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!

Giving All Gratitude....

 It's barely noon, but it has been BUSY here.  Due to work and visitation schedules, we have 5 kids 4-13 here sans parents, some since Tuesday night, and some since 7:30 this morning. I've been up since 6:30 preparing a meal meant to be served at 12:30.  Since we blew a circuit breaker mid-turkey roast, there might be some delay.  All the kids have been helpful to some degree.  One grandson learned about piecrust. A granddaughter learned the value of a final recipe check: Pumpkin pie with no sugar would not have been a hit. It took two grandkids 20 minutes to search out the spices that were needed for that pie.  

I didn't peel any potatoes.  Babygirl didn't need to peel any apples.  For our sanity, they all went outdoors and scootered up and down the street.  

I'm grateful.  There are a large number of people locally who are without power due to a storm 2 days ago.  There are friends going through their first Thanksgiving without loved ones (Ana's kidney donor's family among them).  There are families who cannot get together. We are not all here, but we are enough. 

DeeDee

 

Medusa Under the Front Seat....

 When was the last time you had a dream that you remembered?

It's been years for me, until last night. 

I'm recovering from a cold, and I've been waking up coughing almost every night for almost a week.  To be honest, I had 2 glasses of wine. I went to bed and crashed at about 7:30 PM.

Then: The Dream.

It started with me looking into a vehicle. The seats had been removed, and on the floor where the driver's seat would have been there were...snakes.  A nest of about 10 pretty big snakes.  They weren't particularly threatening looking, but...snakes.

Somehow, there was a little stripey kitten.  And a snakebite.  And then a toddler. And a snakebite.  

The story unfolded all night long. I got up to go to the bathroom at least twice, and went right back into the dream. 

The kitty got pretty sick.  She lost her left front leg.

The toddler got sick. Apparently a fang punctured a lung, but the baby got better with a chest tube.  

I have no idea what happened to the snakes. I do remember reviewing a picture I took of them with a snake expert and determining that none of them were venomous. Just so you know:  There is no picture. 

There was entirely nothing nightmare-ish about any of this.

When I woke up the sun was already up and it was after 6 AM. I apparently spent over 10 hours dreaming about...snakes. 

What. The. Duck.

DeeDee

PS It is probably the best news in the world that I have nothing else to talk about.

Quick General Update....

 Yesterday's Rochester Run was, thankfully, uneventful.  Her labs are stable, and they are again decreasing one of her transplant medications.  She's been flipped from the medication that looks like bright yellow finger pain to a pill.  Antivirals have been gone for few weeks.

No trip is complete without a walk, a restaurant, and music and conversation.  All of it was interesting, fun, and relaxing.

Next visit: TWO months.

DeeDee

Donor Families are Everywhere....

 Most donor families stay pretty quiet about their sacrifice.  There must be donor families everywhere, given the sheer number of transplant recipients there are. We don't generally hear a lot about them, or from them. I can't begin to imagine the range of stories, tragedies, incomparable pain.

I heard one of these stories today.  

In the early 1990's, the mother I met today let her asthmatic daughter go to that last swim class:  The one, her daughter argued, that would prove she was a good enough swimmer to go to camp and not have to "swim with the babies."  Later that night, her daughter went into anaphylactic shock. It was one of those, "We did all we could do, but..." moments. No one had any idea what happened. Chlorine? Mold? Her mom will never know. 

Her heart and lungs were damaged by the anaphylaxis. Her family, in what was certainly the worst moment of their lives, donated her kidneys, liver and pancreas.

Not long after, the patient's mom saw a news article about a man who'd received a kidney from a very young donor. She connected the dots, and she learned his story.  He was a young adult with 2 kids. His kidney failure was lifestyle driven.  To get on the transplant list, he had to get clean, stop smoking, and turn his life around.  When he learned the transplant donor was a child, he changed EVERYTHING.  He became a good and consistent father to his small children.  He never went back to old habits. He became a better person. 

The donor's mom finds comfort in this.  The donor's little brother, on the other hand, doesn't want to hear any of it. It angers him, somehow.  He was pre-kindergarten when everything happened. He and his sister were about as different in age as my little brother and me.  I can imagine, had I died young, that his life would have been radically different. I was his big sister. At those ages, despite the age difference, we were important to each other in ways that we didn't understand until years later. I can't imagine how either of us would be without the the other. 

Babygirl's life has been saved, twice over, by deceased donors.  The price their families have paid for that incredible, unimaginable, anguishing gift beggars imagination.

DeeDee

When the Power Goes.....

 We had an absolutely lovely Beach Week.  Babygirl and I managed far over 10,000 steps daily, typically because we were willing to walk a lot in search of the Bacon-topped Hot Donut or the Savory Crepe.  I'm not sure that we got any healthier because of the walking when I look at it in those terms LOL. 

While we were away, our little city had some exciting weather.  Central NY State does not typically see tornadoes. The last documented tornado in our city was in 1998, affecting less than 5 homes if I recall correctly.  

I haven't seen confirmation that what happened in our neighborhood was a tornado, although quite a few were documented over a several-county area that day.  But there is one block of one street 2 blocks from our house that was substantially damaged. There is a lot of damage across the river from us as well.  The power was out for about 22 hours.  The only damage at home was that our porch umbrella snapped off its support pole.

However.  

We had to ditch the entire contents of our fridge and freezer.  So while Babygirl unpacked all of the beach things, I unloaded about 60 pounds of food and put it in the trash.  This included the things we would have used to make our dinner last night and breakfast this morning. Were there things in the freezer that might have been salvageable?  We had no way of knowing what was "refrozen" vs what was "not thawed out in the first place."  The popsicles were two dimensional, clearly refrozen. 

The first rule of food safety for transplant patients is:  "When in doubt, throw it out."  Frankly, I didn't have a lot of doubt about it, but I really felt sad throwing out steak and scallops.  And bacon. 

Despite a 5+ hour drive home, and the time spent packing and loading before we left, PLUS the fridge clean-out, I went to Aldi to restock.  We still have some things we need that we typically find elsewhere, but nothing urgent. 

And here is the MASSIVE blessing of my life:

Despite a tough year emotionally and financially, I have the wherewithall to have a lovely vacation in a beautiful place, with enough money and energy left over to fully replace what very little we lost.  

DeeDee

Loosening.....

 Babygirl and I are at the beach this week. Two of my very best friends have been here as well. There has been conversation. Crying. Laughing. Storytelling. Remembering.

Babygirl has been coming to this beach town since she was 3. She potty trained here.  She learned to swim in the community pool.  She ran and played with her cousins and sisters.  With the exception of 2020 (Covid) and 2022 (dialysis) we have been here.

This week is "off season." It's delightfully quiet and un-crowded.  But there are no lifeguards.

The ocean has been...variable.  This morning was full of crashing waves.  There were riptide warnings for the first couple of days due to offshore hurricane activity.  The weather has been entirely lovely, if hot.

We have been in and out of the water. Each of the 3 of us who like the ocean has had a solid "tumble" of the kind that gets your attention but makes you laugh. I was in the water with Babygirl early this afternoon, but the look of the pre-dinner waves made me uncomfortable. I can generally get in, but it's getting harder for me to get out.

I got caught in a riptide once.  It was one of the most frightening experiences I've ever had.  There was a moment when I was contemplating how much it might hurt to breathe in salt water, and the simultaneous realization that I might not have a choice.

Babygirl looked things over and went in.  I sat on shore, letting the ebb and flow of the water push me around while I watched her.  Wanting to call her in but realizing I had no good reason to do so.  Wanting to protect her. Wanting.....

Like it or not she is a full grown woman. She is not careless of herself. She is fully capable of taking control of her own choices and safety. She has survived more "riptides" in her life than I ever will. 

It took far too long for my observation of her to change from the quality of Mom-Protecting-Toddler to Mom-Relaxing. I had to consciously loosen my hold. Loosen my muscles. Loosen my apron strings. Loosen my heart. 

Everyone who knows me well knows that I can hold more than one thing at a time in different "compartments."  The "worry about Babygirl" compartment has been quite busy for quite some time now.  I'm far overdue to recognize that she is already carrying her own weight here, and because of that I don't have to carry so much. Like the tide, however. my ability to loosen my heartstrings will ebb and flow.  

