Kidney Status: It’s Getting Real

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You know, it’s been so long since I blogged, and I’ve had so many conversations of varying length and depth with so many people… I don’t know what anyone knows anymore.  So I’ll just pretend nobody knows much of anything and get everyone up to speed with where we are in the Kidney Saga.

I think everyone knows we’ve been doing dialysis treatments at home on Michael.  We’re actually closing in on TWO YEARS of doing this.  January 11th is our General Dialysis Start Date Anniversary, and February 14th is our Dialysis At Home Start Date Anniversary.  We’ve had very few complications as we’ve done these treatments which is actually pretty amazing considering what we’re doing.

I’m not sure everyone understands that 4 times a week, we’re sticking 2 large-gauge needles into Michael’s arm, taping them down and watching a machine pull the blood from his body, clean it through a cartridge and dialysate solution, and return it back to his body.  There is no port to attach things to.

A surgeon did create a large fistula in his arm, where he basically connected an artery to a vein and inserted a mechanism that pumps blood at a higher rate to make this large, almost ropy, vein in his upper arm for us to insert the needles into.  But it’s still just his arm.  Still his flesh.  And he flinches almost every time, no matter how much or how long we apply the numbing cream.

And depending on the type of needles we use, we have to be careful that he doesn’t bend his arm too far lest he puncture himself internally, an occurrence known in the dialysis world as “infiltration”… we’ve had that happen twice and his upper arm swelled up with a pocket of blood and pain.  Ugh.  But we’ve learned what happened each of those times and have been super, super careful to avoid that happening again.

You’d think with the pain of the needles and the 2 infiltration moments and the boredom, Michael would resist treatment.  But surprisingly he goes into the game room and climbs into the chair each time it’s time for a treatment without fuss or hesitation.  Even knowing the flinch is coming.  The only thing we can discern from this is that he knows that it makes him feel better.  That his post-dialysis moments are the happiest, hungriest, most active moments he has each week.  He laughs, he eats, he is animated.  And he stays that way for a few hours, with things incrementally slowing down over the 48 hours until he’s tired again and it’s time for another treatment.

So that’s where we are with dialysis.

Of course, we’d like him to be happy and hungry and animated for more hours than just the post-dialysis ones.  Which is why we’ve been pursuing the plan to get him a new kidney through a transplant.  UT Southwestern has approved him to be on their transplant list and I am in the process of being tested to see if I’m a match to donate one of my kidneys.

Let me just side note here that being tested to be a kidney donor is a bit of a beat down.  I went to the lab to have blood drawn and to pee in a cup.  Those blood results told me I’m a blood match for Michael so I was asked to return for more blood work.  One of those blood levels was “borderline” so I returned to have a glucose tolerance test done.  I passed that and had to do a  24-hour urine collection.  I failed that and had to redo it.  (you have to understand how disheartening it is for a pretty much Straight A student to be told I’m failing these tests and must retake them!)  The 2nd collection was a winner and now I’ve been cleared to go down to UTSW and have 14 appointments over 2 days with all sorts of people, both for consultations and actual procedures.  They will check my kidneys and my heart, as well as ask about my diet, my psyche, and my support system.

All of this to find out if I’m a good candidate to give up a kidney and survive the surgery.  I started the process about 2 months ago and will finish by Thanksgiving.  I’ll keep you posted on how all of that goes.  But remember, if you’re ever thinking you want to donate a kidney, there are a lot of steps to the process, a lot of visits to the lab!

But meanwhile, after a few conversations with different doctors, the decision has been made to remove Michael’s existing kidneys, via a procedure known as a nephrectomy.  We had been told from the very beginning, when we first started pursuing the transplant process, that they would require his old kidneys be removed.  For a brief moment, one doctor thought we could avoid this step, but he turned out to be Dr. Falsehope and we’re back to having to have them removed.

These kidneys of his are full of cysts, which create 2 potentially negative things. One, they could become malignant in the future, and two, the cysts inside make his kidneys markedly larger than normal kidneys and they are pressing on his other organs.  Removing them might make him eat more if they are putting pressure on his stomach, and they will give the newly transplanted kidney the space it needs.

I had thought originally that they could do both surgeries at the same time–take out the old, put in the new.  But apparently with the risk of complications from any surgery, they want to do them one at a time.  Remove the old ones, let him heal, make sure he has no infections, get strong again, then do the transplant.  Obviously they want as few things as possible involved to risk the body rejecting the new organ when the transplant occurs.

So that’s a 6 week process from start to finish.  And the start date is December 8th, as that’s when the nephrectomy is scheduled.  By that time my testing will be done and we’ll know if I’m a good candidate for donation.  After his 6 weeks are up and he’s healed and strong, we’ll do the tissue matching to see if I’m a viable donor for him.  Then within a week after that, we’ll schedule the transplant.

But did you hear that?  I will have gone through all the testing and still, at zero hour, find out we’re not a tissue match.  They have to wait til the week before because bodies can change so rapidly that the antigens might not match.   Even if I’m not a match, he’s on the general donor list, and is accruing bonus points for being on dialysis!  So we’re hopeful that a transplant will happen sooner than later.

