all that outdoor shit.  Me, I’ve always been white—I don’t quite combust when light touches me.  I’m more like a deep-sea creature.  If you try to get me in the sun, I’ll probably just squirt ink at you and retreat to my shadowy depths.  That’s a writer joke.  Geddit?

I squirt my ink all over you.

So I can’t really appreciate what he’s going through.  When we know catching some rays is unavoidable, we make sure he puts on sunblock.  But any sunscreen that’s worth a damn is just unpleasant.  It’s greasy, it gets in your eyes, it gets in your beard, (Patrick’s beard, that is.  Not mine.  I don’t have a beard), and it stains the hell out of men’s undershirts. 

The rest of the time, he keeps himself covered-- jeans, long-sleeve shirts and a hat.  We considered a classy parasol, but we felt that that would necessitate an extensive wardrobe overhaul and that just ain’t in our budget.  I mean, otherwise, c’mon.  It’s a fucking parasol. 

Manly as fuck.

So we opted for a hat.  This is the Midwest.  Wearing a broad-brimmed hat is so normal here, that if people see you wearing one, they just assume you’re going to go back to your pickup truck and drive somewhere to have rugged sexytimes with Jake Gyllenhaal or whatever it is cowboys do. 

So all this has inspired me to compile a short(ish) list of some basic things people don’t seem to know about kidney transplants.  (Bearing in mind, of course, that I am not a doctor.  This is entirely based on our experience.) 

1. Kidneys: limit one per customer.

People ask us all the time if Patrick got two transplanted kidneys.  No.  You get one.  Uno.  Un.  Eins.  That way, another patient suffering on dialysis can get a transplant, too.  Spread the wealth, y’know?

Fifty percent kidney functionality is all one needs to lead a mostly normal, healthy life.  This is why live kidney donors are able to go through with it—they still get to keep one of theirs. 

Also, people ask us what happened to Patrick’s dead kidneys.  (We like to think of them as “zombie kidneys.”)  They’re still in Patrick’s body.  They do not get removed.  We’ve had people who seemed almost disappointed to learn this, that we don’t get to keep them in a jar as some kind of gruesome conversation piece.  (Though, to be fair, if they did take them out, we would keep them.  In a jar.  Either on the coffee table or on a bookshelf.  So they would be a gruesome conversation piece. . . Our friends know us really well.)  The kidneys, even zombie kidneys, are attached to a freakin’ lot of blood vessels.  It’s an unnecessary risk to remove them.  The new kidney is placed in the front of the body, near the appendix.  So, right now, Patrick actually has three kidneys in his body. 

2. Getting an organ donation frequently means that somebody died.

This is a tough fact to face.  Sometimes, people are fortunate enough to get a live donor.  Kidney donation matches are largely determined by blood type, which means that sometimes, kidney patients can find a donor in his/her family.  A lucky few get an organ donation from a total stranger—just somebody who felt like banking that much good karma, I guess. 

But generally speaking, you probably got your organ from a dead donor.  You are alive today because someone died.  There are few truths as stark as that one.

Due to medical privacy laws, not everyone gets to find out who their donor was.  We were fortunate to receive a letter from our donor’s family.  I blogged about it here. 

While we were awaiting a transplant, we found that medical professionals can get pretty ghoulish about the donation process.  We were on the waiting list for almost three years.  Every time winter weather came around, invariably, at least one nurse would holler, “IT’S CAR ACCIDENT SEASON!”  Like, it’s black ice time, WOO!  All we have to do is kick back and wait for all those plump, juicy, non-pulverized organs to just roll in!  New Year’s is a peak time, as is prom season and graduation.  Anytime there are a lot of drunk drivers on the road, the death rates go up.  And when death rates go up, it means that people are about to get those desperately-needed hearts, livers, lungs, kidneys, eyeballs.  You  name it. 

The math is pretty simple.  Every day, 18 people die waiting for an organ donation.  The average organ donor can help as many as 50. 

If you don’t have organ donor checked on your driver’s license, do it now.

3.  It’s a treatment.  Not a cure.

To be clear: receiving a kidney transplant is not a cure.  It’s considered an on-going treatment.  Patrick has an auto-immune disorder that caused his kidneys to fail.  The immunosuppressant drugs he takes should stop his rabid immune system from attacking the new kidney. 

But no matter what medications he takes, a donated kidney has a finite lifespan.  It could last for as long as twenty years, or as little as seven.  There’s no way to know. 

