Apparently learning home dialysis comes with homework.
A lot of homework. 😂
Dad has a stack of training books that looks about a foot thick, an iPad full of more training, and several weeks of learning ahead of him.
Last Thursday was his first real hands-on day. He learned how to set up the dialysis machine, test the water for chloramines, check the thrill and bruit in Mom's fistula, monitor her blood pressure and get everything ready for treatment.
And then dialysis reminded us that reading the instructions and actually doing this are two very different things.
When the Machine Isn't the Hard Part
Mom's first needle sticks Thursday went fine, and treatment started normally.
For about five or ten minutes.
Then the venous access infiltrated.
The team stopped that line, left it in place, and placed another needle higher in Mom's fistula. After that, things settled down. Mom was comfortable, Dad was reading his homework and checking blood pressures, and the machine quietly did its thing.
For a while, dialysis was almost boring.
We're quickly learning that boring dialysis is wonderful dialysis.
But with about an hour left, the second venous access started infiltrating too. At that point, Mom's arm had been through enough. They returned her blood and ended treatment early.
She still got almost two hours of treatment and some fluid removed. Her blood pressure stayed good. The arterial side worked the entire time.
It wasn't a perfect first day of training, but Dad probably learned more from things not going perfectly than he would have if everything had behaved.
Five weeks of training suddenly doesn't sound very long. 😂
Friday reinforced that lesson.
Mom was connected for dialysis, but her fistula wasn't cooperating again. Treatment lasted only about ten minutes before they stopped.
Yesterday Dad started learning how to run a dialysis machine.
Friday we learned that sometimes the machine isn't the hard part.
Sometimes You Need Someone Who Knows What Happens Next
When things started going sideways with Mom's fistula, Dad and Mom didn't really know what the next step was supposed to be.
Aunt Kaye did.
She stepped in and handled business.
She helped coordinate with Mom's nephrologist, Dr. Nigbor, and Dr. Bast's office to get Mom seen Friday afternoon, then helped make sure she had a dialysis chair Saturday to make up the treatment she'd missed.
And there are a few people who deserve a shout-out here too. Dr. Nigbor and Dr. Bast's office made things happen on a Friday afternoon, and the clinic teams worked together to find Mom a chair for Saturday.
Sometimes having somebody in your corner who knows what needs to happen next—and a whole group of people willing to make it happen—makes all the difference. 💚
Dr. Bast took another look at Mom's fistula and performed a second angioplasty. Before she left, he even drew a map on her arm showing the area he wanted the dialysis team to use.
Dad used his finger for measuring because apparently this five-week home-dialysis course includes its own system of measurement. 😂
Soccer First. Dialysis Second.
Saturday may have been the best example yet of what life on dialysis actually looks like.
Mom and Dad went to Lili's soccer game.
Then they went to dialysis.
Because Friday's treatment didn't happen, Saturday became a make-up day. Mom was on the regular dialysis floor, where Dad couldn't stay with her, so he waited outside while she texted him updates.
There was another needle issue at the beginning, but the team corrected it and Mom completed the full four-hour treatment.
Late in treatment her blood pressure dropped into the 80s over the 50s. The team treated it, waited, and got it back up.
Then she came home.
And that's something we're beginning to understand about dialysis that probably isn't obvious until you're living it.
The biggest disruption isn't always what happens during dialysis. It's how much of your life dialysis requires.
Right now, while they're training for home hemodialysis, Mom and Dad are at the clinic four days a week. Treatment itself takes hours. Then there's setup, travel, appointments, recovery and all the other things that come with it.
You can still go to a soccer game.
You can still go grocery shopping.
You can still make plans and have a normal Saturday.
You just start building all of those things around dialysis.
Apparently Dad Really Does Have to Learn All of This
By Monday, things were looking much better.
After all the trouble with Mom's fistula and another trip to Dr. Bast for angioplasty, the team is still handling her needle sticks for now. A different staff member cannulated her Monday, and thankfully both accesses cooperated for the entire treatment.
Three hours.
No machine alarms.
No access problems.
No blood-pressure problems.
