Above My Pay Grade.....

 While we were driving to Rochester last night, Babygirl pulled up her MyChart to see if there were results in from her second "I-don't-know-what-it's-called/DNA" test. They did one back in March, and drew another a week or so ago.  Again, the purpose of this test appears to be to see if the transplant is shedding more DNA than it should (potentially an early sign of rejection).  The doc sent her a fairly detailed email regarding the fact that neither the last test NOR the current one are normal. He outlined a plan for dealing with it, but since we were going to see him the next day anyway, I didn't focus on that.

I focused on Babygirl.  We've talked about how the test works to the best of my understanding. But since the Doc mentioned the possibility of needing to biopsy the kidney, the conversation was a bit more....specific.  She's had biopsies before, no big deal. But sometimes the results lead to a significant hospital stay, like this:

And the Results....

She is flying to California next week to see her sister.

Right after she returns, I am going on the mission trip.  

Neither of us wants to miss these things.  

So we talked about how much I've tried to just live life, knowing that I might have to be ridiculously flexible with plans and promises.  We can't stop planning trips and vacations and family gatherings and concerts. We can't. We MUSTN'T.  And knowing the fact that things in our lives can change on a dime shouldn't matter.  

It's not just her health. It's everything. It's the unexpected car breakdown, the unanticipated illness, the heretofore unplanned funeral.  I, perhaps more than many people, have a deeply embedded understanding that, well, shit happens. Until now, I've done all or the shifting, the re-planning and the adjusting. This is the first time that she's had to look at the possibility of a drastic, disappointing change in her own plans (her first major solo travel event!).

The best I could do was to say, "Let's wait and see what he says tomorrow." 

Well.

The DNA testing IS abnormal. There is more transplant DNA loose in her system than there should be, but....both of the tests are identical, 3 months apart.  Somewhat abnormal, but as stable as one can determine from 2 tests. This leaves her doc uncertain as to how to proceed, exactly, so the told us that with her morning labs today he had them draw a test for donor-specific antibodies.  A tie-breaker, sort of.  If there are antibodies, she needs a biopsy.  If there are not, they will repeat the UBER/DNA test in 3 months, maybe 2.  Either way, the test results won't be back for about a week, so go ahead and fly to Cali and have a good time.

Hoping sincerely for no antibodies.  With the last transplant, donor-specific antibodies were detected a year after the transplant, It took only 8 years for the kidney succumb to them: A Bolt From the Blue....

After gently telling Babygirl to live in the moment, and not borrow trouble, and to plan and live like nothing is going to happen?  I need to settle down and do my best to take my own advice.  Managing the unmanageable is FAR above my pay grade. 

DeeDee

PS To be honest, I AM better at this than I was.  Doesn't make it suck less, tho. 

PPS Yes, the test knows that she has 2 transplanted kidneys. It's abnormal either way.

Still Sleepy......

 Last year we were neck deep in postoperative concerns and complications, not the least of which was the new kidney's refusal to "wake up." https://kidneedsakidney.blogspot.com/2023/06/waiting-for-kidney-to-wake-up.html 

It was terrifying in the short-term.  It's concerning in the long term.

This kidney does not work as well as the last one did.  Remembering that decline in kidney function is exponential (each small rise in creatinine represents a relatively massive decrease in function), her current creatinine hovers in the 1.0-1.3 range. 1.3 is high for anyone. For someone her age? Moreso. Jorge's kidney was at 0.8-0.9. She got biopsies to assess for rejection at levels that are now "normal." 

However....

She's been stable at this level.  But, to my eye, not as well as she was in 2021, before Jorge's kidney failed.  She fatigues more easily. She can do anything (she goes to the gym pretty regularly for example), but it takes longer for her to recover from a strenuous day.

That being said, she is 1000% better than she was on dialysis. 

