Transplant: It’s Not Like In The Movies

I’m discovering that so many things we’ve faced in real life lately have had zero relate-ability in my real life prior to this.  Things like kidney failure and dialysis and transplant. We all know the words.  We all know these things happen… but to whom? Not to anyone I knew.  And in talking to so many people, nobody they knew either.  Very occasionally I would meet someone who had an aging relative who had gone somewhere for dialysis. And there have actually been 2 people (one that Mike knows; one that I know) who have dealt with double transplants (simultaneously failing kidney and liver) just recently.

But by and large these seem to be foreign ideas.  Something that happens to other people, somewhere else. Nobody had ever seen someone receiving dialysis, hooked up to a machine.  If I talk about our dialysis sessions, I have to short hand the description of the process to most people, not because they’re too dumb to understand, but because it’s mind numbingly boring and detailed… and icky.  And not really good lunch or poolside conversation: see there’s a machine and masks and there are these really big needles, and… stop, stop right there.  Like so much of the journey with Michael I find myself feeling like I’m speaking a foreign language to people and it’s easier to switch topics rather than bore them with an unwanted lesson.  Right now they’re biology lessons; previously they were special ed or IEP lessons.

Our current new Thing is the transplant application process.  Part 2.  As I’ve mentioned we applied to Baylor about 2 years ago, before we started dialysis, and they turned him down.  Said they wouldn’t perform the surgery on him.

So now we’re at UT Southwestern applying to get on their transplant list. Prior to us going through this process, my base of knowledge for transplants probably best came from TV and movies.  On the screen, either a reeeeally sick kid needed a transplant and was lucky enough (if a donor dying in a car accident can truly ever be considered lucky) to get a timely match, or someone was suddenly stricken with kidney failure and had a buddy with just the right kidney to hand over. Boom, all better.

And I think that’s where most of us fall in the Transplant Application Knowledge Department:  You have kidney?  I need kidney.  Doctor, put in kidney.  Roll credits.

What we have found out is that the process for transplant is much more complex than that.  And even more complex for a patient like Michael. Every person that wants a working kidney to replace their failing or missing kidneys has to be approved by a hospital transplant committee before they get put on the list.  A committee decides whether you can go on the list to receive a kidney.  A committee decides whether a person can have the surgery.  It’s not enough that the patient has a non-working organ and needs a functioning one.  They have to run through a gamut of tests.  They say it’s to make sure the body doesn’t have any other issues that would make it any more inhospitable to a new organ than a body already defaults to.  But to me it feels like they are having to prove they’re worth the new kidney.

And it’s a many layered process.  There is a paper application to complete, outlining your medical history, including all past medical conditions, all potentially harmful habits, and all genetic factors.  Your height and weight are checked. You have to meet with various doctors to talk about the risks involved with the surgery, and what to expect after the surgery–the many doctor appointments you will have to attend, the types of medications you will be required to take for the rest of your life, the changes to your lifestyle that you will be expected to adhere to.  You have to visit with a social worker to ascertain what your support system is like.  You have to submit your income and your medical insurance information.  There are medical tests that must be performed and passed including an MRI, a CT Scan, an echo cardiogram, an EKG, a 6 minute walking stress test, and so much lab work to check for so many things that they will draw 25 (count ’em 25) vials of blood.

Any number of things can toss you off during the application process, which is why not everyone is approved by the selection committee.  Even if you have a living donor all lined up they can still deny you the necessary surgery.  Many people are told “No, you are not a candidate for transplant” and at that point, the applicant will have to continue on dialysis forever… or as “forever” as they have before something gives out and they die. And there are some people who refuse to go on dialysis, or refuse to continue dialysis, and they will die, sooner than later, from kidney failure complications.  Because, while dialysis is a life extending and life saving measure, it is fraught with a long list of negatives.  The short list:  it’s tiring, it can be painful, and it never fully replaces the miraculous function of a healthy, undamaged kidney.

For a patient like Michael, with a more complex medical history than most, the hurdles to get over to be on the transplant list are higher and more numerous.  His current medication regimen has to be reviewed to make sure it’s compatible with the post transplant rejection medication regimen.  Can’t have the regimens fighting each other. His seizure disorder was a flag, and we had to meet with the staff neurologist, not something every potential candidate has to do.  We need an additional MRI on his brain (cuz one just wasn’t enough!) to assess future potential malignancies.  His low weight has been a concern this time around, just as it was when we applied at Baylor.

They want to know that he, like any other applicant, is as healthy as can be (other than the pesky damaged organ that needs to be replaced, of course) to reduce the risk of the body rejecting the new organ.  I get that.  I understand the importance of wanting the best housing for the donated organ.  I understand that these organs are scarce and fragile and precious.  The wait list for a Cadaver Organ is 3-5 years,  which tells you how scarce they truly are.  It just feels that, as with so much with Michael, things are harder and less forgiving, even within a process that’s difficult in its own right. You’d think I’d be used to this feeling by now.

But we plod onward, holding onto hope that this hospital network will be able to work around all of the obstacles.  That they will see that we are as willing as ever to continue to care for and support Michael, to give him the highest quality of life possible.

I’ll keep you posted…..

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Round 2

I know it’s been awhile since I’ve blogged on anything.  And by anything, of course I mean dialysis.  What else is there?  I mean yeah, we still have other components in our lives, like school and work and Operation Kindness volunteering and Texas Rangers game attending and dog monitoring (these are 3 old old dogs, yo) and holidays and birthdays and meal preparation, all of which many other families partake in.  Okay maybe no other family goes to 25+ Rangers games every year and takes one or more of their leaky, rotten-toothed dogs to the vet every month… or maybe they do.  Maybe we have a doppelganger family out there. I don’t profess to know the whole world’s doings.

If they are out there, and if, on top of being Rangers fans and leaky dog owners, they also administer dialysis to a family member…well then stand up and be counted because we have GOT to meet some day!!  Until then I’ll continue to believe we’re the sole partakers of this particular bizarre trifecta.

Anywhoooooo.  Yes, Michael is still doing dialysis.  4 days a week, 90% of the time on Tuesday and Thursday evenings plus anytime on Saturday and Sunday.  Sometimes we’ll do a Friday night session to give us a full Saturday off because… weekends!  Sometimes Mike has a late meeting scheduled for work on a Tuesday or Thursday and we’ll rearrange the schedule to accommodate that.  But with volunteering at OpK usually reserved for Mondays, and scouts and volleyball practice on Wednesdays, the default schedule works most weeks.  Fitting 25+ Rangers games into that? That requires nothing short of finesse, baby.

We are finally in a place mentally where we don’t feel overwhelmed or panicky at the idea of dialysis anymore.  The routine of the process has definitely become routine.  We have a handle on the logistics and the machine; we know what is normal and what is not; we know which foods are good, bad, better, and forbidden; and we have added and subtracted medications to coordinate with the changes the process has brought.

Most importantly, we’ve seen the results that dialysis brings. We go once a month to visit the nephrologist and his team to hear how Michael’s labs are (stellar, perfect, all in range, way to go Mom and Dad and machine) and talk about the Rangers. And about getting him on a transplant list.

When we applied at Baylor and we read the letter that said “NO! NO! NEVER, GET OUT, YOU’RE UNWORTHY!!” (which is how I hear any form of rejection) … there were apparently some, uh, caveats, that sort of… kind of, actually meant maybe. One caveat had to do with his existing kidneys, the other his weight.