4.  Drugs. 

I mentioned that people seem surprised that Patrick even needs to take drugs?  Well, he does.  Like, a boatload-- antirejection drugs, mostly, which he will have to take for as long as the kidney holds out, which means that he still carries around one of these bad boys:

In case you couldn’t tell by that parasol remark, we’re all about the accessories.

The medication has to be taken regularly.  The antirejection medication has to be taken twice a day at a very precise time.  If it is not taken on time, his body may begin the process of rejecting his transplanted kidney.  If he is even 15 minutes late taking his medication, the body can begin the rejection process.

Also, a lot of the drugs he takes are hard on his one functioning kidney.  So that 7-20 year life expectancy for the donated kidney I mentioned?  Might be cut short because it requires so many strong drugs to keep his body functioning in the first place. 

So . . . you know when you watch zombie movies, and the survivors all scramble around, trying to stockpile water and weapons and stuff, and you wonder what you would grab first?  I already know the answer to that question.  In case of a zombie apocalypse, I’d be raiding every drugstore I could find for every single capsule of immunosuppressants.  Without them, we’d be going the way of the walking dead sooner than we’d like.

5. Doctor, Doctor, Mister M.D. 

For the first year after Patrick got his transplant, it was doctors, doctors, all the time.  The nephrologist, the kidney transplant team, the dermatologist.  Now, he still has to see them all at least once a year, and get monthly blood tests to make sure all of his levels are all right—creatinine, cholesterol, red blood cells, all sorts of things that give the doctors a picture of his kidney health,  as well as his overall health.

6. Forget about life insurance.

Expensive, completely indispensable-to-survival drugs?  Check.  Routine medical tests and doctor visits, including specialists?  Check.  Shortened lifespan?  Check.  We’re an insurance company’s worst nightmare.

Oh, what’s that?  Does Patrick have a life insurance plan?

HAHAHAHAHAHAHAHA!  Ha. 

No. 

I don’t want to make this political or anything, but . . .

7. Take that steak well-done.

In a cowtown like KC, requesting your steak a well-done is like sacrilege.  Why would you cook all the delicious flavor out? 

Because transplant patients can’t have foods that may contain bacteria.  That rules out a lot of yummy but undercooked/uncooked things, like sushi, or vegetables that can harbor bacteria, such as bean sprouts.  It also means no organ meats.  (Patrick was a fan of menudo before.)  Bacterial infections could wreck that kidney we had to wait three years for.  Starfruit and grapefruit are also off the menu, as they can be fatal to kidney patients.  That's right, I said fatal.  

No one wants 'citrus' listed as their cause of death. No one.

But giving up these food items is a small price to pay when you consider that during his dialysis years he never had any appetite at all.  His weight used to hover around 125 or so.  Now he’s able to enjoy eating again and back to a healthy weight.

Also, kidney patients, like pregnant women, are advised to stay away from litter boxes, which carry the risk of toxoplasmosis.  In other words, he has a lifetime exemption from cleaning the litter box.  So there’s that.

And now, your requisite adorable kitty photo.

Thanks for reading, and, as always, please feel free to leave any questions or comments below!  

Like this article?  Read more about Patrick's and my journey through kidney disease: Hanging Blood, Go Ask Alice, The Heavy Wait, They All Said Life's a Bowl of Cherries But, Hack and Slash, Lessons on Being a Caregiver, or pretty much any blog post labeled "Health."

Sidney’s Origin Story

As many of you know, Patrick received a kidney transplant almost a year ago.  We named his kidney Sidney.  We talk about Sidney quite a bit.

“I think Sidney’s a girl.”

“Sidney likes wine.  I’m going to get her another glass.  She’s kind of a lush.”

“I can’t eat raw sushi anymore because of Sidney.”

“Do you think Sidney would like to listen to some blues?”

And so forth.

---

When Sidney came into our lives, the transplant team couldn't tell us much about where she came from because of privacy laws.  All they would say was that she came from a young donor.  We didn't know what they meant by ‘young.’  Younger than 40?  Younger than 30?  A teenager?

At the time, we didn't think about it too much, except to feel gratitude.  Patrick’s transplant surgery was textbook perfect.  When they wheeled him out of the recovery room, I couldn't believe the transformation.  You pray for instant healing, but you don’t really believe it’s possible—but then I saw him, flushed with color, not the least bit nauseous from the anesthesia.  The kidney was already functioning, which doesn't always happen.    