I follow a blog written by a young man whose kidney failure journey began in his late teens/early 20's. He has failed 3 (maybe 4?) transplants and is no longer a candidate for further transplantation. He is in his 40's and is coping with the fact that it is "dialysis for life" for him. The thought is, frankly, terrifying. TheKidneyBoy

It's difficult to describe the absolute terror of the week following her transplant, the fear that the kidney would not "wake up." The adjustment to the "new normal." 

I know that borrowing trouble from tomorrow is NOT okay. And I don't do it often. But anniversaries represent sometimes very difficult milestones, and I trip over the scars sometimes.

DeeDee

The Second First Kidneyversary.......

 Facebook Memories are a double-edged sword, sometimes amazing and sometimes just embarassing.  For some reason, June 9 appears to be an exciting date in my life historically. There were dozens of pictures of Citygirl and I living it up at The Hotel Hershey in 2013.  Pictures of a friends wedding in 2012. I was wished "traveling mercies" (to what destination?) in 2015. I was caught making s'mores in 2017. I commented on the state of Christianity in 2019, and on parenting in 2021.  

But 2023?  That was a doozy.

There are dozens of photos if my Field Blends trip with Citygirl. They document quite well how much I (may or may not have) had to drink that day before the trip ended at 3 PM.

What it doesn't document (despite this post: https://kidneedsakidney.blogspot.com/2023/06/here-we-go-again.html) is The Call.  How about 10 minutes into our drive home from Plum Point (north of Watkins Glen), Babygirl let us know that there was a kidney for her, which she received the next day. 

Like the last time it was a deceased donor kidney. Like the last time, the date of the donor's death and the date of the transplant differ by a day. This time we have received no information at all about the donor beyond that they were roughly her age and size. 

Two different people. Two different families.  Both facing the absolutely unimaginable, and both deciding to offer life from death.

I hope I never know what it is to be on that side of the equation.  But I know now, twice, what it is like to be on THIS side.  The gratitude. The fear.  The relief. The recovery. 

It's not enough to say "Thank you." It's not.  But it's all I can do.

So to anyone out there who has ever chosen, during the darkest night of your soul,to donate a loved ones' organs: Thank you. 

Babygirls Mom,

Deedee

Phoney Dependence.....

 Babygirl was walking Geordi LaDog yesterday.  It was rainy and cold, and she was adjusting the music on her phone when 'Lil Ms Speedbump decided that a change in direction was Absolutely Necessary. Babygirl went down.

I can envision the slow-mo horror that followed as her phone skidded across the pavement, and teetered on the brink of a storm drain....and went down with an audible splash.

Sigh.  

It takes quite a lot to upset Babygirl, but she had left for the walk already fed up with her niece and nephew (clumsy was endemic yesterday. Things got broken. Cleanup was grumpy). The outcome of the walk did not improve the tone.  

She bought that fairly pricey phone with her own money two years ago.  Since she knew she'd be stuck in a dialysis chair, she wanted one with a big enough screen to accommodate her visual limitations.  It has all of her favorite apps, and it has the entry to nearly a dozen separate medical portals that enable her to keep up with her prescriptions, doctor visits and test results. Her independence is extraordinarily dependent on this device.

The phone is insured, but not covered for being flung down a manhole.

"I can't afford a new phone!" It's a legitimate concern.  She's good with her money, but recently splurged on concert tickets and is planning a solo trip to California to visit Citygirl. There were understandable tears. 

She knows that I can afford to replace the phone. She simply does not want to ask for a single other thing. She is tired of dependency. She has always had a boundless baseline of tolerance for the bitter rediculousness that life hands her, but we dipped below the reserves yesterday. 

I let her know that I'd help, and rode it out.  An hour or so of recovery and we went out to run errands.  We needed stuff from Walmart and headed there first, and checked out phones there.  I'd already looked at Best Buy so I had an idea of what kind of prices we were looking at.  The Walmart sales guy was extremely enthusiastic about replacing that phone. I had to settle him down an little when I noticed his "enthusiasm" was creating massive anxiety for Babygirl.  That notwithstanding, she got a very decent phone for a very decent price.  We went to Best Buy for a case etc, and although she wasn't spoiled for choice, she came away satisfied.