First we would have to agree to remove his existing kidneys when they implanted the new kidney. Apparently in a kidney transplant it’s routine to just add the new kidney on. Here, have 3, they’re small. That way any residual function from the original kidneys can still continue.

Michael’s  existing kidneys are full of benign cysts.  Polycystic kidney disease, perhaps you’ve heard this mentioned in some of the new Baylor transplant ads that I seem to see on TV all the time… but maybe my ear just bends that way.  Their concern, founded or un, is that over time those kidneys, already being compromised, will be more likely to become cancerous.  And who wants to give a guy a good kidney when his old kidneys are just going to tumor up, amirite?  Okay, fine, you get him on the table with a new kidney ready to go and we’ll give up the old ones.  Right now they’re still actually producing some urine so they do have some use left.

The other thing they were concerned about was his weight.  Or lack thereof.  He’s a thin dude.  Super thin. With a BMI of 15.5.  They want to see his BMI up at 20.0.  That’s a weight gain of almost 30 pounds.  Onto a child (always in my mind) who has genetics working against him, and a frustrating disinterest in food.  He eats until he’s not hungry, and then he’s done.  We could all take food lessons from this kid.

So what do we do with a guy that only wants to eat the bare minimum?  Well first we tried a pill that was supposed to increase his appetite.  And of course that didn’t work.

And then we tried liquid nutrition drinks for extra calories.  First, one specifically formulated for kidney patients called Nepro.  And later a high calorie version of Boost. Both of them caused severe diarrhea.  I will spare you the details of the horror, and the bad language, that resulted from dealing with this.  Suffice it to say that I am on record as believing that there is nothing, NOTHING, worse than a grown person who cannot control his bowels, who has diarrhea.  And guess what?  He didn’t gain any weight anyway. Squirted all the calories away is my guess.

And finally we got creative with foods.  He doesn’t like sweets, so the idea of plying him with calorie rich cakes and cookies wouldn’t work.  Dairy is on his forbidden list, so even if he liked ice cream he’s not supposed to have it.

We looked at the foods he could have, and the foods he does like, and we made them as calorie dense as possible.  We put as many of his foods on tortillas as we could to add an extra 130 calories (bread only has 70) and we added tablespoons of butter and olive oil to everything. His post-dialysis (when he’s the hungriest) breakfast burritos literally dripped to the point we put a piece of torn bread in the end to plug them up.

And guess what?  It’s been 16 months and he hasn’t gained a pound.  This is, I’m certain, where genetics is the culprit.  The majority of my side of the family has always been bone thin.  My dad, one of my brothers, and myself especially.   No matter what we did, or what we ate, we just didn’t ever gain any weight. Of course once we turned 40 our metabolism apparently leveled out and we suddenly had to deal with belly fat like most people do.  That was kind of a weird and rude awakening.

But Michael is only 26.  40 is a long time, and many dialysis sessions, away.  And while we are good and competent and efficient at administering dialysis, it is tiring.  It is a lot.  It is always, always there–to be done, to be worked in and around, to be considered before anything else that we do.

So at our last nephrology visit, the doctor suggested that maybe, MAYBE, we could explore another transplant team.  Maybe, MAYBE, this one wouldn’t be as restrictive on their acceptance policy.  Maybe, MAYBE, they wouldn’t hold his weight against him. Maybe, MAYBE, they could see that we have been model caregivers and can handle whatever responsibilities lie with taking care of Michael post-transplant.

We’ve begun the process now with UT Southwestern.  Application paperwork filed, and our first appointments made.  Let the juggling of our schedules and the other child begin. Fingers crossed, prayers sent up, expectation level set low.  Because disappointment hurts… and if you expect nothing from the world, you can’t ever be disappointed, right? That’s my bumper sticker, and I’m sticking to it…..

 

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100 Times in 6 Months

When I last blogged about Michael and our journey with him through dialysis, we had just gotten into the rhythm of doing home hemodialysis.  In that blog, I outlined the process that we go through each time we administer dialysis–the set up, the take down, and all the ups and downs in between.  I also mentioned that we were mentally in a quirky spot, trying to wrap our heads around the Forever aspect that is dialysis because dialysis (we are frequently reminded) is a treatment, not a cure.

It was a very dark time for us, one where we tried to not get mired down in dark thoughts but not sure how to avoid them. Where we tried to be careful not to snipe at each other because each other was kind of all we had to lean on and we couldn’t afford to lose our balance. And where we tried to not be overwhelmed with the feeling of “this is for forever and we have to do this for forever and this is all we’ll ever be doing and we’re trying so hard not to resent this machine and all it represents as far as our future and our freedom forever and ever and ever.”

But we were.  Mired and snipey and overwhelmed.

It felt like every sentence I said had the word “dialysis” in it. What did y’all do last night? Dialysis.  Can you come to Bunco?  No that’s a dialysis night. You know, we should probably go to the grocery store before we start dialysis. Are you going to Book Club?  No we’ll be doing dialysis. We have tickets for that Rangers game, but I guess we’ll have to sell them because that’s a dialysis night.   Can Riley come over to play?  Absolutely she’d love to– I can bring her over but can you bring her home because we’ll be doing dialysis by then. Want to meet for dinner?  Sure, we’ll start dialysis at 2:00 so we should be done by 4:30 and can meet you by 5:30.  Unless there’s a problem during dialysis and it goes long, in which case I’ll text you.  During dialysis.  Cuz, you know, we’re doing dialysis.

Dialysis, dialysis, dialysis… like the ooze in The Blob, it rose up and took over, drowning and crushing all of our normalcy.  That’s how if felt at the worst point.

And while we still talk like that, and think like that, and work our schedule around that… it doesn’t feel quite as awful anymore. It almost, somehow, has become okay.  It’s this thing we do, four times a week, every week.  It’s still as long and convoluted and slightly scary and often boring as ever, but it doesn’t feel like it’s controlling us anymore.  We don’t feel drowned or crushed.  It’s not overwhelming.

Maybe the overwhelming feeling has subsided because we’ve seen what a big difference it has made to Michael.  How much more energy he has, how much more interactive he is, how much better he eats, and how much improved his health numbers are.  Everything that was out of whack in his lab results have been fixed through dialysis.  Twice a month Mike draws blood as part of the pre and post times in the dialysis sessions and packages it up to be sent to the lab.  Within 2 days the lab result numbers are posted online. And the results reveal that everything has improved considerably.

Then once a month we meet with the dialysis team (the nephrologist, a nurse, a dietitian) and we discuss his lab results with them. And at each of those meetings, we have been given high praise and positive feedback, as things roll along in the right direction.  We’ve mastered the process and we see that what we’re doing is working, and is helping to improve our son’s quality of life. Overwhelming took a back seat to Overjoyed at some point.

Or maybe the overwhelming feeling of home dialysis has subsided because we’ve done it so many times.  To be precise, we’ve done it 100 times.  Under our control, on our machine, with our hot little hands: 100 times.