DeeDee

Maybe Hitting the Nadir....

 Last week Babygirl's creatinine dropped to 1.2ish.  Now it's up to 1.3something. 

Historically, Babygirl hasn't paid a lot of attention to numbers. Up until the initial transplant failed, she chose the "ignorance is bliss" approach and she didn't fuss about small changes.

While on dialysis, she became more aware of some significant consequences of her lab results:   Phosphorus will lead to calcification of your heart and lungs.  She was VERY religious about taking her phosphate binders and avoiding phosphorus in her diet.  She became aware of the physical symptoms of elevated potassium levels, and adjusted things accordingly. She learned the difference between hemoglobin (anemia) and hemoglobin A1c (diabetes). 

With this new transplant, she is Adulting.  (Example: It is currently 6 AM and she is up taking her antibiotic on an every 6 hour schedule, using her own non-mom alarm system.) I was, however, unaware of how tuned in she was to the kidney function numbers this time.  An in-the-car conversation about results made me aware that she is concerned about the upward bump.

Well. This kidney has had a hard ride. Damaged in whatever catastrophe killed the donor, traveling God alone knows how far, on ice for 27 hours and waking up in an entirely new body...

We discussed expectations.  This kidney may never work as well as the other kidney did.  However, lots of people live with low-level renal insufficiency for a very long time.  I told her about a colleague who had kidney cancer as a young child (extremely rare!) who has had a creatinine of 2 for the past 50 years.  We talked about the fact that the doctors knew in advance that this kidney might not recover fully (or even at all), but felt the risk was worth it because it was a perfect match, far less likely to suffer rejection in the long haul. The only back up plan was to continue dialysis. 

She has a better understanding of where she is right now.  The new kidney may not recover more than it has, so the creatinine may quietly bounce from 1.2 - ? for the next little while until, like the other kidney, it settles on a generally stable number.  It's just that the other kidney rested at 0.9 which was, certainly, a happier number.

DeeDee

The Dialysis Aftermath....

 Babygirl's last home dialysis was the Thursday before the transplant, June 8.  One of the most exciting things about getting a transplant is saying goodbye to all of that.  

Except....all of the stuff is still here.  The machine, the recliner, and thousands of pieces of miscellaneous supplies:  IV bags of saline, emergency supplies of dialysate. Needles, syringes, blood tubes.  Dialysis machine cartridges.  Bandages. Chux.  Bottles of blood thinners. IV tubing.  The medical iPad.  A centrifuge. This stuff was taking up 3 closets, and all the space under the spare bedroom bed, and more besides.

The dialysis team is coming to pick up the machine.  Maybe the centrifuge. Probably the iPad.  But all the rest, including the massive ugly hospital-style recliner?  They were ALL "Prescription Items" and are ours to keep.  But tell me what the living heck are we supposed to do with anything but the bandaids?  

I woke up this morning feeling fine, but within an hour I was tossing my breakfast, so I called in sick.  In between bouts of nausea, I helped Babygirl start dealing with it all.  Eight extra large trash bags land dozens of broken-down boxes later, we (mostly she, honestly) had the vast majority of the things that we can dispose of, disposed of.  We quite literally filled our oversized bathtub several times over with bags full of one type of fluid or another. We had to cut each one open, drain it, and stuff the remains into one of the endless trash bags. Decisions about whether huge packages of wrapped, capped needles and syringes needed to go into sharps containers or direct to trash. 

It is so incredibly wasteful  These are supplies that are sealed in impossible to open packaging in sealed boxes with labels attached.  But they can't be returned so someone else can use them. I am certain that we sent thousands of dollars down the literal drain.  

We had to run out for extra trash bags. And since Babygirl's doctors STILL have her on a 10-pound weight restriction (over what for her were some pretty strenuous objections), I got a work out hauling the bags and boxes down the stairs and out to the side of the house to await trash night. It's an impressive pile. 

As for Babygirl herself, she is doing well. She still tires faster than I'd like, but much less so than before the transplant. Her creatinine is down to 1.2, which is gradually approaching normal.  She is still significantly anemic. Her acid levels are creeping up to uncomfortably high levels, and her blood pressure is high.  All of these things are manageable, but are definitely keeping her from moving from twice-weekly labs to weekly ones. We remain on biweekly visits to Rochester.

I spent some time today trying to recall how all this was handled last time.  I don't remember what happened to what must have been a similar amount of unused stuff, but I don't remember getting rid of it all. I do remember taking biweekly trips to Philadelphia for what seemed like a very long time, but without so much blood work in between. Different team. Different kidney. Different approach. Different life. 

DeeDee

The "Q" Days....

 We in the medical world superstitiously HATE hearing someone say the "Q" word.  When things are peaceful in the ER, and the ICU is miraculously crisis-free, and there hasn't been a sleep-interrupting ring of the phone during an on-call shift, someone innocently saying, "Wow! It's Quiet in here!" will get a universal round of groans and weeping.  We all know that mentioning that word will instantly trigger some kind of chaos and effectively end the Q time.

So I hate to say that it's been quiet, medically.  Babygirl's labs have been slowly but steadily improving. Her general sense of well-being has been steady and her endurance gradually increasing.  Her last creatinine was 1.3, continuing a long, gradual downward trend (I just read an old blog post talking about needing a kidney biopsy to rule out rejection because her creatinine had risen to 1.4, but we are playing a different game here).

I've attended yoga twice this week. I had a massage Sunday after returning from the mission trip.  Self care is adequate but not spectacular.  I'm getting there.

So far Babygirl hasn't been up to going hiking, but she is walking dogs here in the neighborhood. 

I'll take the Q, thanks.

DeeDee

Down to Once a Week....

 I can't clearly remember how long we were on a twice weekly follow-up schedule following Babygirl's first transplant.  I know we stayed in Philly for a bit, and then Hubby and I took turns, one day a week each, to get her there.  

We are done with twice weekly trips now, and it feels sooner than last time. I'm not saying it is at all a bad thing!  She still does blood work twice a week, once locally and once in Rochester.  That schedule is holding for next week as well.

Currently the new kidney appears to be doing quite well. Creatinine on Monday was 1.56, 1.52 today.  As long as each is lower than the last, we know the kidney is still recovering. Babygirl's last transplant gave her a completely normal creatinine of 0.8 within 48 hours of installation, so this is a very different ride, but... it's reassuring.

It's reassuring enough that I'm packing to leave town for a week on Saturday. (The team was working on a backup plan in case I couldn't make it.) The mission trip is part of my heart and soul, and two of my Grandboys are going along.  I spent most of the 4th sorting tools, shopping with the boys, and generally prepping to get it all on the road.  After Babygirl and I arrived home today I got the tools loaded in the trunk.  I'm still working on bedding for 3 and clothing for me. 

While I am gone my beloved sister-in-law is coming to spend the week and to make the lab and Rochester runs.  

Currently I am sitting in my damp bathing suit, which I will leave on while I finish things up. I'm very likely to need to get back into the pool again shortly LOL.

DeeDee

High-level Tired....

 We left this morning at 6 AM for our second trip to Rochester this week.  Her appointment was at 11, labs to be done first (which takes about 1.5 hours due to staffing shortages).  Babygirl's bladder has not had very much to do for the last 18 months, so now that she is producing large amounts of urine, she has to pee every hour until her bladder stretches out some. Taking all of that together, allowing 3 hours for travel and breaks and granting additional in case of more than usual glitches in the lab, we planned to arrive around 9. Monday's appointment was at 10.  We went the night before and stayed in a hotel for that one.

Travel was pretty efficient and the lab fairly timely, so we had time to take a (smoky!) walk in the big cemetery across from the hospital. We spotted a pretty good sized pyramid in the distance (I assume a mausoleum) so that's our target for the next walk. 

The visit went quickly. The doctor sent a message to urology to tell them to cancel the (to him and us) unnecessary extra appointment in 2 weeks. Why do they need to see her twice in 3 days? He discontinued her water pills since she has lost all but 4 of the 60 pounds of extra fluid the transplant gave her. He increased an antiviral since her kidney is functioning well enough to remove it. 

We got her most recent lab results: Anemia is improving (showing good long-term function of the kidney) and creatinine is down to 1.7 (from 7 or 8 after the kidney went in).  Yippee! The kidney, while not functioning perfectly, is officially awake. 