Fortunately for her, her laptop and Google were of tremendous assistance with recovery of data and access. I haven't seen her this morning yet, but I'm going to guess there will be some residual "stress vibrations."

Yesterday it was, "I never want to go to Walmart again as long as I live."  

I feel that.

DeeDee

After Visit Summary.....

We drove to Rochester yesterday through a lot of rain. A LOT of rain.  It was never bad enough by itself to really be terribly problematic, but when we slammed into a WALL of fog in the dark it got terrifying.  I can't remember the last time my mouth went dry from fear. It took us quite a bit longer to arrive than typical, and it took HOURS for the adrenaline to wear off so I could sleep.

Babygirl's appointment was at 10. The lab opens at 8.  She went in about 8:15, and came out unusually quickly.  "They don't have any orders for me."

Well, that's a first. 

I told her to hang out at the lab. I went upstairs, breezed past the check-in folks and knocked on the office door.  I told them the problem, and they sent a text to the doc asking him to send in some paperwork to the lab ASAP.

As I was re-passing the check-in crew I got flagged over.  As in, Do Not Refuse (please).  I explained the situation and the lovely clerk told me that Babygirl could have had her labs drawn in Nephrology. Well, that's good to know, thank you - but there wouldn't have been any orders no matter where she was sitting.

It took a little while, labs were done, and we went back upstairs.  

By that time, Nephrology had apparently forgotten we were there.  Babygirl finally snagged someone as they were calling in another patient to remind them.  We went in, got seen, got lab reports (all good).  She was scolded for not checking her blood pressure (you HAVE met her right?) and not being religious about home labs.  Her doctor then plainly outlined what worries him the most.

Most of his patients are more "ordinary" transplant patients, with an average risk of complications and rejection.  Babygirl is NOT ordinary.  I mean, I KNOW this, but it's alarming to have her be medically challenging to an extremely confident uber-specialist. 

We've been hiking this highway for a very long time.  I've kind of come to regard Babygirl as some sort of, I don't know, Average Abnormal? Trust this kid to be Above Average when it counts LOL.

Her risk of early rejection is substantially higher than average because she has antibodies to EVERYTHING.  Her doctor wants to do all he can to detect rejection as early as possible.  To that end he has ordered some (pick some random alphabet letters here/DNA) test to detect the possibility of early rejection.  If I understood this correctly, this test measures the percentage of DNA in her system that doesn't belong to HER. If you consider that a kidney is only slightly bigger than your fist, the amount of foreign kidney DNA in her system should be proportional to her own (by weight? Volume?).  If there is more kidney DNA than expected, even if the kidney seems okay by function, they'll look harder for signs of rejection.  Likely via biopsy. 

It only just now crossed my mind to wonder about DNA from the OLD transplant? I'm clearly a bit over my head in this, as always.  I mean, I guess that would be distinctly different from the NEW transplant?

So someone will be contacting us regarding this (doubtless unGODLY expensive) blood test, which will be drawn at home by someone from whateverthehell biotech company invented this bad boy. Yippee.

To summarize: Babygirl has excellent kidney function, great cholesterol, undetectable diabetes.  She has some expected-but-improving hormonal abnormalities common to renal patients that do not require immediate attention. Her liver is slightly irritable, go easy on the Tylenol.  And as always, "Consider an IUD or other long acting birth control, and always use condoms" as one of her medications causes birth defects. Babygirl considers this a genuine non-issue but promises the doc that he'll be the first to know if that changes. 

Lordy.

DeeDee

Two Years of Increasing Fluff.....

 First things first.  12 years ago yesterday a young man's parents had a horrible choice to make.  In his death, the gave life and better health to many people, including Babygirl.  His kidney bought her 10 years of dialysis-free life. And while transplant patients can never truly be considered "healthy," she did SO many things with that time: Mission trips, hiking, traveling, and being the Best Auntie Anyone Ever Had (I mean, except maybe all of her sisters, who are pretty fine Aunties as well LOL). 