I didn’t think it had been that many times, but it had.  How do I know?  Well,  I’d read a status on one of the Facebook Home Hemodialysis pages (did you KNOW there are Facebook Home Hemodialysis pages?) about someone hitting their 1,000th treatment mark.  I thought, “1,000?  What, have they been doing this for 10 years?” ( because my fairly impressive math mind apparently wasn’t firing on all of its usual cylinders in that moment)

So I got out our binder where we keep the flow sheets where we record all of the data during the dialysis sessions.  Every 30 minutes during dialysis we have to record Michael’s vital signs and jot down some machine readings and a bunch of other thingamagoobies that keep us kosher with the dialysis treatment center and possibly some laws somewhere, and we keep the sheets in that binder.  I flipped it open to the first session, which you might remember was on Valentine’s Day (Romantic dinner?  no, sorry, we were doing dialysis) and numbered that sheet #1 and then marked all of the rest of the pages stopping at #99 on Thursday.  Which meant the session we were about to begin on Saturday when I started counting was going to be session #100.  How fortuitous that I chose that day to do the count, am I right?  Weirdness.

This meant that session #100 was about 1 week short of the 6 month mark of doing dialysis at home. 6 months. In some ways (like everything in life) it feels longer, in some ways shorter. During that time, we’ve handled machine malfunctions (we’re actually on our 2nd machine because the 1st one just refused to reset itself one day and they sent us a new one the next morning), alarm codes, emergency shutdowns, and… vacation!  Twice we’ve taken this bad boy to the beach and done a dialysis session on Michael in the condo.  It wasn’t my ideal way to spend that particular 4 hours, and it CERTAINLY wasn’t Riley’s ideal way to spend that particular 4 hours.  She voiced her displeasure out loud, not happy to waste vacation time sitting in the room.  I reminded her that Michael couldn’t go more than 48 hours between dialysis treatments, but since we had dragged the machine to the beach to “waste” that time doing dialysis, we were able to stay an extra 2 days at the beach.  Her math mind WAS firing on all of its usual cylinders and she quickly realized the upside to that equation.

If I had to pick something that hasn’t 100% worked itself out during the 100 treatments, it would be how this has affected Riley. At first we thought we’d just let her do whatever she wanted to do while we tended to Michael and the dialysis sessions, but we quickly found out she wanted to be part of what we were doing.   So now we try to involve her in as much of the treatment as she wants to be on any given day.  She  has taken his temperature and his blood pressure before we start; she puts on gloves and a mask so she can tape up his arm after the needles are withdrawn and the bleeding finally stops; she helps Mike with the post-treatment blood pressure and weigh in; she cracks the 3 eggs that are often the basis of his 6 Breakfast Burrito late-night dinners when he’s starving after dialysis; and she’s peeled off the wad of tape and gauze on his upper arm after the minimum 4 hours has passed.

We all sit together in the gameroom watching a movie or a Rangers game during the treatment, with the volume turned up to override the machine’s hum.  But it does feel like Mike and Michael and I are all on one side of the room tending to Michael to keep him quiet and seated, while she is separated from us, especially during the beginning and ending sections, where the needle insertion and withdrawal happens.  If she’s talking when the machine beeps signaling it is time to record data, we have to halt her mid-sentence because we only have a 2 minute window to get that done.  After we get everything started, she will often squeeze onto the arm of the recliner to sit near us, or she will bring a deck of cards over for me to attempt to play a game of Crazy 8’s with my one free hand.

She frequently asks on dialysis nights, “Are we doing anything tonight besides dialysis?” This is such an odd question when I hear it, made even odder since she doesn’t usually ask it on non-dialysis nights even though we rarely do anything outside of the house on those nights either.

This is the one thing I don’t know how to undo or to fix–her feelings about this part of her life.  Each of her siblings has grown up being involved with Michael in various capacities: vacation constraints, being the focus of unwanted attention, early departures from get-togethers, untimely and unfortunate smells. But never has our involvement with him been as time consuming as it has been during the dialysis treatments, and she’s the only one at home to be dealing with it.  It’s natural that she feels left out and in some ways, jealous.

Obviously she understands the importance of the process. We’ve explained what kidneys do, how Michael’s aren’t doing it, and what happens if we don’t do the treatment.  She’s seen him at his sickest, and definitely doesn’t want to see Michael revert to his not eating, not happy, oh no he’s going to throw up again, days.  She’s never suggested that this be something she wants us to stop doing.  But I know that if it feels to ME like a lot of time is spent revolving around Michael, it has to feel even more disproportionate to her.

We muddle through as best we can as we are wont to do.  Muddling experts, as we all are in life.  We keep her focused on her activities.  We’ve tried to maintain as much normalcy as possible: volunteering at the animal shelter, going to Rangers games, having playdates, going to summer mini-camps, going on vacations (both the kind tempered by a dialysis treatment, and a shortie trip without Michael while my mom watched him for 48 hours), and having regular family time going out to eat, watching movies or swimming in the backyard.

Normal things in a decidedly abnormal environment is the best we can offer.

Meanwhile, abnormal has taken us into our second set of 100 sessions of dialysis.With the machine and the paperwork and the labwork and the meetings. With the needles and the blood and the tubes and the numbers and the gauze and the tape and the tubes and the tubes.   Cuz, you know, we’re doing dialysis.

 

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On Cousins

I grew up as one of 4 siblings.  I’m the 2nd in that set, with an older sister and 2 younger brothers.  Our parents grew up in Indiana. They spent their whole lives in small towns in close proximity to each other.  They dated as teenagers, fell in love, and got married after my dad graduated from Tri State University in Indiana.  His first job assignment was to Seattle, and after that they ping ponged on a journey that took them to many places, but never back to Indiana.

My dad’s job was such that as a family we relocated every few years, pulling up stakes, moving to the new locations to start new schools, make new friends.  The longest stretch we had was in Maryland where we lived for 7 years in 2 different houses, which for me was grades Kindergarten through Sixth Grade.  Every summer we’d get in the car, driving to make a pilgrimage from Maryland to Indiana. Back to see ALL of the relatives, the ones I thought of as Our Parents’ People.  That was our annual vacation.  2 days of 6 people on a car trip in an Oldsmobile Ninety Eight to get to Indiana, followed by 2 days of 6 people on a car trip in an Oldsmobile Ninety Eight to get back to Maryland.  And in between those long, hot, stop touching me, he’s touching me, stop breathing on me, she’s breathing on me, move your leg, can I have a drink of your coke, yes you can use my pillow but don’t get any food on it car trips, was a well orchestrated agenda of Seeing Old People.

At least that’s how I remember most of it.  As I said, both of my parents spent their whole lives in those small towns.  And their people before them had lived there all of their lives, seemingly for generations. So there were a lot of them.  And we had to see all of them.  Like the ones with the operating dairy farm, not to be confused with the ones with “just” the cows. The spinster aunt in a museum-esque house and the widowed great grandmother who spoke not a word of English. The aunt who served us Tab cola in a room that looked like a green house. The cousin whose house we went to and (for convenience, thank you) would have all of his siblings over for one big visit there.  At the time I couldn’t always remember which parent they were related to, as they were just referred to as Uncle so and so and Aunt whatsherface and Cousins Tom, Dick, and Harry.  No seriously my mom has cousins who are 3 brothers named Tom, Dick and Harry Lee.

And then interspersed with all of the Seeing of the Old People, we’d get to visit a few cousins.  Like, our actual age cousins.  On my mom’s side was her sister who had a boy my sister’s age and a girl my age.  On my dad’s side was his brother who had a girl my age and boys each of my brother’s ages.  I totally lucked out in the Indiana cousin lottery.  Two girls!  Each my age!  And even more importantly, we got along.  I think back on that now.  That as bored as I was on the Old People Tour, how much worse would it have been if the cousins I was told to “run along and play with” had been total crappers?