He was only in the hospital for four days.  At home, he wore shorts around the house.  I remember sitting next to him on the couch and looking down at his legs.  I realized that, after four years of dialysis, I had gotten used to his skin looking gray and withered-looking.  Now it looked healthy-- young and smooth and pink. 

In July, we sent a thank-you letter to the donor’s family.  Any correspondence between donor and recipient goes through the transplant center.  We sent it—kind of uncertainly, but we sent it.  We thanked them for thinking of others even in their time of grief.  It sounds kind of weak, doesn’t it?  It felt kind of weak.  But what else do you do?    

Since then, my Catholic guilt went into overdrive, survivor's guilt so powerful it almost paralyzes me.  What have we done, that we should be worthy of this?  How can we live our lives so that we can be worthy of it?  Every day, I think of our benefactor.  I think of how, somewhere, across six states, there may be as many as 49 other people who carry pieces of the same person inside their bodies.  It gives you the strangest sense of community, of kinship.  Then I think of their family, and I can’t imagine how devastated they must be, the extent of their loss.

So many questions.  So much to think about. 

There have still been some rough times.  No instantaneous cures.  Patrick had to have follow-up surgeries-- one to remove his dialysis catheter, and one to remove the stent the doctor put in between his bladder and the new (to us) kidney.  He had a severe allergic reaction to one of the new medications they had prescribed which sent us back to the hospital.  We continued to struggle for several months with getting his phosphorus levels normal.  We continue to struggle with appetite and digestive issues.  In January, he had to have his wisdom teeth pulled, and he got sick from the anesthetic, which caused some distress—he has to take his anti-rejection medication on time, twice a day.  If he doesn't, then the body can begin the rejection process in as little as 15 minutes.  If he is vomiting and can’t keep down the medication, then he has to go into the hospital to receive the drugs intravenously.  I spent a nerve-wracking day watching over him, poised to rush him to the ER like I've done so many times in the past.  But he managed to keep down the pills.

There was a flurry of follow-up appointments with doctors, with the transplant team.  He had to have blood draws twice a week, then once a week, then every other week.  Now we’re down to the minimum: blood draws once a month.  It will be so for as long as he has this kidney, which we hope will be for a very long time. 

Transplant recipients are at-risk for skin cancer, so he’s been advised to wear sunblock when he goes out.  Now he smells perpetually of summertime, and wears a broad-brimmed hat. 

---

He’s gotten a part-time job.  He’s gone back to school.  To look at him, you’d never think he’d been sick a day in his life. 

In all this time, we hadn't heard back from the donor family.  I had started to think that we never would—not that I blamed them. 

Then, last month, a letter came in a pink envelope.  That letter told us a story. 

---

Here’s the story:

Once upon a time, there was a girl.  The girl lived with her mother, her father, her sister and her brother.  She wanted to be a nurse.  But instead, she died on June 12, 2012.  She was 17. 

She happened to live in Region Eight of the Organ Procurement & Transplantation Network.  Region Eight consists of Colorado, Iowa, Kansas, Missouri, Nebraska and Wyoming. 

The girl had a beautiful spirit.  Her family knew that she would want to help others.  So they donated her organs.  The average organ donor can help or save up to 50 people. 

If she had lived, she would have graduated from high school next month.  And yet, she lives.  New blood pumps through her heart, her eyes see new sights.  She may have helped or saved up to 50 people directly.  Indirectly, the impact she has had on the world has been incalculable.

Somewhere, we all know we have a special angel, our superhero.  Someone so pure and powerful, death cannot undo them.  We are lucky enough to know of her intercession, her grace.  We are lucky enough to know her name.  With every breath, we sing her praises.

Hack & Slash

It is Wednesday night, and I am kneeling beside the tub, wet and sticky. There is a pair of scissors in my hand. The bathtub is filled with dialysate bags.

I puncture one and fluid gushes out, cascading down the drain.

Coyote is over and he, Patrick and I are clearing out the medical supplies in the basement. None of them are reusable, which is a shame, but after three years of home dialysis, I have resigned myself to the sheer quantity of waste the treatments produce. To make matters worse, we had just received a shipment right before Patrick got his transplant, so we are fully stocked.

First, Coyote brought up all the boxes—there were at least forty. Bags of dialysate fluid, plastic tubing, hypodermic needles, bandages, and medical grade hand soap.  We have to sort everything. Then the bags will have to be broken down and put out on the curb for recycling.