Last year this was all very difficult to talk about. The loss of that kidney, the desperate week of touch-and-go, and the subsequent spiral into dialysis?  It was a very different ride than the first time, when despite the shocking fact of Babygirl's kidney failure we had TIME (although to be honest, it really didn't FEEL that way!) to choose her transplant center, dialysis type, etc.  Two years ago it was more like running head-on into a brick wall at 100 mph while simultaneously needing to keep driving at 100 mph.  

Something like that. It beggars description, really. 

At the same time, I went from being the mom of one disabled adult child to the mom of 2 disabled adult children, as Curlygirl began her ongoing descent into the horror that is Long COVID. 

As a result of all of this, much of my life ground to a halt. I had already slowed down on my walking (winter is tough. I'm too old to fall on ice).  When spring came, work, dialysis, traveling with Curlygirl to investigate Long COVID centers and solutions, and helping out with the grandkids took over all of my energy and my coping skills took a nosedive.  When you know that self-care matters, but you can't really care that it matters?  I mean...

I started counseling and journaling (a good go-to when times are tough!). I'm still crawling up out of that hole. 

But one of the ugly consequences of all of this lack of self-care has having to also cope with the fact that my pants don't fit.  There's a lot of fluff going on.  The last time I spent a few years ignoring my own needs I gained 100 pounds.  This time it's "only" 10, and it has stabilized, but I can't, won't, will absolutely NOT buy bigger pants.  

I can't remember the last time I walked to work.  Ella is Very Sad (as only a droopy-faced hound dog can be) about how few walks she is getting.  I walked her yesterday and felt the top of my hamstrings protest like I'd personally invented hills just to torture them.  At least I wasn't winded, but to be fair Ella can't walk fast enough up a hill for that to happen. 

Recognizing that one needs to stay as healthy as possible to delay as long as possible being a burden on one's children, and taking the steps needed to do that are very different things.

So.  One of the oddest things on my bucket list is that I want to climb the bridge in Sydney Harbour. The summit is almost 450 feet above the water and crossing the entire bridge and back takes 3 1/2 hours. Citygirl and Babygirl want to go to Australia but both give a hard NO to climbing that bridge LOL. Citygirl's Beau is absolutely down with it, and he's muscular enough to keep me from dying in the process, so we are hoping to take that trip about this time next year.

Climbing 40 stories twice and staying on my feet for 3.5 hours? Well....that is not a NOW thing.  But it needs to be FUTURE thing, so I'm putting it out to the universe that I'm planning on being able to do it a year from now, preferably in the same size pants I'm wearing now without requiring a lie-down to pull up the zippers. 

DeeDee

Sweet Smelling Sheets.....

 I have, rather late in life, re-acquired the habit of making my bed every morning.  On Saturday or Sunday, I put on fresh everything, so last night I climbed into soft, clean, sweet-smelling sheets.  This is one of the simplest, richest blessings.

All week Facebook has been kindly reminding me of my life 2 years ago this week.  Babygirl was desperately ill, and I was as far from anything like home as I've been in a long time.  She is sitting with me now, looking for furniture for her room.  We are both sipping coffee, and the peace and sense of home is...intense.  The silence that a snowstorm brings surrounds the house.  The grandkids are blessedly asleep. I have a dog at my feet, and Babygirl has one at her side.  (The little Basshole is sleeping upstairs, anything but sweet smelling.  She helped clean up a small spill of THC oil yesterday and has alternatively been unconscious, paranoid-high and/or vomiting &etc. There is a bath in her immediate future once she regains some coordination.)

I have so, so much to be grateful for.  We didn't accidentally kill the dog last night.  I have a home that can be reconfigured to fit in those who need a place.  I have caring family, a fantastic workplace, and everyone I love is NOT in a hospital right now. 

And sweet, clean, warm flannel sheets.  

DeeDee