I do remember, though, that the cousin on my mom’s side made a terrible first impression.  My earliest cognizant memory of her was walking into her room when I was about 5.  She had some sort of toy blender and she looked at me and said, “I have a blender and it makes chocolate milk and you can’t have any.”  I don’t remember if I ever did get any chocolate milk, but I do remember her dad (my uncle) taking us to a candy store that day and buying us enough candy to make up for whatever deficit may have existed.

But every memory after that one that I have of spending time with that cousin is golden-tinged on reflection. The skits we created, the puppet shows we put on, our trip to a fabric store, listening to music in her room, playing with her dog in the garage… and dimmer things I can’t put a title to but that make me feel good when I think back on… I see her carrying a bowl of watermelon, I picture a row of dolls in her room, I hear her very distinct laugh….

Her brother was there somewhere… louder, cockier, older.  He and my sister being thrown together by age, bonded by being the eldest sibling in the respective families.  I was always slightly afraid of Jay Jay, as we called him back then.  I was a tiny child, skinny as a rail with teeth out to there and stringy hair cut to here.  Jay Jay was big.  He liked showing off, he liked teasing his sister, sometimes carrying things too far as brothers are wont to do, forcing a parent to intervene.  And I’d stand there, big eyed and mute, partly hoping that he’d pick on me, mostly terrified that he’d pick on me.

He grew up to play, unsurprisingly, football.  One summer memory I have was on one of the very few trips we made to Indiana after we’d moved to Texas.  I was in middle school, Jay Jay in high school.  We walked to the football field to watch him practice and while I don’t remember the practice much I vividly remember walking backwards and falling into a 4 foot deep hole in the ground and bruising a few ribs.  Not Jay Jay’s fault but I can’t think of him playing football without remembering that personal injury.  And I STILL don’t know what the hole was dug for.  Or how in the hell I missed it.

As adults we drifted apart, we cousins.  My mom has always been very close to her 3 sisters so I’ve heard the news on all of the cousins over the years. Who graduated, who got engaged, who was employed, who was giving birth. We’ve traversed the country, attending each other’s weddings and reunions as schedules permitted.  But much fewer and farther between as the years passed and schedules grew more convoluted. The 3 California boy cousins, the 3 Missouri girl cousins, and still in Indiana:  Jay Jay and his sister.

As an adult, Jay grew a beard and dropped a Jay.  He was just Jay now, when I’d hear news of him. He got married, did some teaching, had 2 girls, was a coach.  Got sick.  Went into remission. Got better.  Got sick again.  Didn’t get better.  I would get notes and texts from my mom with status reports.  How often I would drop my head after one of the texts and say a quick prayer, toward the end sending notes to my aunt wishing her good wishes, hoping for the best.

And then 2 weeks ago the news we had hoped wouldn’t come did come.  Jay lost his battle. Jay’s wife and kids lost their husband and father.  My aunt and uncle lost their son.  My cousin lost her brother.   I lost the first of the 8 of my maternal cousins.

In that chain of command, I realize my loss is nowhere near the depth of the ones closest to him are feeling. I grieve for my aunt and uncle as a parent because it feels wrong for any parent to bury a child, at any age.  I grieve for my cousin who lost her only sibling, her first friend.  I grieve for my cousin’s wife and children because I know the blessing that a good man brings to a family, and the hole that must be felt now that he’s gone.

Losing a cousin does something to wobble your childhood.  The memories of my cousins, even though we’ve grown old and apart and lost contact, are still integral parts of my early family life.  The best parts of my family vacations.  A testament to the good people in my family.

I wasn’t ready to let any of that go… to let any of them go.  Rest in Peace, Jay Jay.

 

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The Doing Of The Things….

 

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I’ve had a few people ask for updates, ask how things are going, ask how we’re dealing with everything.  My answer waffles between the socially expected and accepted “Fine!” to the brutally honest “Shitty!” … but I usually eek out a fairly indistinguishable “Mmmmmeh-bleh-pffffft” and then sort of laugh. It gets the point across that things aren’t all hunky dory, without being specific. Most people let it go at that point, realizing that they have not gotten the happy answer they were looking for and are relieved to back away.

I have learned in life that people don’t really want to know that your life is shitty. Few people are close enough to you to really WANT to know about the bad side of your life.  And if they hear that things aren’t going well, then they feel awkwardly bound to say something reassuring or do something helpful… but they rarely know what is the correct thing to say or do (nor do I), so they stumble through a messy exchange, fervently wishing they’d asked someone else how THEY were doing.

So in all of my human kindness, I try my best to spare them that.  Mostly because I’d like for people to continue to interact with me and I realize that if every time they talk to me I become a dervish of negative, whining energy, they will avoid me.  And I do need some peoples around.

But here, on my keyboad, in my world that is the blog, I can say whatever I want, I can say it all.  And if it makes people uncomfortable, they can just pretend they never read it.  And none of us will be the wiser.

So here goes.

After spending 6 weeks (4 weekday mornings per week) at the dialysis center being trained, we have spent the last 7 weeks administering dialysis to Michael in our home.  We have relegated a sizeable part of the gameroom to this task.  We have a giant recliner that we cover with a king sized waterproof mattress pad to protect from blood spatters.  We bought a hospital utensil tray for the supplies to be used during dialysis.  That stands between the recliner and the giant dialysis machine that beeps and whirs at random times, and radiates heat like a mofo.  On the other side of the recliner is a book case we’ve had for years, but it now houses tape and gauze and syringes and masks and tweezers and tourniquets and a blood pressure cuff and a thermometer, and alcohol wipes and various sterility-ensuring items etc etc.  Now of course, me being me, the open shelves have decorative baskets set on them to hold the supplies.  Because heaven forbid we have plain brown boxes of ugly medical supplies showing!

Oh, and the game room closet!  The one that used to be thought of as the Game Closet, with a future earmark to being converted to a dry bar upstairs when we converted the upper half of the game room into a sports-themed fun adult area.   It’s now half full of stacked boxes of the big supplies like cartridges and dialysate bags and  tubes and needles and saline sacks and… well… dialysis STUFF.

We use the supplies from both areas as needed, and we order supplies as we get low, from 2 different medical supply companies.  Each month  online forms come asking what we need, so we fill out the request forms, and a few days later more boxes show up on the front porch.  I cannot begin to tell you how many cardboard boxes we have opened, sorted, broken down, and sent to the recycle can in the garage.  So. Many. Boxes.

So the supplies are there, the area is set up, and we now have our routine mostly in place. Our “official” prescription given to us by the nephrologist for administering dialysis is every other day, 2 hours at a time.  Which would mean Monday, Wednesday, Friday one week then Sunday, Tuesday, Thursday, Saturday the next week, alternating ad infinitum. It sounds good and regular in theory, but when you look at the calendar of activities in your life they rarely line up with this sort of schedule. If you have a child who plays a sport (and we do) then practices are the same day each week.  If you have a child who wants to volunteer at an animal shelter on a particular day or two each week  (and we do) then you need to leave that particular day(s) open if you can.  So we looked at our calendar and decided that Monday and Wednesday were consistently busy evenings, while Tuesday, Thursday, and Friday were not.  And weekends always had some free time in them.  So we settled on a schedule of Tuesday and Thursday nights, and then anytime on Saturday and Sunday.  A  consistent 4 treatments a week. And we know that this treatment schedule is flexible so we can move the 4 days around if we need to; this is just the schedule that works best right now.