We did some exploration of the Erie Canal on the way home, and had dinner at all-you-can-eat crab night at the local casino.  

We arrived home at 8.  

I am too old for 14 hours of travel in one day.  Even if it's a GOOD day.

DeeDee

Weird Stuff Part II....

I should have waited one more day for the last post.

Last night at 11:30, long after Babygirl and I had gone to bed, my cell rang from a PA number. Since I have family in PA, I picked up.

Random Man With Deep Southern Accent:  "So, Ma'am, are you still interested in buying the snapping turtle?  It's a GREAT turtle. It does tricks and it even barks!" 

Me: "You have the wrong number," followed by me hanging up.

RMWDSA: Calls back. 

Me: "You have the wrong number."

RMWDSA: "Please text me." 

Me: "No." and I hang up. 

RMWDSA: Calls back AGAIN. "Ma'am, about the turtle...."

Me:  "I am a LONG way from home and am taking my kid to the hospital in the morning.  If you wake me up ONE MORE TIME I am coming through the phone to ducking KILL you."

RMWDSA: "OH! Sorry, Ma'am. Yes, Ma'am!" Hangs up.

I mean.....I can't....what?

DeeDee

The Weird Little Stuff......

 We are back in Rochester for Babygirl's recheck tomorrow morning. I gave some thought to this process on the way.

During any journey, be it medical, educational or recreational, things happen.  The are rarely germane to the process in any way, and get left out of the main narrative. Here are a few examples:

On our (rapid paced!) way up here to receive the transplant, we hit a 30 minute traffic jam.  There was no immediate evidence of construction or police, and we just crawled along with the crowd.  When we finally began to arrive at the problem, the first thing I saw was skid marks leading to a big Penske rental truck, cocked at an angle in the left lane.  Getting closer, I could see evidence that a fire had been put out,  Passing the truck, we came to a tow truck that had already loaded the cremated remains of a crumpled car.  If the people who were in there didn't get out quickly, there's no hope that anyone in that vehicle survived. It was not the most hopeful thing to pass when you are taking your kid for major surgery.

In completely the opposite spirit:  On our way here today we passed a small pickup truck.  Bumper sticker read, "I'm really happy with this tiny truck because I have an ENORMOUS penis." I laughed so hard it's lucky I didn't crash.

I had one sleep deprived moment when I asked one of her doctors some question that was breathtakingly stupid.  They patient explained whatever it was without actually saying WhatTheDuck is wrong with this woman. 

Clearly, there are a lot of things that just....happen.  But the best, oddest, WhatTheEverlivingDUCK moment was when one of kidney surgeons was discussing maintaining a good blood pressure, as Babygirl's was running low and he wanted higher pressure to keep good blood flow to the transplant.  

"If your pressure is too low, I want you to get some French fries. NO, don't eat them - you are diabetic. Just lick the salt off of all of them." I am absolutely sure he meant it. 

You canNOT make this sort of thing up.  

The difference between surgeons and medical people?  Transplant nephrology said, "If you aren't lightheaded your blood pressure numbers are irrelevant. If you are perfusing your brain, you are perfusing the kidney."  He stopped the medications that were there to push her pressure up. 

Thank God for the ones with common sense.

DeeDee

Adulting is a PIB....

 When the kids were little, before I took up cussing like it was a full-time job, I used to call them PIBs:  Pains in the Butt. It's more polite than the commoner PITA. 

I spent nearly ALL of today doing adult PIB stuff. 

I began with a list of 7 phone calls I needed to make. I think I made 15 of them and have one left. 

We need a place to stay Sunday night for Babygirl's Monday appointment. I needed to try to rearrange some of her urology appointments so we don't have to make 3 trips to Rochester in one week instead of just 2. I had to check in with Employee Health so that I could return to work as scheduled. Clear up insurance info on past due medical bills. You get the idea.

I also closed the bank account that I opened when I was 18. Since about a dozen things were being paid directly out of this account, I had to make phone calls/website visits for all of these as well.

Almost everything has been handled. A couple of things are works in progress.  And to add to it all I kept GETTING calls. One of those calls was extremely useful, however.

Babygirl's Medicare plan (United Healthcare - I can't say enough good about this in her situation) has a transplant coordinator. She called to see how Babygirl was doing since the transplant. And the readmission. How is she doing monitoring her blood sugar?  How is she managing her medications? Side effects if any? 

Then: "Are there any financial challenges due to the transplant?" "There would be if she had to pay for it herself."

It turns out she qualifies for up to $125/day for travel and expenses. This will likely backdate to her May appointment, and would be enough to get back all of her (my) hotel and mileage expenses. This would be a blessing for certain.  We need to get prior authorization from her Rochester doctors, which will most likely be entirely handled by Rochester's transplant coordinator.  

I'm a little excited that all my Adulting PIB crap may have some valuable yield. 

DeeDee

The Gradual Wake-up......

Yesterday's follow up visit in Rochester was LONG. The appointment was at 10:30, and she was to have labs before she went.  We left the house at 6 AM, and arrived before 9.  The plan was to get the labs done, and then go for breakfast.

She was in the lab for over an hour.  This is, I hear, typical. For some reason, hospitals lost more phlebotomists than any other group of people when vaccine mandates were placed.  None of us have recovered to pre-pandemic blood-draw capabilities, but DANG. We snagged some (perfectly terrible) breakfast sandwiches from the cafeteria and bolted upstairs for her appointment.

They were running behind, in large part to the lab delay. Some patients had given up on the lab and come upstairs because they didn't want to be late for their appointments, which meant that the nurses had to draw their blood, adding to the slowdown. 

We'd met the doc last year when she got on the transplant list.  Babygirl said, "I forgot what a....presence he is."  He is, as they say, "a lot," but adorable, communicative, and upbeat. He was overwhelmingly enthusiastic about the new kidney. Babygirl is making more that 3L of urine a day, and it is finally completely clear.  Her weight has dropped from 189 to 166 (2 gallons down, 3 to go!). Her potassium and phosphorus levels are normal:  "Eat more of everything we told you not to eat or those levels will go too LOW." He remains concerned about her blood sugar and wants her to watch it more closely.

But the most exciting for me is that her creatinine has dropped from over 6 to 3.5.  Normal is under 1, so we aren't there yet, but this was a massive change compared to the previous gradual creep toward normal.  Transplant nephrology plans to notify dialysis nephrology, and let them know that they can come and take all of her dialysis stuff back. Babygirl is very excited about regaining some space!

The transplant pharmacist went over all of her medications in detail. One has been discontinued, and another decreased.  Next appointment is Monday. 

We arrived home at 5 PM.  Thankfully, my SIL had come up from Philly and did all of the driving.  I'm exhausted but I can't sleep right at the moment. I have a list of 8 phone calls I need to make today to cover things like paid leave, appointment rescheduling, and home financial stuff.  It's clearly too early for that, so I'm going back to bed. 

DeeDee

Elopement.....

 Babygirl was discharged Tuesday. Things continued to be stable, or gradually improving.  

The docs came in and told us this.  I told them, "I live three hours away and a friend is coming to pick us up. It will take them 3 hours to get here. Should I call them?"  "Sure."

Nearly 3 hours later my friend was about an hour away, and we'd seen no hint of discharge paperwork, IV removal, catheter supplies etc.  I asked for an update from the nurse, and she said that the discharge orders hadn't been placed yet.

I've waited a lot of hours in my life for discharge.  The record was 15 hours once at CHOP.  Last week here it was 7 hours. I've got somebody doing the MASSIVE favor of driving a total of 6 hours so we can get home. 

"We were told 3 hours.  So when my friend gets here, this is what is going to happen:  We are going to LEAVE.  With or without discharge papers. I know how to take an IV out myself, and I can get supplies from my own hospital if it comes to that."

Well.  That made her, verklempt.  She is the person who will take the heat if we elope, and it isn't her fault at all.  But DANG, this is our second hospital stay in less than a week and I am DONE.  She asked if we had been told a specific time for discharge, and I mentioned the 3 hour story as above.  "You really should have ASKED for a time."  "Your doctors should be able to effectively communicate a time."

