Three Nights, No Kidneys, and Finally Home 💚
Last week, we left off with Mom getting up and walking less than 24 hours after having both of her kidneys removed.
That sounded like a pretty good place to end the story.
What we didn’t know yet was just how much story the next three days were going to give us.
The First Night Was the Hardest
Mom has since described waking up from anesthesia as feeling like her entire abdomen was one huge cramp that simply wouldn’t let go.
She told our family she had never been in so much pain in her life.
Eventually they got the pain under control, but Mom was pretty clear about one thing: she wasn’t going anywhere until they could keep it that way.
What “Robotic” Surgery Actually Looked Like
One thing we hadn’t really thought about before surgery was how they were actually going to get Mom’s kidneys out.
Her surgeon told us each kidney was about the size of a peewee football.
Most of the incisions were surprisingly small because the surgery was done robotically. The larger incision was about four or five inches long on the lower right side of her abdomen, along her old C-section scar. As it heals, it should eventually blend back into the scar that was already there.
So how do you get two peewee-football-sized kidneys through an incision that small?They cut the kidneys into smaller pieces inside her body so they could remove them without having to make a large open incision. Somehow “robotic surgery” sounded a whole lot less dramatic before we actually saw what it involved. 😂
Remember that camper van parking problem Dad spent days trying to solve?
When he couldn’t get a clear answer, he did what people do when they need real-world advice — he asked Facebook. 😂
Dad posted in Camping in the Carolinas and RVing with Dogs, and people started chiming in with suggestions, backup plans and even offers of places we could park.
In the end, we found a spot in the MRI parking area about a minute from the hospital entrance.
Which turned out to be a very good thing.
Dad stayed in the room with Mom Thursday night. Kameron and I slept in the van.
Turns out the van was about to earn its keep. 😂
By Friday morning, Mom was doing better. She got up and walked, which was an important part of her recovery and one of the things she needed to do before she could eventually go home.
There were still plenty of little victories ahead.
Night Two: Nobody Slept
Friday into Saturday was a different kind of rough.
Mom’s pain wasn’t nearly as bad, but the swelling and bloating had gotten worse. She was retaining fluid, and fluid was leaking pretty heavily from her abdominal incision sites.
Dad stayed in the room again and says he “slept.”
We’re using that word very loosely.
Between nurses coming in, blood draws, an X-ray, dealing with the leaking incisions and Mom getting restless and deciding she wanted to walk, there wasn’t much sleeping happening.
Meanwhile, Kameron and I headed back to the van around 9 that night for round two.
At some point during all of this, Mom started referring to her walks around the hospital floor as “walking the cell block.”
Honestly, we were just happy she wanted to walk the cell block. 😂
Waiting for Dialysis
Saturday morning, Mom was supposed to go to dialysis at 6:00 AM.
Six came and went.
Then seven.
Then eight.
Then nine.
By 10:45 AM, she finally left the room.
That wait was probably one of the more frustrating parts of the weekend. Mom was visibly retaining fluid, and we suspected some of that extra fluid was contributing to the leaking from her incisions. Dialysis was one of the things that could help manage the excess fluid.
Her treatment finally started around 11:08 AM and was scheduled for about two and a half hours.
And this is where hospital life gets weirdly normal.
In the middle of dialysis, Mom texted Dad:
“Are there any Uncrustables left?”
She wanted chocolate.
A little while later:
“I’m ready to go home.”
She was still leaking enough that she needed more of the big absorbent pads over her abdomen, along with tape and a clean gown.
Dad changed her bed, found the tape, got the gown ready…
…and then had to ask Mom what an ABD pad actually was.
Mom explained that they were the big thick pads being taped over her abdomen.
So Dad’s nursing education had officially begun. 😂
At another point Mom described the situation a little less medically:
“I am leaking like a stuffed pig.”
There are probably more dignified ways to document recovery from bilateral nephrectomy.
Mom apparently wasn’t interested in any of them.
Everybody Starts Heading Home
By Saturday, the little family camp we’d built at the hospital was beginning to break apart.
Kameron left that morning to head back to Myrtle Beach because he had to work that night.
I stayed until Mom went to dialysis, then headed back toward Kings Mountain. From there I was going to Johnson City to see Clay at Milligan University before eventually making my way back to Myrtle Beach for school.
That’s another strange thing about a week like this.
For a few days, it feels like the entire world has stopped.
Then gradually everyone has to start returning to work, school, basketball and regular life.
Mom and Dad weren’t quite there yet.
Signs Mom Was Coming Back
Saturday gave us a few signs that Mom was beginning to feel more like herself.
She was hungry.
At first Dad asked what she wanted for lunch and got:
“I don’t know. Just pick something. I don’t have the energy to think.”
Then he sent her the menu.
Suddenly she had enough energy to make some decisions. 😂
Rice Krispies. Milk. Grapes. An apple.
Later that evening, she was sitting upright in her hospital chair, glasses on, phone in hand…
making Dad a grocery list.
That’s when we knew management might be resuming operations. 😂
There was another funny moment with her work friends.
Mom is a nurse, and apparently even from a hospital bed she couldn’t turn that part of her brain off. During her stay at Wake Baptist, she’d noticed a few processes they were doing differently that she thought might be worth trying at her own hospital.
