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…..