Our concern is how much will the dialysis sessions change once his old kidneys are removed.  Right now the old kidneys are still allowing his body to produce some urine so liquid is being removed from his body naturally.  The dialysis machine removes waste from his blood and also removes excess fluid based on the numbers we input.  We know what is dry weight is and we weigh him before dialysis.  We program the machine to remove the fluid that is considered excess.

Once his kidneys are removed, he will stop urinating and we’ll have to remove even more fluid.  We’ll have to monitor more closely how much he drinks.  And watch for signs of fluid retention.  Only a certain amount of fluid per hour can be removed safely, so odds are we’ll be on the machine for longer periods of time.  If it’s just for those 6 weeks, that’s fairly manageable.  If I’m not a match and we’re waiting for an indefinite period of time for a donor kidney, well… I’m not sure how the new dialysis sessions will go.  We’re hopeful we can keep a handle on things and get the same results we’ve been getting the past 2 years with dialysis.  That’s twice I’ve said Hopeful… and you know, hopeful is as hopeful does… which isn’t much.

But that’s where we are.  Some answers, some questions, some knowns, some unknowns.  Pretty standard fare in our world.

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Sometimes They Do Say Yes

We got the call yesterday.

“It’s UT Southwest, It’s UT Southwest! Answer it!” Riley screamed, running down the stairs after seeing the Caller ID post flash on the TV screen.  I didn’t correct her pronunciation because Mike had already picked up the phone and was listening to our transplant case coordinator telling him the details of the transplant committee meeting. We had gotten a call the previous Tuesday telling us that the main doctor who was to have presented Michael’s case to the committee that day had been called away on an emergency, so the presentation had been postponed to this week.  Part of me wondered if this was yet again another “The news is we have actually no news” phone calls.

But he was still listening, mmm-hmmmm’ing, nodding… and after a few moments he turned to give us a Thumbs Up while still continuing to listen.   Riley broke into a big smile.  But again, part of me hesitated… and wondered if the Thumbs Up was THE Thumbs Up or just a “it’s not a Yes but it’s not a No so we’re still in this” kind of thumbs up.

Those of you who know me will not be surprised at my reticence. Life has not always been kind to us in moments like this, Baylor-Who-Rejected-Us had not been kind to us in an exact moment like this,  and my guard is always up… my inner Eeyore sighing and bemoaning.

But it turned out that it really WAS a They Said Yes Thumbs Up.  Michael was officially being put on the Kidney Transplant List.  They were saying Yes to Michael.  They were seeing past the disabilities, the low weight, the seizures, and his being non verbal.  Seeing him as we see him.  As him being deserving of a transplant.  And of us being capable of helping him through the process.

There is still one caveat… because, life.  At this point he’s a Status 7 patient.  That means he has an outlying medical concern that must be addressed before he can officially receive the transplant.  But since it’s one that they know will be taken care of, he can stay on the list and work his way up the ladder of waiting.

To change him from a Status 7 to a Status 1, he must have a nephrectomy  to remove his existing kidneys. Apparently in a standard transplant, they insert the donated kidney and hook it up into the existing plumbing, while leaving the 2 original kidneys in place. They just tuck the new kidney into the front of the abdomen, and don’t mess with the back side of the body where the original kidneys are.  They do this because 1) it’s less complicated in terms of invasiveness and recovery time and 2) sometimes the existing kidneys are semi functional so they are left to be helper kidneys in whatever capacity they can be.

Michael’s kidneys are full of benign cysts.  The concern is that down the road those kidneys could become malignant.  Bodies being what they are, any compromised areas are more susceptible to cancer, especially when introduced to anti-rejection medications. So they’d like us to have those kidneys removed, and then we’ll do the transplant after he fully recovers from that surgery.

Setting up this time frame will be kind of tricky.  While his kidneys are not removing waste from his body and are relying on the dialysis machine for that, they are still producing some urine which helps keep him from being bloated and retaining fluids. Once we remove his existing kidneys, we’ll have to adjust the machine to remove all of the excess fluid in his system.  Odds are we’ll be doing longer and more frequent dialysis sessions in order to accomplish this.

And again, while we are very proficient at performing dialysis, it is not something we look forward to doing and not something we relish doing even more of.  Our goal is to get him a functioning kidney and come off of dialysis.  But it looks as though part of the interim time might be fairly dialysis-intensive.

We know we have some time to get this done, because the wait time for a “cadaver kidney” (their term) is either 3-5 years, or 4-7 years, depending on which publication you read.  None of that is a feel good kind of read.   The wait time for a living donor is non existent.  You set your own timetable.  But there are a lot of steps for the prospective donor to go through before being considered a match.

This morning I got online and filled out my application to be a kidney donor for Michael. I’d have done it right after the phone call yesterday, but we were on our way out the door for a Rangers game (they won 10-4, woo hoo) and I knew that 18 hours wasn’t going to matter in the grand scheme of all of this.

I answered questions about my height, weight, medical history, and personal habits.  I was a No to all of the “bad habits” questions.  Clean living has its advantages sometimes, even if you don’t have as many great stories to tell.  But maybe this will be my great story to tell.  I’d like to hope it starts with me and ends with me.

Be quiet, inner Eeyore.

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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.

 

Posted in Home Life | 1 Comment

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.

 

Posted in Home Life | 2 Comments

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

 

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