I mentioned up there 2 hours at a time.  That 2 hours is just the time Michael is actually hooked up to the machine, when his blood is being cleaned and dialyzed.  There is also a certain amount of pre work, or set up, time and some post work, or break down, time. First we have to decide what time are we going to start so that we can put some numbing cream on Michael’s arm to make the needle entry as pain free as possible (it’s still not pain free) and time it so that the numbing cream is most effective.  They estimate that it takes an hour to be at its optimum numbing potential.  I sure wish he could tell us if that’s true.  He winces just as often as he doesn’t, even at the supposed peak one hour time.

30-40 minutes later, the machine has to be loaded with a special cartridge full of tubes that have to be hooked up to a saline bag and to the dialysate liquid.  This takes a few minutes to load and 15 minutes to prime.  During the priming stage,  Michael has to be weighed, have his blood pressure taken (both sitting down and standing up), a rectal suppository inserted to ensure he has no big seizures during the process, and his temperature taken.  There is a flowsheet full of data that has to be filled out each time to record all of the vital signs we just took, as well as information regarding the machine’s lot numbers for the various parts.

Next we program the machine with the numbers we decide based on his weight for the day.  This part has been very difficult for us because it has truly been a guessing game.  There is a target weight, called a dry weight, that we are trying to hit.  Dry weight is the amount a person weighs when they have no excess fluid in their body.  For most dialysis patients it is simply a matter of knowing how much they typically weigh, calculating how much they drink minus how much they urinate (if any) and taking off that amount of liquid that is unaccounted for and presumed to be excess.  Our issue is that we have no idea how much Michael  should weigh.  Since his kidneys have not been functioning we know he’s had a build up of waste products but he also has been retaining fluid.  He still urinates but he’s not urinating out as much as he’s taking in in liquids.   Typical dialysis patients also can determine if they have any bloating, if their lungs feel full or heavy, if their blood pressure is elevated, and a couple of other key things.  Michael is so bone thin he really has no visible water retention, he can’t tell us how his lungs feel, and since he wears pullups and has accidents we can’t get an accurate measure of his urine output.

So we make our guesstimate.  We don’t want to pull too much fluid off because that will cause cramping and pain as we’d basically be dehydrating him.  We watch for signs of that throughout the treatment as the fluid is removed (we can see the number of liters decreasing on the machine readout) and we have saline at the ready if he looks like he’s in pain and we can push some back into his system.

We do know we have been successful in one key area, because his blood pressure is significantly lower than when we started.  Too much fluid in a body causes blood pressure to go up.  His numbers the first few weeks were in the 130’s/90’s range (even on 3 different blood pressure medications) and recently we’ve been consistently in the 100’s/70’s range and NOW have to be careful it’s not dipping too low.  We’ve come completely off of one (out of 3) blood pressure medications and are in the process of weaning him off of a second one.  That was a huge hurdle to overcome.

Okay!  Now that all of the prework is done and the machine has been programmed with his prescription for the day, we finally put Michael in the rocker-recliner and flip up the footrest so that the chair is just a recliner.  Rocker would be bad.

After we don our masks and gloves, the next task is to pick off the scabs that have formed over the access (entry) holes so that Mike can insert the needles without shoving old dead scabby skin into his system. Sometimes this takes 30 seconds and sometimes it takes 5 minutes.  Crazy disparity there for scab picking.

Then comes the actual beginning of the dialysis process. I kneel on one side of the chair and position myself so that Michael can’t kick his legs, can’t reach over with his right arm, and can’t move his left arm so that he’s as immobile as possible when Mike inserts the needles.  He cleans off the site with 2 antiseptic cleaners then inserts the needles, one at a time, while I hold onto Michael and watch his face for signs of distress.  Obviously this is my least favorite part.  His reaction ranges from a body jerk (the worst) to his eyebrows furrowing in pained confusion to a glance over at his arm to see what’s up to no reaction at all.  Once he was “singing” to himself (he makes random humming sounds to entertain himself and I call it singing) as we started and he didn’t even pause in his song as the needles went in. I keep hoping for more of those days.

Then Mike primes the lines (lets the blood flow to the end of the tube line) and runs the lines to the saline bag hanging on the hook. Twice a month we have to draw labs to be sent for analysis.  Mike inserts the lab tubes into the arterial line and pulls out whatever they are requiring that week.  There’s a whole set of steps for the vials of blood including a centrifuge for spinning it, then refrigerating it, then packaging it on ice to be picked up by a FedEx dude.

And now, FINALLY, we’re ready to actually start the dialysis.  We check to see that all of the color coded connections are set right.  4 sets should be open, one set should be closed. Then we both take a deep breath, say “Ready?” and push the buttons to start the machine.

If everything was done correctly, the machine makes a start-up whirring sound and the blood begins to flow out of his arterial line through the tubing that runs through the cartridge in the machine where it flows through a large tube that somehow allows dialysate to clean the blood without actually mixing into his blood, then back out of the cartridge and into his venous line.   Over and over and over the blood flows out and then back in.

We record the start time, do a blood pressure reading and watch the numbers on the machine that show the various pressures from the needles.  If the needles are positioned incorrectly, an alarm will sound; if there’s a kink in a line, an alarm will sound; if there’s a leak in any of the tubing or equipment, an alarm will sound; if Michael jerks his arm or bends his arm, an alarm will sound; if his blood isn’t flowing correctly, an alarm will sound; if we haven’t sacrificed the correct chicken, an alarm will sound.

And it’s not like the alarms sound and you get a read out with words like “Arterial needle out of position.”  No, you get a number.  A Yellow 10 or a Red 24 or a Red 38 or whatever.  I think there are 60 different alarm codes.  And you have to flip open the book if it’s not a common alarm to find out what it is, and what to do to rectify it.  A few we know already because they happen fairly frequently and we quickly fix them.  A few we’ve had that were new to us, but we were able to overcome.  And then there were a few we’ve had that we couldn’t fix even after a call to the Help Center and we had to terminate the session.  THAT is the WORST feeling EVER.  To be less than an hour into the session and have to terminate.  When you terminate a session because the alarm sounded and the machine refuses to start again, you lose all of the blood that is in the tubing and in the machine. Twice in one weekend we had to terminate and he lost 277 cc’s (about a half a pint) of blood each day. For a kid who has struggled with anemia and red blood counts, he doesn’t need to be spending time making new blood.

Ever since that weekend (when we were told to come into the Center on Monday morning to ensure he’d get a good session with a nurse watching over us because it had been too long between sessions and his blood needed to be cleaned… it felt like being called to the Principal’s Office) Fear Of Alarms is the number one stressor in my life.  I sit there during the 2 hours, holding Michael’s arm, recording data, watching TV or surfing the internet, completely tense waiting for the dreaded dinging signalling something is wrong.  The past few weeks we haven’t had any alarms, but that doesn’t make me feel any more reassured or any calmer.  I just keep waiting for the Bad News Ding.

But meanwhile, when things aren’t dinging, Mike and I sit one on each side of him, holding his arms for the 2 hours.  Every 30 minutes we have to do a blood pressure check, and write down some other numbers the machine is showing, and verify we’ve checked his needle sites to show he’s not bleeding out onto the floor (short sleeves only and don’t put a blanket over that arm) and administered saline if needed.  And in between that we watch TV and talk.  With no alarms it’s not an awful way to spend 2 hours.