She scurried.  She pushed cajoled, and bugged people. She made sure we had the supplies we need so that if we walked we wouldn't go unprepared. 

My friend arrived, and the nurse was still working on things, and said, "But it's dangerous to leave without instructions!"  Well, considering we got 12 pages of instructions literally read to us line by line only 3 days ago and nothing has changed except the catheter, I think we're covered. About 20 minutes later she got the paperwork, Babygirl signed it, and we asked for the wheelchair that we'd been using to Babygirl from point A-B.  "There's a meeting in that room.  We have to wait for transportation." 

The hell we do.  I asked Babygirl if she thought she could walk it.  She said yes.  I picked up all of our stuff and we walked out unnoticed. 

We made it to the discharge area, unnoticed.  And ran away to home.

A HUGE thanks for such excellent friends. 

DeeDee

Don't Use the "Q" Word....

 After yesterday's chaos, today was a calm day.  I mean, I had a Reuben for breakfast at 10:30 AM. 

We don't know much more now than we did this morning.  Things are not getting worse, and may be slowly improving. Labs, generally are better. The morning ultrasounds, not different enough to lead to any procedures today but requiring follow up. My brother asked if the kidney was "woked up" yet.  I said it's not, but it appears to be sleepwalking. We'll take it as progress for the moment. 

No one has really spoken about discharging Babygirl from the hospital yet except to say that she may need to keep the catheter in for another week at minimum. Even that was nebulous, so we are just in wait-and-see mode. 

Personally, I think they stopped the bladder irrigation too soon, and discharged her when she was still less than stable.  But nobody died, and except for a few hours suffering due to the overfull bladder (which we can both be salty about for sure), she has not lost any ground as a result.  

We got outdoors today into the sunshine, which made Babygirl very happy.  She did a lot of walking, and I pushed the wheelchair a few hundred extra steps. She has been sound asleep for over an hour, and I confess I snoozed a bit as well.

Those of us in the medical word are deeply superstitious about using the word "Quiet."  But that is the best description of the day that I can give, and we needed one of those.

DeeDee

So, What the Duck Just Happened.....

 It's almost 11 PM, and my day started around 5 AM and has, thus far, included 2 meals from McDonald's, 2 ERs, one 3 hour ambulance ride, a PBJ, a most delightful conversation with a yoga instructor/Uber driver, and being known by name on sight to the hotel front desk staff.

What do we know so far? Other than acknowledging that having a catheter feels better than an overfilled bladder, not much.

Babygirl had a urinary catheter in place from last Saturday morning until about 12:01 AM Friday. That catheter had to be changed, and was frequently manipulated during multiple irrigations. From the time of the catheter removal until about midnight last night,  (24 hours) Babygirl was voiding reassuringly clear urine, but not in large amounts. 

Then there was the clot. And then the urinary retention. 

What we don't know is whether or not the inability to pee was due to blockage caused by additional clots, or whether it was due to spasm of the urethral sphincter as a result of having a catheter for 6 days. All of the urine today has been bloody (from Hawaiian punch to pink lemonade) but with no clots. However, the AMOUNT of urine she is making is excellent - more than 2 1/2 liters today, actually more than she drank for the day. 

Her blood work doesn't look bad. She is gaining ground on the anemia.  Her potassium is normal. Her kidney function is stable, maybe a little better, but it still sucks. 

Additionally, her weight continues to rise due to water retention. We're up 55 pounds in just over a week. Nephrology will be seeing her tonight and reassessing the plan for this, I guess. 

For right now, she is admitted.  She told me that she is going to be angry with me if I show up at 8 AM. "Get some SLEEP, mom!"

That is the plan. 

DeeDee

The Merry-go-round.......

 "Mom.  Mom, I think I need to go to the hospital."

My brother drove up from Philly yesterday to help out. So far he has put a ceiling light fixture back together, and shared 3 bottles of wine with me.  We had a significant sibling therapy session until about 2 AM. I gotta stop drinking. It makes ducking medical sh.....stuff happen, apparently.

Babygirl was doing well enough yesterday.  She walked with me through the Farmers' Market, and I pushed her in a wheelchair cart through Aldi. After a long nap, we went to Walmart where she practiced driving a store scooter. 

Around midnight, she called me to the bathroom to look a clot she'd passed.  It was 2-3 cm x 1 cm, but her urine otherwise looked normal. "We just have to keep an eye on it."

At 5:30 she woke me up and told me that couldn't void at all, and she was in pain.  Enough pain to make her cry.  I'd like to point out that this has happened only once before, due to nerve pain after a spinal tap. Her pain levels in the hospital with a fresh 9" incision she rated as 5/10.  This she gave 7-8/10.  We called the Transplant Team as we were driving to the ER. They agreed that local assessment was appropriate. 

Currently she is parked at Wilson, with a catheter back in place. Her bladder drained almost 800 cc, and she feels much better. I'm across the street at McDonald's getting breakfast and coffee, waiting for labs. 

I would very much like to get off of this ride.

DeeDee 

The Hidden Costs of Medical Crises....

 Fortunately for us, there should be no true bills for Babygirl's transplant. She is disabled, and has Medicare and Medicaid.  The hospital is taking over her transplant medication at their transplant pharmacy, so I will no longer have to sit for half an hour at CVS until they finally (once again!) figure out that she doesn't have BC/BS and that her co-payment is currently $0.

This post is about the more subtle costs of an 7 nights/8 day medical stay.   

Babygirl's current transplant center is slightly closer to us than CHOP was at 145 miles vs 174 miles away. In the case of CHOP, however, we had family to stay with less than an hour from the hospital. This meant, for the most part, breakfast and dinner with the family and lunch at the hospital, dinner on the way home.

We have friends in Rochester, and could probably, in a pinch, find a couch to crash on, but the hospital has an arrangement with several local hotels to discount stays for patients and family. (Having a private place to decompress (ie bawl your face off) is sanity-saving.) A couple of those are less than 2 miles from the hospital (walking distance for me, weather permitting).  Total hotel costs on this trip came to $476. Most of her appointments in the next few months are at 8 AM.  Deciding whether to drive down the night before or before dawn is a difference of $60-80/trip. We will be going twice weekly for a month or so, and then weekly for a while. 

Last time I was here with Babygirl, we arrived via ambulance in the dead of winter.  I kept meal costs down by using InstaCart for groceries, which I used for breakfast and dinner, and sometime even for a packed lunch.  I made up for it by needing to use Uber to travel all of the time as it was too cold and icy to walk.

This time, I had my car. I didn't pay to travel, but I wasn't as thrifty with food. Meals out became one of the biggest costs at $303.

Miscellaneous costs were also high, as I had to replace a laptop in addition to other incidental costs: $459

I had to shop for clothes for Babygirl.  She packed as if she were going to camp, but by the end of the hospital stay, none of her clothes fit due to the severe fluid retention. This included her sneakers. $80 to Target for two outfits and expandable sandals 2 sizes up from her usual. 

OTC medications and incidentals (which may or may not include nail polish for Citygirl and Babygirl): $67

Parking was odd this time, as apparently they were short staffed at the garage. They only charged if there was someone on duty. Instead of paying $42, I paid $12. Gas was $63. 

We are blessed beyond and beyond by having the means to cover this, even if it tightens the budget a bit.  We are even more blessed that friends and family just keep walking up to us (or to our Venmo or UberEats accounts) to give us money. We have been given a total of $750 in this way.

The total non-medical cost of this trip was just under $1500, half of which has been covered by the kindness of friends. 

I got me some thank-you notes to write.

DeeDee

Restarting the Insurance Battles.....

 Babygirl is going home today.  All the doctors have seen her, PT made her climb some more stairs (12 this time!), she has been given and taught how to use a glucose meter. We need diet lists for low phosphorus and low potassium diets (potassium is easy to find online, phosphorus is more complicated), but I want to know what THEY want her to do, thank you.  The doc who is discharging her told us to ask for them when they give her the discharge papers. This seems needlessly.....delaying.  I'll ask the front desk soon.

I did a Target run last night to get roomier clothes and shoes to accommodate the now 50 pounds of extra fluid. The kidney is still asleep. I will need to do a pharmacy run before we leave. 

In the meantime, insurance.  

