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