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

Hearing the Harps.....

 Like many people, the last few days have had a lot of errands to run, small tasks to manage and gatherings to plan.  We've had a lot of LOUD.  Vigorous car conversation. Loud singing, exclamations of joy and despair, background "All I want for Christmas is YOOOUUUUUUUU" and the like. There's been some pretty loud laughter.

At one point yesterday Bean came out of the bathroom crying: "There's a MONSTER in there." Babygirl's priceless reply? "Well, stop looking in the mirror." 

Many of you are aware that I am a natural introvert.  I need peace and quiet to recharge, one of the reasons I tend to get up early in the morning.  

By noon today I was home, so I made beef stew in the crock-pot for dinner. Then I took a look at our tree, a notable work in progress LOL.  The bin of ornaments has been sitting next to my chair since Thanksgiving, entered into periodically by short people of varied tastes and heights.  The grandkids are occupied upstairs, so I opted for a solitary session of finishing up the tree.

I set my phone to Celtic Harp Music and got to work.

Some music helps bring space into the soul.

We all possess layers and layers of memories.  And there is nothing like a box of ornaments for a good archaeological dig through a lot of years. 

My great-grandmother was a German immigrant, but since the Pickle Ornament was created by American Germans, we never heard of that.  However, no tree was complete without gilded nuts and pinecones, and I have a handful of those cones to remember her by.  

My grandmother loved music, and although the small set of tiny ceramic orchestra ornaments I once had have broken and disappeared, I have replaced them with brass horns and guitars along the way.

My mom loved anything, ANYTHING that would go on a Christmas tree, especially straight silver tinsel hung JUST SO. Any unwanted aging ornaments were donated to us kids to make a festive mess of the upstairs hall with. As her life narrowed with age, her last tree was a tiny thing.  One of the last boxes I opened today yielded me a double handful of tiny glass balls, teddy bears, Santas and rocking horses, the last ornaments she purchased. I don't have a lot of her earlier ones, although I'm betting she glittered up a couple of those pinecones. The ornament Hospice gave her for her last Christmas is there.

My aunt and uncle donated a ton of stuff to me when they closed their store and moved local. Mercifully, I have managed to break most of it. 

My angel was a give from my dad and his wife, an old-fashioned hand-crocheted-and-starched beauty.  Currently Squeaker has given her a candy cane, placed on her shoulder and ready to be thrown javelin-style.

There are the obligatory and much-loved hand made kid ornaments. There is an ornament I hand made in prison to kill time on a visit there to the foster kids' mom. There is one remaining of the Three Little Pigs that Citygirl adored. Lots of coworkers have contributed. There are ornaments from many patients, including one odd little cat-on-a-pillow gifted to me in my first year in practice shortly before the patient died, a heartful of lessons learned.

Some go back to somewhat lonelier seasons when I was away from home and made do with what I had, or celebrated with fellow students and residents. I have one absolutely amazing memory of a full southern Thanksgiving dinner gifted by an attending physician for those of us stuck on call.  And there was one Christmas Eve walking hand in hand with Citygirl's dad through Rockefeller Center and St Patrick's cathedral.

There remains magic in us if we take the time to let the harps play.  My tree is finished, and a different kind of beautiful than it was before I added on.

DeeDee

PS Our recent visit to Rochester was a blessed non-event. All is well. Follow up in MARCH.

Fairy Infestation.....

 Once Upon A Time Citygirl was an only child.  When she was about 4, I bought an Advent Calendar from LL Bean for her. It's lovely, bright colors, with 25 little compartments, about 1.5 x 3 inches. My thought was that I'd put some little trinket in there, and every few days put in a note with an activity to do. For example, the 5th door has a pair of ice skates on it, and I planned to take her ice skating that day.

Best laid plans....

By the time Citygirl opened the third door she was ABSOLUTELY CERTAIN that there was a creature called the Advent Calendar Fairy. Well.  I guess the Calendar Fairy could suggest activities also....

Fast forward a few years.  Add a half-a-dozen kids and some foreign exchange students. Not ONCE did anyone suggest that they had never before heard of such an incredibly specialized fairy.  She came every single night for 25 days while everybody was asleep for a very LONG time.  

I think there might have been 1 Fairy Free year.  And there were a couple of years where the Fairy came only on weekends for visiting grandchildren.

Now, Curlygirl's little Bean is living with us (I assure you that I did not select that nickname. Talk to her Gammy!).  Babygirl pulled out the Calendar and set the Fairy back to work.  Today the Fairy left a Barbie toothbrush, likely to offset the damage she will likely create with the candy she frequently leaves.  Squeaker will get things from the Fairy on the weekends he is here as well.