I took Babygirl off of my insurance at the end of last year.  She is 23, and she is entitled to extra coverage from Medicare for 3 years after a transplant, so I figured she'd be covered until she was 26 one way or the other. Because she is disabled, this will probably continue. She is poor, so she'll get Medicaid as well.  Since having 3 insurances last year was a clusterduck, it seemed practical to get rid of BC/BS.

I got a call a day or two ago from her Medicare provider that they had "authorized the kidney transplant." Well, that's super kind of you. 

They told the hospital the same thing, but reminded them that she still has BC/BS.  Well, no.

I have had conversations with Medicare about the discontinuation of the BC/BS, MONTHS ago.  I'm still struggling every time we go to the pharmacy with the "she still has BC/BS concept.  

Yesterday I called BC/BS. They confirm that Babygirl is NOT insured.  I proactively asked them to send me written proof of that.  

Lord.  None of this is complicated, is it really?

DeeDee

I Want Coffee....

 For a very long time after her last transplant failed almost 18 months ago, Babygirl has had issues with how things taste and what she wants to eat, and some general overall poor appetite.  One of the things she has not tolerated well has been coffee, a daily staple since she was 2 (she's from Guatemala. She CAME to us addicted to coffee).  Even the AMAZING coffee at the Farmers' Market was dicey. She'd ask for half a cup and throw most of it away.

But for yesterday and today at least, she's ordering coffee or decaf with her meals, and iced coffee today, and generally finishing it.  The numbers on her new kidney still suck overall, but she is peeing a lot more.  Call me crazy, but I find it reassuring that some of her pre-kidney failure taste is returning.

We will most likely be heading home tomorrow.  They are pulling her catheter at midnight.  Why midnight, you might ask (because I certainly did)? Because it takes a few hours to fill a bladder, and if she is going to have a problem with clots or spasms or poor emptying they'd rather she have to deal with it in the morning rather than the middle of the night. Sometimes the odd things doctors do make a peculiar sort of sense.

We have to return on Tuesday, and again on Thursday.  I need to spend at least part of my day tomorrow updating those leaves with FMLA.  I also would like to ask her primary doctor if she needs to do any blood work for him. She's due to see him in July, so he might want updates on the stuff he manages, like her blood sugar and cholesterol (although I think endocrinology is on board for the time being as well as nephrology and urology).

My gratitude to the people who have stuffed our UberEats and Venmo with cash so she can order whatever-the-duck she wants to eat while we get the house reorganized. 

My eternal love and gratitude to all of you for your support, prayers, kind thoughts and good wishes.

DeeDee 

PS I'm leaving the laptop with Babygirl for the night so she can watch endless anime.  She was also watching a video of an very elderly RBG doing PT.  It's amazing what is online, and what catches her interest.  

Pink Lemonade....

 I am doing better, thank you one and all for your concern and prayers. Our day was immensely blessed by a visit from our former pastor.  He was around for Kidney Transplant 1.0, and used to carry pockets full of medication to go with her meals and snacks. He came just short of commanding God to wake up that kidney.

Today's nurse was a childhood transplant recipient, himself on transplant #2.  It's always a hopeful thing to meet someone who is further down the road you are walking on.

Babygirl is stable. The kidney is still sleeping, but she is off of the heart monitor, which she was on due to the cardiac risk of elevated potassium levels. Her potassium is being controlled by diet and by giving her a medication that sucks potassium into her gut and eliminates it from that route. Her calcium levels are extremely low (an indirect abnormality due to other things that kidney failure triggers), so that has been supplemented IV. They expect to stop the IV fluids, although so far every time one group tells her this, the other says, nope, need to keep it going. So we'll see who wins this time. Her urine resembles pink lemonade. Her output is good, but not keeping up with the fluid backlog. The catheter is still producing some clots, on the smallish size, and irrigation isn't getting anything much more than that, so MAYBE the catheter will be out tomorrow? If so, the question is, can she pee on her own, and will any new clots clog things up?

If A, then B, then C all happen, we might go home Friday.  If not, it might be Tuesday. Or she may come home with the catheter. In any case, we need to be here Monday because even if we go home, she sees the doctors up here Monday and Thursday morning for the next few weeks. 

If she stays the weekend, I will leave on Friday for home.  There is no space in the discounted hotels for the weekend, and I am almost out of medicine. And the garden needs to be weeded. And the dogs cleaned up after. And the pool monitored. And Babygirl's room cleaned to post-transplant levels. And the icky 2-week-old food cleared from the fridge.  

You know, a day off. 

In any case, I did a Target run to get clothes that will (I hope) comfortably fit over the now 40 pounds of fluid she is carrying. There was a cool anime T-shirt on the sale rack.  I'm hoping she likes it.

DeeDee

Facing Down the Day....

I am tired. Discouraged. Weepy.  All things that Babygirl does not need to see today, or any day for that matter. 

Nothing specific has happened since yesterday, it's just that I need an injection of something stronger than coffee to keep me moving today.  I need optimism.

The problem with being a physician is that the Doctor portion of my brain is always making lists out of medical information:  What is the likely problem?  What is the worst possible problem? The things on each list are identical, but the first orders things from common to uncommon while the second orders things from most deadly to least deadly. If the person in front of you is your patient, this is the best approach: Eliminate the deadly things with the appropriate tests, and confirm the likely things in the same way.

The problem with Babygirl's situation is that she is uber-specialized. Every single thing that has happened and is happening to her remains almost entirely out of my scope of knowledge. What I do know frightens and confuses me.  

Usually in an acute family situation I am able to let the doc in charge prioritize, while I compartmentalize and put the medical that I know into a box and sit on the lid. Babygirl is very aware of this process, and smart enough to ask me to keep the lid on the damned box, at least in her presence.  Typically, compartmentalization has been my superpower, but I apparently let the lid go in my sleep last night.  I absolutely KNOW that I have no control over this, but I want to find a way to control it. That way lies madness. 

I've showered. I've had breakfast. I've had my coffee. I've meditated and spent some time in prayer for others that I know need that. And now I'm writing. Documenting what is INSIDE my head puts it OUTSIDE my head, usually. Whatever I do, I need to go to that hospital in a few minutes with no swelling under my eyes and a smile on my face. It's what moms do.

Keep those prayers coming. The entire serenity prayer needs to be downloaded and hardwired into my soul.

DeeDee

Still Sleeping...

 It feels like it's been a long day, although actually it's been a full day on a night of poor sleep.'

I was very slow to get going this morning. Visiting hours are from 8 AM - 8 PM, and I've been there at opening bell so far, but it was 8:05 when I let Babygirl know I hadn't left the hotel yet.  She said, "That's okay, they're sending me for dialysis." 

This is the second time since the new transplant that they've had to do this. The issue this time was rising potassium (although not as bad as the emergently terrible level a couple of days ago) and rising creatinine. Since visitors are not allowed there, I had some extra time.  What to do?

I was in need of some headphones, since Babygirl has been using mine.  Maybe a pedicure? Maybe...? It's fun to have some choices.  

I went to Target for headphones. I debated a pedicure, but really, I just had my toes done.  Besides, we had "transplant training" scheduled at 11, although it was very unlikely that Babygirl would make it back in time for that.

So I took a walk. Babygirl is tired of being indoors, and so I snapped pictures of all kinds of crazy things for her: Sculptures, historic markers, flowers, a hot dog stand, historic gravestones, flowers, and more sculpture, socks for sale in the gift shop. There is a MASSIVE cemetery across the street from the hospital. Frederick Douglas and Susan B Anthony are buried there (and now I feel obligated to go hunt for them LOL). Our nurse told us that when he was in 8th grade his class did a "famous peoples' graves" scavenger hunt. I was impressed and maybe a little appalled. 

Babygirl is feeling better enough to take a lap or two around the nurses station, unlike Sunday, when she made it 10 feet and had to sit down.

Since the continuous bladder irrigation (which is, by the way, painless) was discontinued, she has continued to see blood and small clots in the catheter tubing. Urology continues to come to do manual irrigation (which is, by the way, NOT painless) every 6 hours.  There are always clots, although typically smaller than a grape in size. 

And, as you can guess from the ongoing need for dialysis, the kidney is still not "awake." 

DeeDee

Chunky Merlot....

 Warnitng:  There are photos. You might not want to see them.