Of course that’s assuming he’s cooperative.  Sometimes he dozes off, sometimes he sits calmly, sometimes he even looks like he’s enjoying watching TV although we know he doesn’t ever actively seek out that activity.  But most times there comes a point when he’s active, even agitated, and wants out of the chair.  He struggles to lean forward and get up. We hold him back in the chair and calmly tell him he has to stay seated.  We are rewarded with a dirty sideways look.

Lately he’s taken to sloooowly, imperceptibly, sliding down in the chair, and we don’t even realize he’s gotten so low until we are alerted by an alarm sounding that there’s a kink in a line because his elbow is so far bent, or we feel the chair tilting forward due to his legs almost reaching the ground.  Then we have to bend his legs up on the footrest, get a grip under his armpits and hoist him while asking him to Sit Up.  He obliges by pushing with his feet against the footrest and sliding upwards.  We have had to do this anywhere from 1 to 12 times in various sessions.

When the session ends, we mask up again (Riley even knows to mask up at certain times if she’s in the room) and start the process of flushing the lines with saline to send the residual  blood back  into his body.  We do another blood pressure reading, and then Mike disconnects the lines and pulls out the needles, one at a time.  He has to hold a piece of gauze over the access site for many minutes because Michael’s fistula (the newly constructed vein/artery connection) is very strong and pumps the blood quite rapidly and it takes awhile to get the flow to stop.  Early on, when he was severely anemic and his blood was thinner, it took 14-19 minutes to stop the arterial access.  It would spew blood if Mike took the pressure off too soon.  Since he’s been given sufficient amounts of iron and epogen so that his body can make and store iron again (kidneys produce Erythropoietin which is a hormone that helps the body make and store red blood cells– kidneys do a TON of things!) his blood is thicker and it clots faster after the needles come out. It also was too thick and caused the alarms that one weekend so now he has to have a blood thinner administered just before we start the sessions.  See?  Fix one thing, cause another problem.

Then we cover the site with gauze and tape, get 2 more blood pressure readings (one sitting, one standing), take his temperature, and weigh him to see how we did with fluid removal.  And then, a mere 3 to 3-1/2 hours after we have started the process, we’re done. Til the next time.

At this point we either take Michael downstairs to eat a meal (I usually have something prepared to reheat or do the final preparations on a new meal while Mike does the final weighing and temperature reading upstairs) or we go out to eat.  Either place, the boy will EAT.  He eats so much food right after he’s had a dialysis session it’s almost gross.  And not just his usual stand-by favorite foods, but pretty much ANY food: pastas, stews, salads, sandwiches, casseroles, chili, meats of all types, side dishes, on and on.  Sadly this has been the only time he’s significantly hungry and even as early as the next morning his appetite has dropped off again. This is a question we’re working on finding the answer to, because he really needs to be eating more consistently.

Then we go upstairs so Mike can unload the cartridge from the machine and throw it away along with the drained saline bags, the used tape and gauze and syringes, tossing all of the sharp needle ends into the “sharps container” for disposal.  After he’s done with that I wipe the machine down with a 10:1 water/bleach solution and finish the flow sheet report, which Mike then attaches in an email to the dialysis center.

Twice  a week the machine has to be loaded with dialysate which is the cleaning agent that mixes in the machine to clean out his blood before returning it to his body.  That’s done on a non dialysis day and isn’t time consuming, it just needs to be remembered to be done. And once a week the drain line is flushed with bleach to avoid it becoming clogged. And once a month a water sample is pulled to be sent to a lab in Florida for analysis.

It’s a process.  A multi step process that is becoming more routine as we do it, with a reminder to never become too complacent as we do it.  There are so many opportunities for carelessness that could lead to infection.  Hygiene, good sanitation, etc, are all so very important.

So.  That’s WHAT we’re doing.  The bigger question probably is HOW are we doing as we’re doing it.  It’s a tough question.  We’ve run the gamut of emotions as we’ve dealt with it all. Fear has been a huge factor.  Fear when we heard he needed this process to live.  Fear we wouldn’t be able to master it.  Fear that, even though we’ve technically mastered it, we can still screw it up.

And we’ve traveled through a thought process that started with a frightened “can we get this?” epiphanied to a triumphant “okay we got this” and stumbled onto a “okay we’re always going to have to be getting this” …and that last thought is where we are feeling stuck lately. It’s overwhelming to realize This Will Never End and This Is What We’ll Do For The Rest Of His Life.

This is not something he will get through and recover from.  Dialysis will not make him better. What we’re doing is hooking him up to a machine that mimics his kidneys to perform one of the functions of his kidneys, which is removing all of the waste from his blood. And when we take him off the machine, his body immediately begins to deteriorate as the waste immediately begins to build up.   We help make him feel better temporarily until the next session.  A cycle of up and down.  Dialysis will not heal him.  It will not cure him.  It will never end.

I’ve had family members receive treatment for horrible diseases, including cancer.  They receive their prescription from the doctor, and then they endure chemo and radiation and their bodies are poisoned in order to kill the bad cells that have infiltrated their organs. And either the disease wins or the treatment wins.  But when the treatment wins, it really and truly wins. They can be cured.  They can be whole again.

This isn’t that.  There is no winning.  There is no “well after 20 or 50 or 500 treatments your kidneys will work again; this treatment has fixed you.”  No,  kidneys that are broken like Michael’s are broken are broken forever.  And without this treatment, he would just get sicker and sicker.  His blood would  become more and more polluted with no way to remove the waste building up, and eventually his heart would give out.  So by hooking him up 4 times  a week, we’re basically saving his life.

And while that sounds huge and noble, I can’t find any heroism in that.  I find mostly overwhelming panic.  Since we have to do this forever, we have to stay healthy to be here to do this forever.  We can’t have an accident and disappear.  We have to be here. Forever.

So there is a soundtrack of “Don’t” playing in my mind all the time.  Don’t get in a car wreck, Don’t break your wrist, Don’t let Mike’s plane go down, Don’t fall down the stairs, Don’t eat that crap food, don’t , don’t, don’t…. Don’t disrupt the routine we have going because we have to keep saving his life, don’t, don’t, don’t….

A body could go crazy with that drumbeat sounding….

And yet, the world keeps turning.  So I have to turn down the volume on that cacaphony of catastrophe and pay attention to  the rest of the things in our life.  The other kids, holidays and birthdays, sporting events, school activities, the three stinky dogs, flippin’ grocery shopping. I continue to listen to the stories of the little one, to appreciate a pretty day, to find the humor where I can, to try to find a balance in the family. And try not to let the bass notes of lunacy color all of our interactions.

We’ve adamantly refused to not let this Thing We Do be an excuse to not do the other things we need to do. Which is why we still helped her sell 200 boxes of Girl Scout cookies, why meals get made and laundry gets folded, why Mike still makes sure to take her to volunteer at the animal shelter, why we still plant flowers in the yard, why spelling words and volleyball practice and church lessons still happen, even on days when I struggle to keep the darkness from taking over, and work hard to turn a deaf ear to the defeatist voice whispering sour nothings into my ear.  That our dealing with the big parts of Life and Death don’t let us forget that the little parts are important too… on some days, maybe even more important.

But in piecing all of the little parts together, we know that each plan will revolve around “how will that work with Michael’s dialysis schedule.” We can make invitations to activities work; we just sometimes  have to reassess our weekly schedule.  And we’ve realized that all of our outings and vacations will be curtailed more than we’re used to.

Our Old Normal was never really normal.  And looking at what we’re doing now, I  realize our New Normal is ridiculously not.  And never will be.

But we can’t change the hand we’ve been dealt. We just play on.