I'm glad Babygirl holds this as such a special childhood memory that she is willing to go Fairy Shopping. I am glad to see, that like I once did, she suddenly awakens after bedtime to run down and help the Fairy so Bean doesn't wake up to an empty little door.    

I'm incredibly grateful that my oldest unintentionally created what has become two generations of believers in that special little being. When I see parents today doing the Elf on the Shelf, I understand why they do it, (even while I send inappropriate memes to the ones of my kids who do it LOL).  We have such a little time to create magic in the little souls entrusted to us.  

So our house has a Nativity, a Calendar Fairy, and Santa.  I've become a believer in all of them.

DeeDee

PS Because this story isn't sweet enough....

Bean sent me a video of herself talking to the world (like she has her own YouTube channel) about the Fairy. She came down the stairs and around the corner to the Barbie toothbrush.  She was incredibly pleased and excited, and told all of us that she was going to leave the Fairy one of her littlest toys so she could play.

Well. I'm speechess and a little teary-eyed. 

Normal Sick...

 Babygirl is slightly less than 6 months out from the transplant.  At the six-month mark, we can be reasonably confident that all of the things they gave her to keep her from early rejection (you know, all but killing her immune system) are wearing off.  This means that her own immune system should be up and running at its normal? Umm, very sluggish? pace.  In plain English, she's not as likely to get so terribly ill from a minor illness. 

To give a more subtle view of Before Six Months vs After Six Months:

Before Six Months: Don't bother getting vaccinated with anything you need lasting immunity from (COVID, shingles, tetanus) because her immune system is unlikely to remember that it ever happened. Maybe hold off on the Flu shot as well. 

About 3 weeks ago we all had a cold.  Of the four of us (did I mention Curlygirl and her daughter Bean live here now?) I got the sickest, missed a day of work, and was generally miserable. I still have the cough.

I've come to call these episodes the "Grandma Flu" since it seems something like this happens whenever we spend time with the Grands, especially the littles. 

Four or five days ago, Bean got cold symptoms. Then Curlygirl. Then Babygirl. By Wednesday she was miserable: Cough, body aches, endless snot, chills. 

Yesterday the fever came. Fever strikes fear into the hearts of those caring for immune suppressed patients. While some diseases naturally cause fevers, colds typically do not unless the patient isn't fighting hard enough by other means. Fever means you MUST be evaluated. However....fever notwithstanding, this is probably a cold. Of course, it could also be Influenza, and knowing THAT offers us an antiviral for treatment. There is a rapid test for Flu. We already did a rapid COVID test, which was negative.

Do we need the ER?  I think not. I scheduled an appointment at the walk in, bugged out of work (with the work computer, of course. I can tap into the secure network there).  We waited about 2 hours, and the nurse who took us back immediately sized up the situation. She came back with the Flu swab, a strep throat swab, a viral panel swab and a COVID swab and had it all ready before the provider arrived, about another half hour later.

He was clearly harried. We saw the ambulance getting loaded up while we were waiting.  I know how badly that kind of sick ruins the day of the walk in provider. But still.

"Why are you here with just an ordinary cold? I mean, I know you had a transplant, but you should call your regular doctor and the nephrologist!" 

Dude. We made those calls. Nephrology called us back while we were waiting for him and told us what to do about whatever of the various diagnoses they came up with, and what over-the-counter stuff was safe for her.

I let him wallow around for a few minutes. Babygirl got so intimidated that when he asked her if she had any symptoms in addition to the fever she said, "No." Lordy.  I mean, not counting the cough, chills, body aches and the six gallons of snot she blew out of her head right in front of you, no, nothing.

I did my best to explain the Before Six Months vs After Six Months, as well as the overall concept of "immunocompromised." He had no way of knowing that about 2 years ago she went from "a little sick" to "almost didn't make it" in just a couple of days, but I filled him in.

To his credit, he took a step back, visibly reset his brain, and started over.

On exam her lungs sounded crappy, apparently. He didn't want to expose her to unnecessary radiation, explaining that bronchitis or pneumonia are going to get the same treatment. He asked if we had inhalers? A nebulizer? And he left the room to research which medications would be safe for her kidney. 

You should be proud of me. I got through the whole thing without saying a single ducking bad word. I never even let him know what I do for a living. 

On our way out, one of the receptionists hollered, "Have a good evening, Dr D!" so I guess I didn't actually need to tell him.

We stopped for dinner, and went back for the medications. She's doing a bit better today, thank you.

DeeDee

PS I ran into someone today who was working the ER yesterday. She said that at dinnertime there were 30 people in the waiting room, 20 people in the ER waiting for beds for admission, no empty rooms and overflow was full.  Walk in for the win!