Also, Babygirl has granted permission for you to see them.  Those of you who know her well....she's laughing at you.

Reflecting on the last post:  Blood clots are all well and good when they are usefully plugging a hole in your body so you don't bleed to death.  Other than that, they can be....problematic.  Now, Babygirl's clots aren't the kind that can travel anywhere but out. There is no connection between the bladder and say, the lungs or heart.  That doesn't mean that they can't wreak havoc locally.

An ultrasound revealed a 10 cm clot in her bladder. For the metric-challenged, that's about 4 inches.  If spherical, we're talking half a liter of blood, one entire transfusion unit more-or-less.  It's not going to fit out of ANY catheter, no matter what size.  

Enter The Urologist with a couple of gallons of saline and some very big syringes.  She explains the nature of the problem to Babygirl:  It's big, it's blocking bladder drainage, and it may be putting pressure on the new kidney.  "We have to break it into small enough pieces to suck it out.  Sadly, I'm going to make you feel worse before I make you feel better." Honestly, a better approach than the doctors who hurt you and tell you you're being a baby about it.

This woman had no ducks to give with regard to putting her weight behind the fluid she was blowing into Babygirl's bladder.  She kept it up for somewhere between 20 and 30 minutes. Babygirl broke out in a sweat and stayed that way, but did not complain.  The doc said that older men had been known to scream obscenities at her at this point.

And this is what we got, 4 liters' worth:  

Yes, she's very pregnant.  She was putting the weight of two people into her work today.

The surgeon described them as ranging from "chunky Merlot" to "Hawaiian Punch" to "pink lemonade." I'm not sure what her fascination was with drinks, but....

Babygirl is more comfortable now.  Since this massive (invasion of privacy) irrigation, she has been placed on Continuous Bladder Irrigation (CBI). That means that there is constant addition of saline to the bladder, which then drains out the catheter, creating "a river rather than a pond" to decrease the risk of additional clotting. 

And no, no one is completely sure where the blood is coming from. They are admitting that the amount of blood is unusual, but no one seems particularly worried about it. The one reassuring thing is that it is collecting in the bladder rather than outside of it. THAT would mean they need to go back in and fix something, preferably yesterday. 

DeeDee

Blood Clots and Other Fun Things....

 The kidney is still really not much "awake." Her creatinine was coming down a bit, and is now going up a bit. Patience. Is. Not. My. Strong. Suit.

Her urine has become increasingly bloody, and they have flushed her catheter a couple of times and brought out some small clots.  However, a bladder scan this morning picked up 300 cc (a comfortably almost full bladder) when her bladder should be empty. I mean, there is a catheter in there.

Urology was in to try to wash all the clots out. Flushing was less than successful, so the catheter was changed up.  She said, "Think of it like drinking a really thick milkshake. A bigger straw makes it easier." Yikes. They will be back to keep things draining.

The surgical team (urology) isn't sure where the blood is coming from specifically. It could be from where the kidney is connected to the bladder. It could be the kidney itself. They did not express any concern about her progress. They do not know where the kidney traveled from, but it was "on ice" for 27 hours. Up to 36 is considered acceptable. Again, yikes.

However, on the more fun side, Babygirl is able to move to a sitting position in the bed without assistance. She ate some breakfast. We got her into the bathroom to freshen up, which made her feel better overall. PT came and took her for a hike down the hallway, and had her climb up 2 steps.  She is supposed to get up and walk 4 more times today if possible.

The medical team (nephrology) hasn't been in, and they are the ones who will be making the decisions about what to do with the 30 pounds of fluid that Babygirl has aquired since she arrived.

DeeDee

Waiting for the Kidney to Wake Up.....

 It took quite a while for Babygirl's new kidney to arrive here from wherever it came from.  That means there was a long "cold time."  From the time an organ is harvested until it is attached to its new owner, that organ is kept on ice to slow cell death and improve viability.  The longer the cold time, the more cell death/organ damage. The longer the cold time, the more likely it is that the organ won't function as well (or at all) when transplanted.  

How do you see if the new kidney is doing what it is supposed to do?  

1) Measure the urine output. For someone Babygirl's size, normal output with 2 liters/day input is 30-90 ml/hour (about 1-3 oz/hour).

2) Measure the standard renal function tests (BUN/Creatinine/GFR).

3) Measure secondary labs of things affected by kidney function: Potassium in the short term, hemoglobin in the long term. 

So, Babygirl.

1) Last night her urine output was about 15 ml/hour. This has improved but not entirely normalized with overhydration, which leaves her feeling really puffy and bloated. She has a catheter in, and the urine is bloody (which is not surprising but last time I recall a large quantity of clear yellow urine). To be safe, they just flushed the Foley catheter, which removed some small clots, and allowed a moderate amount of trapped urine out. This did make the output look somewhat better.

2) Standard renal function tests look, well, terrible.  Since the kidney isn't putting out much urine, this is not unexpected, and will hopefully improve.

3) Hemogobin just doesn't count here. She was anemic getting here, as always, and lost blood during the surgery, and is still bleeding into her urine, so no matter what the new kidney has to say about it, she's going to stay anemic.  Anemic enough that she is getting a transfusion later, once there is an IV available that isn't already occupied with giving her some other life-saving medication. 

Potassium, however?  THAT went up from normal (3.5-5) to 7.5 after Citygirl and I left last night. So the emergency dialysis team got called in for the second time since we got here to dialyze her in the night.  She did not get much rest. Subsequent potassium levels have hovered above 5, but in the high-but-safe range.  7.5, by contrast, is in the cardiac arrythmia range. She is on a potassium restricted diet (apple juice ok, OJ no way).

I've been told it can take a week to "wake up" a stressed transplanted kidney.  Because of this, she may require dialysis off and on during that time.  

Unrelated specifically to kidney surgery (in other words, complications that can occur with ANY abdominal surgery), she has a collection of fluid in the abdomen.  It wasn't there postoperatively yesterday when she had her first ultrasound, but it was there this morning. CT scan confirms the fluid, but (somehow?) made it clear that she does not need a drain placed, or surgical evacuation.  Repeat ultrasound in the AM.

There is a team of 8 people in here right now prioritizing her need for anti-rejection medication against her need for blood.  It is a complicated rock/paper/scissors game, trying to avoid giving 2 highly allergenic things at once, making sure that if she has a reaction to something, we know which-the-heck thing caused it.

This is more-or-less run of the mill postoperative....stuff.

That doesn't mean I am enjoying the moment. 

DeeDee

How "The Day" Went....

Yesterday was momentous.  Terrifying. Full of excitement, fear, grief, joy, gratitude. 

Very shortly after my last post, Babygirl's surgeon (who, buy the way, I have never (and might never) laid eyes on called to tell me that the surgery went well, was uncomplicated, and Babygirl was headed to recovery.  Weeping in public is generally not my thing, but....there we were. I tried to put in a blog update, but discovered that my poor computer, which had taken a little fall Friday evening (the power cord got tangled in Babygirl's hospital bed while they were starting to move her to dialyis) died. It was the final blow to an already cracked screen.

Citygirl and I, aware that there was a LONG wait for recovery, went to lunch.  The Lebanese place was closed, but there was Indian take-out next door.  We then headed to Best Buy to replace the laptop.  Since there was a Target in the same plaza, Citygirl eagerly went there to find some clean, comfortable clothing. 

I was in Best Buy for less than 20 minutes.  I found a laptop on sale, a sleeve to keep it safe, threw in the 2-year protection plan and walked out for just over $250. My credit card breathed a sigh of relief because it was the first non-alcohol purchase in over a week.  I'm pretty sure I was going to start seeing ads in my feed for rehab.

I went to the parking lot, unpackaged everything and left the box/papers/etc etc etc in the cart.  Don't judge me. 

I met Citygirl at Target, and found an adorable (translate: Appropriate for elementary school) backpack/cooler. Since a computer backpack priced in at $149 (what the DUCK, Target?) I felt this was a better option. The cooler foam will add some cushion to the little sleeve, and have room for the rest of the crap I'm toting around. Citygirl found some very cozy sweats.

We went to the new hotel, checked in, got Citygirl changed and went back, stopping in the parking ramp so I could grab a clean shirt from the trunk of my car, since the saddest thing that happened to me yesterday was dropping a freshly-purchased cup of Iced Americano, which exploded all over me and the waiting room carpet.