The plastic tubing can go right into the trash. The hand soap is also trash because, believe it or not, the unopened bottles have expired. Who knew hand soap expires? (And we had too much of it in the first place because, three years ago, the medical supply company overshipped it. We couldn't use it fast enough.) We might be able to donate the bandages. The unused hypodermic needles will require special handling, so we set those aside.

That leaves the bags of dialysate fluid in five and two liter sizes. All bags have a drain tube in the bottom. Some of the two-liter bags have a length of tubing attached with a blue clip shaped like the eye on a peacock feather. They come six bags to a box-- six eyes peer up at me unblinking as I dump them into the tub.

The dialysate bags are packed in heavy-duty plastic which is hard to cut, and while I’m gratified to know that the medical supply company uses sturdy packaging, it’s not making my job easy at the moment.  Once I cut through the outer plastic, then I have to cut the bag itself to drain the fluid out.

We started working around 6:00. At first, I cut carefully, trying not to make a mess. Now it is 10:30 and I’m just slashing and stabbing, trying to get this over with. As my hands work, my mind is free to wander. I make all sorts of strange and frequently unsavory associations as I set about my task.

Cutting the plastic and the faint, sweet odor of the liquid reminds of the Icee pops my grandmother used to buy for us kids in the summer. The urgent unloading of materials down a bathroom drain makes me think of paranoid drug dealers, dumping their product en masse. (I’ve been watching too much Breaking Bad.) Jabbing my scissors into the pillow-shaped bags makes me think of stabbing someone in the belly, innards gushing out.

This last association is especially troubling, as the connection to bodies -- to Patrick’s body, in particular -- cannot be ignored. This fluid that, just six weeks ago, was being pumped into his peritoneal cavity on a nightly basis. His belly that's been punctured with three incisions on it that are still healing even as we speak.

Yet, there is something savagely satisfying about this—jabbing, stabbing, slashing, hacking. I am definitely working out some aggression on these bags. It’s therapeutic. It's a relief. Relief at finally being able to get all this medical crap out of my house—the relief of not needing it anymore.

I still can’t quite get over how quickly all of this is happening. It's the end of an era in our lives. It's weird having your life so clearly dilineated by events like this-- before Alice, after Alice.

Just six weeks ago, Patrick got the transplant. Three weeks later, the staples were removed. Four weeks later, his dialysis catheter was removed.

Good-bye, Cathy! Hello, Sidney!

Last week, the medical supply company came and got the queen bitch of them all. Unceremoniously boxed up and carted off to her next victim/patient.

Good-bye, Alice!

Thanks for everything, but I’m not sorry to see you go.

---

In another hour or so, we have it all finished—five contractor bags packed with deflated plasticware and tubing that we lug out to the garage. The City of Kansas City, in its infinite wisdom, has cut off our medical trash tags so we’ll have to slowly dispose of everything over the coming weeks rather than all at once. All of the cardboard boxes are ready to go, and I have to say, I kind of wish I could see the recycle guys’ faces when they find the heap we’ve left for them. Ever see that episode of The Simpsons where Bart and Lisa build a castle out of UPS boxes? Yeah. It’s like that.

We still have a chest of drawers in the bedroom full of medical supplies, and some stuff in the hall closet. But I feel like this is a real turning point. Reclaiming our space, our basement, our house, our lives. I’m actually excited now about the prospect of coming home in the evenings, of working on the house. I’m excited about all this empty space. We can fill it with whatever we want.

Where before there was necessity and limitation, there is now only possibility.

Not to mention, there is now a healthy husband to help me with honey-do projects. Can't get much more normal than that.

They all said life’s a bowl of cherries but

The call came around 11:30 on Tuesday, June 12.  For some reason, there was a mix-up in the records and they lost Patrick’s cell number, so they called mine.  I usually don’t answer phone calls from numbers I don’t recognize, but I had a funny feeling about this one, so I picked up.
 

It was Sherry from the transplant center, asking to speak to Patrick.  

I handed the phone off to him.  I knew there could only be one reason that someone from the transplant center was calling us at 11:30 p.m. on a Tuesday night, but all the same, I tried to go back to the chapter I had been working on.  I knew that this may not be it.  This may be a false alarm.  It happens—people on the organ transplant list get two or three calls before it turns out to be the real deal.  Some of them even get to the hospital and get prepped for surgery before the whole thing gets called off—some test shows up that the organ would not be a good match, the surgeon gets a gut feeling (no pun intended), something.  

But I can’t work on the chapter.  My mind has gone blank, and I find myself listening to his end of the conversation, hanging onto every word.  Patrick and I had just gone for a walk.  We had just been saying that, after three years on the transplant list, it was starting to feel like it was never going to happen.