2016-02-25 18.12.39

 

Posted in Home Life | 10 Comments

Move Over, Romance….

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It was a weird WEIRD Valentine’s Day for me.  We’re not really over the top Valentine’s people.  I don’t expect flowers, I don’t like the boxes of chocolate that are heart shaped (I like those gold rectangle boxes… yeah, YOUknowwhatI’mtalkinabout) and we rarely have had a sitter so we could go out to dinner alone to gaze into each other’s eyes.  It’s almost impossible to eat soup like that, anyway.

 

So Valentine’s Day has become more of a family day.  Small gift bags, home made cards, a sloppily decorated but heartfelt dessert, and dinner out at a low key restaurant with Mike and whichever kids are lying around our house that day.
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Showing the love, losing the romance.  It works for us.
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We’ve been married for over 26 years and I’m pretty sure he knows I love him.  I’m pretty sure he loves me.  So I’m okay not going overboard on the event.  I think if I went all out each year it would be really stressful to come up with romance on demand.  And expensive.
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Because it comes right on the heels of Christmas.  The activities, gift buying, decorating, food prep, organizing, and gift giving involved every Christmas is equal parts fun and stressful.  Oh who am I kidding; it’s 90% stressful.  So I don’t want to be loaded down with potential guilt and disappointment by not hitting the mark on Valentine’s Day so soon after not hitting the mark at Christmas. And I’m pretty sure Mike is more than slightly relieved I feel this way as he’s not one to love going on gift hunts.
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But then this Valentine’s Day rolled around and it fell smack in the “Dialysis Has Taken Over Our Life” mindset we’ve been in since January.  February 14th proper was actually the first day we were on our own to administer the dialysis to Michael in our house. Somehow I’d managed to get a few cute things together to put in Riley’s and Michael’s gift bags, and I’d bought cupcake fixin’s for the dessert.  So the basics were all covered.  Yet here I was, from the moment I woke up, thinking only of  the 287 steps involved with doing the big D. And trying not to think of the 288 things that could go wrong.
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About 12:30 we got into Dialysis Mode.  There is machine prep, and Michael prep, and paperwork prep, and equipment prep, and when you do it right the things overlap so that you can get one thing done and then start another while the first thing is finishing on its own, etc etc.  And of course Riley was getting to see all of this for the first time because all of the other sessions had been done while she was at school.  So there was a bit of conversation about when she could talk and when did she have to wear a mask, and could she go to the bathroom during the session or would that mess up the machine because she knew the plumber had hooked things up in that bathroom.  We got things all squared away and started the treatment.
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And it all went fine. No alarms, no malfunctions, no big seizures, no major irritability.  But even when it’s fine, it’s still just a lot awful.  The potential for excessive bleeding is of course the scariest part.  His little arm with his surgically implanted fistula pumps like a geyser so a good stick is imperative.  And Mike has gotten some really good sticks lately. But even the good sticks mean nothing if Michael flinches or draws back his arm.  So I’ve had to figure out how to position myself to hold his left side, his legs and his right hand all at the same time.
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Removing the needles requires the same positioning.  Not that the needles bother him coming out, but he has to be still so Mike can apply pressure to the right spot or else he’ll lose a lot of blood.  His arterial access tends to bleed a lot on needle removal, and takes at least 8 or 9 minutes to stop flowing.  The venous hole takes 4-5 minutes.  That is a long time to sit in one position holding things juuuuust so.
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And then of course during the 2 hour process that he is dialyzing (the machine cleaning his blood) we have to sit, one on each side of him, holding his hands and arms so he doesn’t reach across with his left hand to pull off his tape (apparently it’s really itchy!) or bend his right arm and mess up the needle placement.  At home we have the luxury of watching TV, but Michael isn’t interested in the TV so he sits there bored.  If we’re lucky he falls asleep.  But even then, when there’s 20-30 minutes left he tends to get really antsy and fidgety and is ready to GO!  Seriously long LONG 20 minutes at the end there.
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But like I said the session went fine.   Mike did a great job with the needles, just like he’s done a great job stepping up for this whole process.  The vacation days he sacrificed to attend the training, the practical but loving way he’s approached the things that need to be done, the care he’s taken to make sure all of the parts are done correctly.  And then watching him suck it up and painstakingly do the most painful parts of the process.  When we realized only one of us would have to learn how to do the needle insertions, he had no problem volunteering to do it.  I felt incredibly guilty that I was so relieved that he was willing to do that.  If I HAD to, I know I would have, but I also know that the early needle sticks were very painful for Michael  and I cried watching him grimace in pain.  I can’t imagine that being blinded by tears would be beneficial to the delicate work involved if I was the one cannulating his arm.
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So that was a big chunk of our Valentine’s Day.  It felt even more unromantic than our usual unromantic Valentine’s Days.  But the more I thought about the day, I realized this holiday was okay without the romance.  Because it was definitely about the love.  The things I was witnessing on this particular Valentine’s Day were probably the biggest displays of love a person can encounter. Self sacrifice, giving, ministering, caring… taking steps to ensure the greatest quality and quantity of life for another human being.  Well, there he was doing it all.
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A big shiny ball of love, married to me.
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Love takes many forms, shows its face in many ways.  I’m glad I looked the right way, to see it the right way.  Happy Valentine’s Day.
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A Fortnight of Ups and Downs

So here we are, done with our first 2 weeks of dialysis for Michael.  The last blog I wrote was about how the first session went.  Relatively well, overall, as far as him being hooked up and dialyzed.  We watched the whole process and when we finished the first day we were completely overwhelmed by the sheer volume of things involved.  At the same time, we were ready to tackle all of the steps because we’d seen that after only his first short session he was happier and hungrier than he had been in months.  This wasn’t so awful, we thought, we can do this, he can do this.

And then we went back for the 2nd session.

The session where he proceeded to have three, count ’em THREE, grand mal seizures during the dialysis process.  When he was hooked up to a machine by 2 large beveled needles that were straining  as his arm was tensing and contracting during the seizures. When said machine was pulling the blood out of his body at a rate that I read somewhere was about 1-1/2 cups per minute.  The seizures probably only lasted about 30 seconds each, but each one of those seconds was an eternity of fear.

Usually when we’re in the “he’s having a seizure” mindset, our first thought is to get him to a place where he won’t bang his head, usually a carpeted area, and then we just wait while he lies on the floor and has the seizure.  We don’t try to stop the seizure or hold his body still or (some people still think this is a thing to do, but it’s not, so don’t do it) keep him from swallowing his tongue.  We just watch it happen. And keep an eye on a clock that it doesn’t go on too long.

In this instance all we could think was “don’t let those needles come out or go any further in” and the three of us held his shoulders, his legs, and both of his arms–most especially the cannulated arm– for the duration of the seizure.  Three times we did this. Three times I panicked and watched his arm twist and stretch, while listening to the machine cry out its own alarmed panic. Three times we hoped that this was the last one.

The next day was our “off day” so we didn’t have a dialysis session and he didn’t have a single seizure.  So back we came on Thursday to try again, hoping the seizure breakthrough was a fluke.  But, no.  This time he had two grand mal seizures during the dialysis session and two after.  The last one being the biggest seizure I’d seen him have in years.

So there we were, upset and worried and sad and frustrated and all of the other things associated with profound disappointment. Because we knew there was no way we could spend each dialysis session dealing with that. Not only was it dangerous for him to be subjected to so many seizures, but the risk of needle infiltration (yes that means the needle piercing through the vein completely) was extremely high.  So something had to be done.