The we waited. And waited. And waited. We get glimpses of eternity in these waits.  Citygirl did work on her computer. I read, watched stupid entertaining videos on my phone, and spent some time getting the new computer up and running (a work in progress to be sure), and wandering around until I found the hospital chapel.

I was forever. It was frightening.  After much longer than the expected wait, we went to the cafeteria, got some sad salads for dinner, and decided we would demand an update when we got back.  I turned out to be unnecessary. Babygirl was back in her room.

We stayed with her until visiting hours closed at 8, went back to the hotel and drank a bottle of wine by the pool, and literally cried about everything from 1998 until now and went to bed feeling...cleaner.

Thankfully we already had the wine. My credit card doesn't need to know.

DeeDee

Midday Update...

 Baygirl went into the OR at about 6:30 AM, and is still there as of 12:40 PM.  She is expected to be there for another hour or so.

As far as we know, she is doing well.  She'll be in recovery for at least 3-4 hours after she gets out of the OR. We can't see her until after THAT.

Citygirl is hanging out with me here, and once Babygirl is out of the OR we plan to walk around the corner for some Lebanese food.  

We have snacks. There is a coffee shop.  And helplessness.  And hopefulness.  

Thanks for holding us all in your thoughts and prayers. 

DeeDee

I REALLY Miss CHOP....

 I miss, terribly, the access I had for Babygirl when she was a pediatric patient. Because she is an adult, my access to her (and my ability to be a support to her) are MUCH more limited.

That being said....

Babygirl was sent for dialysis about midnight.  I was no allowed in dialysis with her, and after she was gone was informed that i couldn't stay in her room because she wasn't there.  Bye-bye, no idea when she is going in for surgery in the morning, kidney is still in transit, see ya at 8 when visiting hours open back up. 

Well, duck.

There were no social workers who would contact the local hotels to confirm that I qualify for the hospital discount. My first call to a hotel got me in for tonight but they can't keep me for the 5 days I'm likely to need to be here.

I got a call about 6:30 that Babygirl is on her way to the OR.  I didn't have a chance to talk to her.  I still can't go in until 8.  I don't know where I'm staying tonight.  I want MY mommy. 

To answer your questions:

The donor is deceased. We would have had many weeks notice for a living donor.

Yes, this was fast, both in the sense that she was only listed for about 18 months, and in the sense that we had very little warning.  The lack of warning has to do with the fact that when someone dies and donates, there is a rapidly ticking clock on the length of time those organs remain viable. 

The short wait is more complicated.  The average wait is 3-5 years for an adult organ recipient.  However, ones place on the list is multifactorial.  Babygirl was placed on the top of the list, not just locally, but NATIONALLY.  And again, the reasons for that placement are complicated. 

The first and most important reason is that she has a (partially) live donor kidney already in her body.  Her immune system is systematically killing that kidney, but it has had some residual function: She still produces urine, potassium is apparently being cleared. But she has a gazillion antibodies in her body working to kill that sucker, and those same antibodies will go to town on any kidney that doesn't match ALMOST EXACTLY to her current situation. She is young, healthy and needs a kidney that will last a long time, so preferably a young donor.  The odds of finding such as kidney are about 1:10,000. But because the match is so difficult, she was at the top of the list, all lists, so that if that 1:10,00 kidney turned up by some miracle, it would bypass everybody else on the list and go directly to her, since another kidney like that might take years to find. 

This kidney is a GOOD match.  Donor her age, size, and tissue type.  So here we are. 

DeeDee

Here We Go Again.....

 I had a lovely vacation, thank you.  Today, I woke up, had coffee, and went kayaking. Breakfast was yogurt parfait, and then we packed up and checked out, loading all of the wine purchased during the week into my SIL's SUV.  

Then, at 11 AM, we had a 10-wine blind tasting. At noon, bourbon cocktails, followed by a 4-course lunch with a wine paired for each.  

At 3 we bade a tearful goodbye to all our vacation companions and hit the road. 

About 10 minutes in, I got a message from Babygirl: "Might have an offer."  I called her, and she told me she was on standby for a new kidney. 

Well.  At this point I am closer to the transplant center than to home. I'm also not safe to drive.  My SIL is willing to make a U-turn, and we have a good friend who will drop all and grab babygirl and run, but we have no real confirmation yet that the kidney is hers.

We grab coffee and arrive home.  My SIL leaves, and within another 10 minutes we get the call: It's yours, let's find a bed for you while you get on the road. 

I had to dump a suitcase full of dirty clothes and hope to heaven that I have enough clean clothes to get me through a few MORE days out of town.

We are here at UR Hospital, checked in. She will need dialysis before the surgery, and she is scheduled in the morning.

Thank you for all of your ongoing prayers and support. I'll update as I can.

DeeDee

No Pressure....

 I'm pretty sure that most of you are already aware that dialysis is not a fun game.  But in case you weren't completely convinced of this:

Part of homeostasis is the management of blood pressure.  Normal is a range, with 120/70 typically being a happy number.   My dad's pressure typically ran 90/50ish, and it never bothered him at all (although given the number of times he traumatized his body with power tools, this blood pressure frequently traumatized his ER team). I often tell patients that there is no such thing as blood pressure that is too low unless it is causing symptoms. 

High blood pressure is one of the top three reasons that people end up on dialysis.  Keeping blood pressure under control is a huge part of the dialysis regimen. Abnormally (symptomatic) low blood pressure is typically triggered by blood loss, dehydration, other fluid shifts or autonomic dysfunction (a sadly increasingly common issue in Long Covid patients). 

Dialysis is all about shifting fluids and electrolytes from on place to another.  So symptomatic hypotension (low pressure) is a common occurrence. When hemodialysis is being done at a center, there are people there to immediately respond to this issue. They can add fluid, or reposition the patient to improve the pressure issues. 

Oh, yes.  And hypotension symptoms? Sweating. Nausea. Loss of consciousness (syncope is the fancy medical term for fainting). 

Babygirl is doing her hemodialysis at home, unsupervised and frequently alone. Hypotension is an issue for her on a fairly regular basis. Her chair is designed with a bar above her head that can be grabbed as soon as symptoms appear.  Pulling the bar immediately tips the chair into Trendelenburg position - rapidly taking her from sitting in a normal recliner to almost upside down. Usually this is followed by about 10 minutes of retching and vomiting as her system struggles to pull out of the hypotension. 

Whild all this is going on she is supposed to decide whether to add additional fluid (which is, of course, not preferred when you are in the process of mechanically REMOVING the excess fluid from your body, or whether to terminate dialysis early (also not preferred for obvious reasons), or whether to just ride it out. This brings up the question: How long should you hover on the brink of consciousness trying to make this type of decision?

Thus far she has not lost consciousness during any of these episodes.  She has had to terminate her sessions early a few times, usually 30-45 minutes off of a four-hour session, which means that she has lost about 15% of the time needed to clean toxins out of her blood. 

And to add a bit of heart-stopping silliness to this entire story, Babygirl is SHORT.  Her chair is a one-size-fits-most contraption. That bar she has to grab to go upside down has got to be grabbed AGAIN to get her right side up.  The challenge is to reach above your head to the BACK of the chair, grab the bar with ONE hand (since the other has needles sticking out of your arteries), pull the bar and attempt a sit-up WITH YOUR ARM ABOVE YOUR HEAD from a head-down-toes-up position. The leverage is all wrong for her body size, and she ends up staying upside down longer than she needs to, and from that position she cannot easily reach the buttons that allow her to power down the machine. She looks a bit like a hooked fish during this process. I've been there to rescue her a few times, but I'm not always home.

This situation terrifies me more than a little. 

I've given it some thought.  I'm working on adding a strap to the bar so she can pull it from the front of the chair. This means that she will have to be mindful to place the strap within reach before she sets up.

We'll see how it goes.

DeeDee

It's a Fine Balance.....

Homeostasis.  

It's the balancing act your body does every minute of the day to keep you alive, basically the baseline status quo.  

Acid/base balance. Potassium/sodium/calcium levels. Hormone regulation.

And fluids.  To maintain "status quo" the amount of fluid IN must equal the amount of fluid OUT. Everybody understands the "fluid in" part.  The "fluid out" is more complicated.  