He hangs up the phone and tells me that a possible match has come in.  Sherry said we should go ahead and pack a bag and be ready to get to the hospital.  Patrick should not eat or drink anything after midnight, just in case.  She said they were running tests on the kidney to verify compatibility, check for problems, that sort of thing, and she would call us back by 7 a.m. Wednesday morning at the latest.

But, she said, Patrick should go ahead and dialyze, just in case.  

Just in case, just in case.

She said we should go ahead and go to bed, try to get some sleep. 

Sleep?  Yeah, right.  

To her credit, she did say ‘try.’

---

Patrick packs his bag.  We call only our mothers at this point, because we want them to be ready, but we don’t want to tell anybody else yet.  Then Patrick goes about his usual nighttime preparations—taking his meds, scrubbing in, hooking up to Alice.  This may be the last time has to do it—if not forever, for at least a very long time.

My mind is still blank.  I abandon my work for the moment and decide to take a shower, in case we do have to leave sometime in the predawn hours.  When I get out of the shower, I am too jittery to sleep, so I clean the kitchen.  I fold and put away some laundry.  And then I think, what are you doing, idiot?  Patrick might be in the hospital for weeks.  Go get in bed with him.

So I do, and we lie together, not sleeping.  We find ourselves talking about our favorite memories of each other. 

Patrick recalls our first weekend getaway together—we went down to the Lake of the Ozarks and stayed in a bed and breakfast.  The food was excellent.  He remembers how we hiked together in Ha Ha Tonka State Park, exploring the remains of a castle built by some eccentric Kansas City captain of industry, the spring and the mill pond, the Devil’s Kitchen Trail with its enclave of rock.  I remember a series of stones leading up a hillside, all split down the center like the toes of a deer.

The first thing that always comes to my mind is a hot summer afternoon when we lived in Gladstone.  I think we’d only been married for a year or two.  Our apartment had a very nice, big balcony, and I had determined it needed a container garden.  I had put in many pots of flowers—impatiens, petunias, geraniums, primroses.  We put in a patio set and hung up a hammock.  This particular afternoon, Patrick and I walked to a fruit and flower stand in the hot sun and bought two beautiful hanging pots with florescent-colored bougainvillea, and a big bag of fresh cherries. 

We brought them back to the balcony, hung and watered the plants, then got in the hammock together to enjoy the cherries and the summer evening. 

Very few things in life can be perfect, but I think certain moments qualify.  These are just two out of hundreds.

---

Sherry called around 5:30 a.m. on Wednesday morning, June 13. 

I had Patrick at Research less than an hour later.  The nurses on the renal ward had prepped his room, writing on the white board, HAPPY KIDNEY DAY!

The surgery itself could not have gone more perfectly.  The kidney started working immediately, which does not always happen.  My phone buzzed constantly as friends and family called and texted for updates, and others come to visit.  I never stop being overwhelmed at the outpourings of prayers, well wishes, and support. 

And of course, words simply fail when it comes to expressing my gratitude to our anonymous kidney donor.  Patrick and I will be sitting down to write a thank you letter to the donor’s family very soon.

---

June 13 was a day that dawned bright and sunny, though even if it had been dismal and raining, it would have been a beautiful day, a beautiful moment. 

Patrick’s new state of health is nothing short of miraculous.  He was only in the hospital for four days, and I simply can’t get over how good he looks, how different our life has become literally overnight.  No dialyzing.  No nausea or vomiting.  He is sleeping well.  His appetite has returned.  He is rebuilding his stamina, spending first 10 minutes on the treadmill once a day, then twice a day.  Now he’s at twenty minutes, twice a day.  Even his skin—I had become accustomed to his skin looking withered and gray.  Now it’s smooth and young-looking again.  He’s already perusing the job listings, eager to go back to work.  If things continue to go well, he plans to return to college next spring to finish his degree.

I’m still trying to process everything that has happened—not just since Kidney Day, but everything over the past four years.  Some things still need to be dealt with.  Other things need to be assessed.  Plans need to be made.  How do you make up for four years of lost life?  What is the priority?  The average life expectancy of a donor kidney is 10-20 years.  How much can we cram into that time frame-- how many moments?

And of course, this is all contingent upon his recovery—so far, the only hiccup was an allergic reaction to one of his new medications, and the scary price tag attached to the antirejection drugs.  And he still has many weeks ahead of him, labs twice a week, follow-up visits, more surgeries—the removal of his dialysis catheter, and the stent they put in his bladder in order to attach the new kidney.