And 1.5 liters of fluid removed.
Boring. Beautiful. Dialysis. 😂
Dad got to do a lot more too. He prepared the lines, entered information into the machine, connected Mom, monitored her treatment, rinsed her blood back when it was finished and pulled her needles.
Tuesday he was supposed to take another step and set up the machine himself from the beginning.
He did.
Then there was a problem with the first venous stick. The team kept the good arterial access, placed another needle and switched the lines around.
That process took long enough that Dad had to start over and set up the dialysis machine again.
Apparently the first setup was just practice. 😂
Once everything was running, Mom did well. Her blood pressure stayed mostly in the 90s. Dad handled the treatment, and when the dialysate expired about 30 minutes before the planned finish, he rinsed Mom's blood back and pulled her needles.
She finished with 2 hours and 38 minutes of treatment and 1.4 liters of fluid removed.
Her standing blood pressure was low afterward, so they waited a few minutes before leaving. It came back up on its own without needing saline.
Another treatment completed.
Another lesson learned.
Another little step toward Dad being able to do this at home.
They're Learning Mom, Too
This week definitely hasn't been smooth.
But we're also learning that "smooth" probably isn't a realistic expectation when you're brand-new to dialysis and everyone is still figuring out what works best for Mom.
What we've appreciated is that when something hasn't worked, the team hasn't just kept doing the same thing.
They've adjusted.
Aunt Kaye and Paige in particular have been paying attention to what Mom needs and helping make those adjustments along the way.
Plans have changed. People have communicated. Different approaches have been tried.
Dad is learning dialysis.
And the dialysis team is learning Mom.
It feels like we're moving forward. 💚
And Mom Is Starting to Look More Like Mom
Somewhere in the middle of all the needles, machines, appointments and Dad's giant pile of homework, something else started happening too.
Mom started looking a little more like Mom.
Her energy has noticeably improved over the last few days.
Sleep is still hit or miss. She had one really good night and then another rough one because her back still bothers her when she's lying down. During the day and sitting up, it doesn't really bother her.
And her abdominal incision is still leaking.
A lot.
Mom talked with Dr. Walker about that this week. Thankfully, he isn't concerned about the drainage right now and said to give it another couple of weeks. He told her what changes to watch for and when to call him.
The pathology from Mom's kidneys isn't back yet either. Dr. Walker said he isn't expecting any surprises beyond the PKD we already know about, and he'll reach out when the results come back.
He also plans to move Mom's November 12 follow-up appointment up by a couple of weeks.
We're definitely interested in seeing that new date on the calendar. 💚
Wednesday also brought Mom's first regular PCP visit since surgery.
And it was wonderfully uneventful.
Dr. Vacalis updated her medications and went through how she's doing overall. There was some concern about her iron and hemoglobin levels, but the dialysis team was already on it. Beginning with her next treatment, they'll start giving her iron along with her returned blood.
He also prescribed something to help her sleep.
After the last couple of weeks, we'll happily take an appointment where nobody needs to urgently fix anything. 😂
Surviving Is Important. So Is Living.
Two weeks ago, Mom came home without kidneys.
Since then, we've watched dialysis do exactly what it's supposed to do.
It's keeping her going.
We're incredibly grateful for that.
This week she went to a soccer game. Her energy started coming back. Dad learned how to run more of her dialysis treatment. We had some really good days, some frustrating ones, and a couple that somehow managed to be both.
We're living life.
But we're also learning firsthand just how much of that life has to bend around dialysis.
That's part of why we keep talking about living donation.
A transplant isn't simply about getting Mom off a dialysis machine.
It's about time.
It's about freedom.
It's about being able to make plans without first checking where dialysis fits.
It's about getting back pieces of a lifestyle that kidney failure slowly takes away.
You can survive on dialysis. Mom is showing us that every day.
Our goal is bigger than surviving.
We're trying to get Mom to the living-donor transplant that can give her the opportunity to really live again.
For now?
Heal. Learn. Dialyze. Live life. Repeat.
And maybe—just maybe—we'll take a few more boring days next week. 😂💚