The problem was, we weren’t sure what was causing it.  Our first thought was that his meds were being removed from his blood and left in the filter along with the toxic things that were supposed to be left in there.  But Mike had made a call to the neurologist before we ever started dialysis to ask that specific question:  Did we need to adjust anything about his medication or the schedule to ensure he’d still be protected from seizures?   The doctor had told us, No, everything was good, the medications wouldn’t dialyze out, just keep doing what you’re doing.

But the fact that he was only having seizures during and immediately after dialysis prompted us, as well as the nephrologist, to wonder  “Hmmmm, are we SURE this regimen is okay? Are we SURE the meds aren’t dialyzing out of his system?  Does the neurologist know what he’s talking about?” Luckily the nephrologist agreed to pow-wow with the neurologist on Thursday afternoon.  It’s always better for doctors to talk to doctors if they’re willing.  And so we waited for them to let us know before Friday what the plan was.

Except they didn’t let us know anything.  So we showed up on Friday, dialysis day 4, and were told by the nurse that we needed to call the neurologist.  Huh?  What?  At 8 in the morning?  It had been our experience that doctors’ offices don’t get up with the chickens. Especially not specialists’ offices.  So Mike called and was put on hold and then sent to another person and then to another person and a scant 22 minutes later he got the neurologist on the phone.  Pretty sure he was still home in his pj’s, but whatever.

The neurologist told Mike he was certain the seizure meds Michael was on were not dialyzing out of his system.  That wasn’t how they metabolized, plus he had other patients on those drugs who were on dialysis who were not experiencing breakthrough seizures. He really felt that Michael’s body was reacting to becoming clean and healthy in such a way as to almost be in shock.  And with the way he was wired, it was throwing him into seizures. So to override that seizure activity  we needed to administer a new med just before dialysis that was very strong, very quick acting, and would work just for the duration of the dialysis sessions.

Okay, we were up for that.  Give us the med and let’s get started.

Not so easy.  Apparently this was a controlled substance and therefore couldn’t be called in to a pharmacy.  It required a hard copy prescription, so come on over to Keller and get it. After that, go home because there’s no dialysis today.  Ugh.

And probably the worst part of all of that?  We actually had a bag of the stuff in our pantry. Two years ago when Michael was in the hospital with kidney problems, he went into a bout of uncontrollable seizures that bounced him from the general ward to the ICU in order to get him stabilized.  We were given that magic bag and told to administer this med if that ever happened again.   Luckily his seizures have been so well controlled these past two years that we’d never had to use it.  But the fact that we had the med and could have given it to him that morning if only a doctor had called to tell us the new plan of action was more than a little frustrating.

So home we went, no dialysis for Michael and a half day off of work wasted for Mike.  We spent the weekend letting him eat and drink as much as he wanted because he was significantly hungrier now that he was sporting some new, slightly cleaner blood (we’re starting slowly so even as clean as it is, it’s not as clean as it will be), wiping his runny nose because he had apparently caught the cold that I’d had the week before (sorry ’bout that, kid) and trying not to let our minds wander to the “What if” side of worrying.  But seriously what if this didn’t work?  What if he had an adverse reaction to the new med? What if we couldn’t continue dialysis?  What if… well, it’s a good thing we didn’t think about any of that.

Monday morning Mike administered the new anti convulsant.  As luck would have it, it is a rectal suppository.  Because our lives just aren’t fun enough.  By 7:00 in the morning he was prepped with both his usual arm-numbing cream and the new anti-seizure med, and ready for our 8:00 start time.

For the duration of that session, I was watching him for signs of… everything.  Anything. Whenever we give Michael a drug for the first time, we have to watch for adverse reactions.  For weird side effects.  For efficacy.  At first there was nothing much going on. He was calm, even a little sleepy but not to the point he wasn’t rousable.  No rashes, no fevers, no vomiting, no jitters. But about an hour into the session he had a case of the uncontrollable giggles.  Serious, deep down, can’t catch his breath, hiccup-causing, eye watering, belly laughs.  Funniest thing I’ve ever seen him do.

It reminded me of a few episodes I’ve had in my life where something struck me as funny and made me laugh and laugh and then, just when I thought I was done I’d think about that thing that made me laugh and even if it wasn’t really THAT funny it sent me off into deep. eye watering fits of laughter again.  Weeping laughter.  Punch drunk laughing.

So it was funny, but it was making him a little too animated, so we kind of needed it to stop after a bit.  We tried talking him down, but every time we looked at him, he’d start in laughing again.  We had to avoid all eye contact with him for about 15 minutes until he finally got through it and dozed off.  This happened 2 or 3 times throughout the session.

So that was bizarre.  But we decided that if that is seriously the only side effect we’ll see from that med, then we are good to go! Because he did not have one single seizure during that dialysis session or the next three.  So this definitely took care of the “seizure while dialyzing” issue.

Unfortunately, we are noticing that since he is feeling better and has more energy, he does want to get up and move around. He would rather not sit in this boring old chair with his arm held just like this, for over 3 hours at a time. Which I had mentioned in the last blog would be the ironic side of this– if we fix him to feel better then he’s going to  feel well enough to fight the process that is making him feel better.

The biggest problem this causes is that one of us has to constantly be sitting beside him, holding his cannulated arm and keeping an eye on the other hand to make sure he doesn’t reach over to pick at anything.  Which means only one of us at a time can be trained on anything meaningful.  And that means we’ll be slower to finish all of the training than we’d hoped.  But we’ll get there. Slowly but surely. The tortoise, not the hare.

And speaking of training, Mike has agreed to be the guy working the sharp needles to create a button hole access in Michael’s arm. This means he’ll insert a 15-gauge needle into the same spot in his arm each day for about 8 days creating a thicker, almost tunnel like area.  After the button hole is created, then a blunt needle can be used to cannulate his arm, and the sharp needles won’t be needed anymore (except in some sort of emergency, but we’re not going to think about that).  Since the sharp needles will be obsolete in two weeks, there was no need for both of us to learn how to stick Michael with the big sharp needles.

Mike had successfully removed the 2 needles at the end of the previous 2 dialysis sessions, and he had practiced inserting the needles a few times on the fake arm with great results.  So today when the nurse asked if he was ready to insert one of the needles into Michael for the actual dialysis, he said “SURE!” and inside I thought “Oh NO!  My poor little boy!”

I’d apologize to Mike, except I had the same internal reaction when the dialysis nurse, who’s been doing this for 20 years, said SHE was ready to stick Michael the first day.

Mike ended up doing so well with the arterial needle insertion that she asked if he wanted to do the venous needle insertion.  And he said, “SURE!” and I thought… well, you know….

Michael seemed to wince a bit more, but bled less, with today’s insertions.  And actually we’re thinking that since we got a later start this morning the numbing cream may have worn off and that was probably more to blame than them being bad sticks.  The dialysis nurse praised his success, calling him Super Dad.  But we all knew that already, didn’t we?

We’ll continue next week with the same plan of action, and with hopefully the same results.  Learning this process with all of the blood and tape and gauze and saline and gloves and masks and cartridges and buttons and beepings and paperwork and blood and needles and tubes and tubes and tubes and blood.  Seeing that it will all be worth it because we can see how it is already making Michael feel better… happier and healthier and hungrier.  

(Michael eating his body weight in Mexican food at Anamia’s after dialysis session #6)

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