But compared to all that we’ve been through, this has been a walk in the park. 

On Sunday, I went to a fruit stand that sets up shop every summer by our grocery store, and bought a bag of cherries.  After dinner this evening, we sat on the couch together, watching TV, and spitting the seeds into a bowl.  

It’s not dainty.  But if it’s not perfect, it’s damn close.

---

we could go out and not even leave the house
a t.v. set and a bottle of wine is just fine
making out on that old pull out couch
watching saturday night live . . .

The Heavy Wait

We received a call right before the holidays from Dr. Murillo's office. As of December, Patrick moved to the top of the transplant list, so the call could come literally any day now, at any time of the day or night, with the news that he is the winner of an all-expense paid trip to the lovely Research Hospital OR and ICU suites. The food is shit, but the door prize more than makes up for it: a gently-used but healthy kidney of his very own.

We have been on the list since August 2009. Is it really possible that two and a half years have already gone by? It seems so long ago. It seems like only yesterday.

For the most part, everyone we meet is supportive and optimistic, but there is a dark, inescapable reality associated with organ transplants. Somebody has to die in order for him to have a better quality of life. I am continuously amazed that some people seem to LOVE to point that fact out.

Healthcare workers develop a pretty macabre sense of humor to deal with the situations they face on a regular basis. The transplant and dialysis nurses become positively ghoulish about the whole thing, especially as we come into the winter months. They are fond of saying, with big, scary vampire grins, "Winter is car accident season!" And car accidents, of course, equal organ donors.

Naturally, this winter has been almost devoid of snow and ice. You don't want to pray for snow and ice. You don't want to pray for somebody else to perish so you can have their vital organs. But you can't help but look out and curse the bone-dry streets. You can't help but wonder, who's in the hospital now? What are their chances? If they don't have some sort of will or living directive, will their family make the right choice? You can't help but pray that someone who was young and healthy is on the verge of expiring from some non-kidney-damaging illness so your loved one can have the best transplant possible.

Soon.

NOW.

I go to New Orleans at the end of this month for an International English Honor Society conference. I'll be gone for four days. I'm petrified that the transplant will come while I'm out of town, that Patrick will go into that situation without me.

The nurses say that, in recovery, transplant patients are almost impossible to keep in bed. They feel so good, they don't want to lie down. They want to get out there and start making up for lost time. No more pain. No more nausea. No more trips to the emergency room. No more dialysis.

Sounds too good to be true.

I have these lines in my head, one from Nabokov, "And the last long lap is the hardest." The other, from a Walter de la Mare poem, "Oh, out of terror and dark to come/In sight of home." If I weren't a fatalistic person before, I would be now. The last two and a half years have been exhausting, a nightmare from which we keep hoping to awaken. Now that there's an end in sight, I keep thinking of the strange and almost mystical intersection of circumstances that will be required to provide the kidney donation-- the right person, the right place, the right time, the right death. Also, even though the past two and a half years have been so hard, I feel like we've both come out of this as better people. Does that make it all worth it? Would I trade who I am now for the person I was two and a half years ago if it meant none of this ever happened? There's no way to answer such questions.

And there's no way to address the deeper issues-- weighing your worthy qualities against your unworthy qualities. Wondering how you will ever be able to demonstrate sufficient gratitude to humanity and the universe at large for the gift you are about to be given. It's this weird twist on survivor's guilt, like that scene at the end of Saving Private Ryan, where the old man is wondering if he'd really deserved all those men sacrificing themselves to make sure he came home.

We heard from the transplant team last week-- two potential matches have already come up for Patrick, but the doctor rejected them. I don't know what the criteria is. Maybe the deceased weren't healthy enough, or young enough. A lot of the time, the doctors just go with their gut-- something tells them that the transplant wouldn't take. They want to be sure before they get Patrick on the operating table, which I both appreciate and understand, but does not assuage my impatience.

The transplant center hosts regular donor memorial services, so people who have received transplants can get together with the families of the deceased and honor their selflessness. We haven't been to one yet. But a long time ago, when I got my driver's license, I checked the organ donor box without hesitation. As someone who has a great deal of experience with medical problems, I also have a living directive on file at the hospital, so there is no ambiguity about what I want done with my earthly remains.

As the requiem says, "In the midst of life, we are in death."

For people waiting for organ transplants, there is a sense that life has been put on hold. Receiving a transplant means that it will be jump-started again.