So less than a day after having both kidneys removed, she was already messaging her coworkers with ideas she didn’t want to forget.
Her boss Keisha responded:
“Girl stop working and rest 😂”
Mom’s defense?
She had to send it before she forgot.
Apparently removing both kidneys is still not enough to make Mom completely clock out. 😂
Sunday
Sunday morning felt different.
Mom felt much better.
The leaking from her abdomen was still probably her biggest annoyance, but compared with where she’d been Thursday night, the difference was obvious.
The original plan was dialysis and then, hopefully, discharge.
Instead, we got even better news.
No dialysis that day.
Mom was discharged.
There was one final obstacle between her and freedom: waiting for the hospital pharmacy to bring her medications.
She changed out of the hospital gown and into real clothes and sat in that chair waiting.
And waiting.
After everything we’d been through since Thursday morning, getting held hostage by the pharmacy for a little while longer almost seemed appropriate. 😂
Eventually, though, we walked out.
Home
Sunday evening, Mom was finally back where she’d been saying she wanted to be since almost the moment she woke up from surgery:
her own quiet house and her own bed.
Dad got all of her medications organized.
They changed the dressing over her abdomen.
And then Mom went outside and walked around the neighborhood.
Nothing dramatic.
Just a walk.
But four days earlier she’d walked into a hospital with two kidneys that had grown so large from PKD that they needed to be removed.
She came home with none.
So walking around her own neighborhood felt pretty significant.
Being home didn’t mean recovery suddenly became easy.
Mom’s biggest problem that first evening was still the leaking from her abdomen. Her back was hurting too, and she just couldn’t seem to find a comfortable position.
She’d lie down, sit up, move to another spot, get up again—anything to try to get comfortable.
Unfortunately, all that moving around seemed to make the leaking worse.
So Sunday night there were no nurses coming through the door.
No middle-of-the-night blood draws.
No X-rays.
No hospital couch for Dad to “sleep” on.
Instead, Dad “slept” on our couch at home.
Mom was leaking badly enough that about every hour or so, Dad was back up changing the dressing over her abdomen.
So maybe sleeping still isn’t quite the right word. 😂
But this time, they were home.
Mom was home. 💚
Monday: Learning Dialysis
Monday morning brought the next part of Mom’s new normal: her first outpatient dialysis treatment at Fresenius.
And it was a learning experience.
The machine alarmed over and over because of arterial pressure issues, and Mom’s blood pressure kept running low.
They were able to clean her blood, but they couldn’t remove much of the extra fluid.
They weren't able to take much fluid off, so her weight was essentially unchanged by the end of treatment.
At first, that sounds like a rough first day. And honestly, it was.
But we’re learning that these first couple of dialysis treatments are exactly that — a learning process.
They’re figuring out Mom’s body. What blood pressure is actually “low” for her. How much fluid she can tolerate having removed. How she feels during treatment and afterward.
And Mom is learning all of those things right along with them.
She came home exhausted.
But Monday gave everybody information they could use Tuesday.
Tuesday Was a Different Story
Tuesday’s treatment went much smoother.
Mom had left dialysis Monday weighing 146.8 pounds. When she came back Tuesday morning — after eating and drinking in between — she weighed 146.4.
She’s still leaking quite a bit of fluid from her abdomen, so apparently she managed to lose a little weight between treatments instead of gaining it back.
More importantly, her blood pressure stayed good throughout Tuesday’s treatment without them needing medication to support it.
The machine was a whole lot quieter, too. 😂
And this time they were able to remove 1.0 liter of fluid.
Nobody has this completely figured out yet.
But that’s kind of what these first couple of days are for. 💚
And Then There’s Home Dialysis
Tuesday also gave us our first real look at what comes next.
Mom and Dad are going to train for home hemodialysis, and that training officially starts Thursday.
There’s a whole curriculum on the iPad that they’ll work through over the next five weeks.
Dad has to learn how to operate the dialysis machine.
He has to learn how to troubleshoot it when something goes wrong.
And then there’s the little detail he’s probably trying not to think about too much.
He has to learn how to stick Mom with those giant dialysis needles. Twice. In the right places. 😳
Nothing says marriage quite like, “Here, learn how to put these two giant needles in my arm.” 😂
Hopefully five weeks from now, all of this will feel a lot less intimidating than it does right now.
And hopefully we won’t need to do it at home for very long.
Because dialysis has never been the finish line. Transplant is.
One Week Later
October 1st will be one week since Mom checked into the hospital at 5:00 in the morning to have both of her kidneys removed.
In seven days, she has gone from major surgery, to learning how to walk those hospital halls again, to her first dialysis treatment without kidneys, to finally getting home and beginning outpatient dialysis.
There have been painful nights, leaking incisions, very little sleep, a whole lot of dressing changes and more medical supplies showing up at the house than any of us ever expected to be excited about.
But there have also been neighborhood walks.
There have been jokes.
There have been increasingly specific grocery requests.
Dad’s current list includes low-sodium chicken soup, Rice Krispies, milk, chocolate ice cream and applesauce. 😂
So yeah.
Mom is definitely still Mom.
A week ago, getting both kidneys removed felt like the enormous thing sitting in front of us.
Now it’s behind us.
There’s still a lot ahead — healing, dialysis, five weeks of training and eventually transplant.
But we’re one week closer.
And for now, that’s enough. 💚