Fluids exit the body in two ways:

1) Sensible losses.  This is the "out" that you are aware of, like urine, tears, and sweat.

2) Insensible losses. This is the "out" that you generally don't notice, like exhaling, bowel movements and, well, sweat. 

Insensible losses can dramatically increase with acute illness. Coughing blows an entire lungful of water out. Fever increases respiratory rate to do the same. 

All of the other balances are similar, and much of homeostasis is managed by the kidneys. 

Babygirl has been fortunate in a way.  Her native kidneys produced a lot of urine despite their failure, and Jorge's kidney has been continuing to get rid of water and potassium. Before her first transplant, we had to collect a 24 hour urine sample.  Her bottle was nearly full, but the other kids, barely any.  The difference this makes in terms of quality of life is dramatic.  REALLY dramatic.  Imagine being allowed only 2 cups of liquid a day, or less. Imagine trying to figure out if you are sweating enough to justify a few extra sips of water on a hot day. Imagine that you always need to remember that fruit, veggies, and other foods have variable water content that have to be considered in the fluid balance.

A gallon of water weighs 8 pounds.  Imagine THAT settling into your legs and feet because your kidneys are not getting rid of any of what you take in. Many if not most of the people on dialysis do not urinate AT ALL. 

Babygirl is VERY self-aware. And she is VERY careful.  She recently found a cute little pink mug at the thrift store.  It took me a while to realize that it wasn't the cute part or the pink part that attracted her to it. It was the "little" part.  It's easier for her to go easy on the fluids if she has smaller servings, smaller containers. 

She did a 24 hour collection recently.  I noticed that the amount of fluid isn't what it was a year ago, perhaps down by half. I've noticed she hasn't been running to the bathroom as often while we are out-and-about. This gradual decline in what remains of the transplanted kidney's function will ultimately have a big impact on her quality of life. 

Fortunately, home dialysis can be done every day if needed to get the retained fluid out.  Unfortunately, home dialysis takes an hour for set up/clean up and 4 hours to run. Add in 1-2 hours a week to move heavy supplies in, and sort things out. Patients on home hemodialysis need to stay awake the entire time, so unlike peritoneal dialysis, one cannot sleep through it. Babygirl looked at me the other day and said, "This feels like a full time job."

Five hours daily at 4 days a week currently? Grimly time consuming but not quite full time.  Add three additional days and it will be.

DeeDee

Collections....

Well, no matter how bad things have been in the Great Insurance Wars of 2022, we have hit a new low.

Babygirl hitched a ride to my office a couple of days ago so she could walk to the dialysis center to drop of a box of, well, blood. Not the same as the last one, mind you. A whole different thing.  Or maybe it was dialysate, to make sure the water doesn't have, say, arsenic.  I don't know.

However, she spent half an hour in my office playing with her phone until it was time to go, which was how I happened to overhear The Phone Call.

I could tell that it had something to do with a bill.  After a minute I asked her to put it on speakerphone, which she gratefully did.  To be fair, I missed the caller's identity.  But he was asking for payment of $1600 toward her emergency room physician's bill from 12/31/21.  You know, the day she almost died, what, nearly 15 months ago? 

He was offering to help her set up nifty $25/month payment plan. 

At this point I took the phone.  Apparently only $455 of this bill had been paid by her insurance, so she owed the rest.

Except she DOESN'T.  She has Medicare and Medicaid.  It is illegal for them to sent her a bill for the balance, even if the balance wasn't fully covered. I pointed this out to him, strongly, and let him know I'd be checking with her insurance to see who FUBAR'd what THIS time.  (Maybe that should be DUBAR. I don't know.)

Yesterday I spent 65 minutes on hold with my insurance.  They paid in July, the $455.  They say the bill was resubmitted in September and rejected.  Well.

So I spent half an hour on the phone today with an honestly delightful representative of the ER doctor's billing office.  Turns out they NEVER call, and the bill was in collections. They had my BC/BS listed TWICE, once as BC/BS and once as SmartHealth (the biggest oxymoron in history, but it is our flavor of BC/BS, with the same exact ID#). Once the second BC/BS (same as the first, of course) rejected the bill, they failed to rebill to Medicare and Medicaid.  

She could see where I'd called before, given the correct information, and that the actual patient screen was not updated to match.  Yes, she agreed, it is not only illegal to bill her, but also illegal to send her to collections. 

"Ignore collections, we'll have it rescinded 'after a review.' "

I'm pretty sure she knew what she was talking about. Not so ducking confident about the reviewers.

DeeDee

So Much Water....

Super Bowl Sunday.  While the technologically challenged among us are still trying to figure out how to access this years' game (yeah, last year we used Peacock. This year, not so much LOL), I'm thinking back to the 2012 game.  I have no idea who played, who won, or what the best ad was.  I only know that we were finally out of the ICU, off dialysis, and on the road to what we thought would be a normal life. 

There's been a lot of water under the bridge since then.

The kidneyversary was last week.  February is full of things to remember. My grandson's birthday, a host of other family days. The anniversary of Mom's death. Remembering Jorge and his family, their loss and their gift to us. 

I still, more than a year after the loss of the kidney, can't think about that day like I did the previous 9 years.  

And yet, that gift, however temporary, DID buy us a more normal life. Beach trips, hiking, camping, Complete freedom from the dialysis machines. Every moment of freedom, every unconscious lack of worry, ALL of it, from that gift given at great cost.  

I remain incredibly grateful, endlessly grateful for all of those gifts.  None of the struggles of those years outweigh that gift. 

Gratitude remains the best defense against that ducking squirrel.

DeeDee.

Letting Her Grow Up.......

 Babygirl is 23.  

At 23, I had 2 college degrees, and had been working in cancer research for 2 years, actively prepping for medical school.  The sickest I had ever been my life was a case of strep throat in 5th grade, and the Russian Flu in my sophomore year. I almost never missed school. 

I have no real way to relate to her life. She's missed YEARS of school. She can't see well enough to learn to drive. She's tied to a dialysis machine at home for 4-5 hours 4 days a week, unless some frustrating SNAFU happens that makes her have to start the hour-long set up over, or delay for another day (which makes her feel like crap since she has to let all the toxins build up in her system for an extra day). 

I've been her mom since she was 2. I've been her support system since she was 11. 

I've been quietly trying to let her take on as much of own her care as has been appropriate at any given time.  She's been in charge of sorting her medications forever. She  takes care of ordering her medications, mostly. I'm no longer able to access her medical portal. She communicates with them on her own (I confess I miss the access. I have to search my soul and admit that perhaps I miss the control). 

Letting go of the details is extremely difficult for me. So when the details fall behind, like late refills and, well, unmailed blood, I want to snatch it all back and make her 11 again. Because if I do, then....what exactly?

This is one more run of magical thinking.  This entire last year has been...challenging. Difficult. Horrible. Exhausting.  And the squirrel that runs rampant inside my head periodically stops and yells at me about how I should have somehow prevented the transplant failure.  Paid better attention. Noticed how quickly she was getting sick. Ridden in on some kind of ducking flying carpet and kept us from landing in this quagmire. 

Two good friends have died of kidney disease in the last few months, and a third has had a kidney transplant. Of the ones who died, one opted to not do dialysis. One opted to do it.  The one who had the transplant is struggling through the horrors of the first year:  Infections, hair loss, fatigue. Granted, these astonishing women were/are all older than me, each bravely fighting kidney disease in her own way. And ultimately, advanced age notwithstanding, proved that this disease is the biggest bitch there is. 

In the end, nothing I do is going to win this. She's the fighter.  In all this time, she's done whatever she needed to do and complained damn little about it - certainly far less than I have, and do.  But....in the end....

Nothing SHE does is going to win this either. Life expectancy for a 30 year old with end stage renal disease on dialysis is about 15 years. Successful live donor transplant lasts about 25 years, and as we know, deceased donor transplants 10-15 years, typically. Clearly, statistics do not apply to individuals. Even more clearly, I have no access to a crystal ball. 

Borrowing trouble before it's due is as pernicious as magical thinking. In either case, I'm making myself anxious and crazy to no avail. Taking note of this does not, in any way, kill the ducking squirrel. 

DeeDee

Boxes of Blood.....

There is already a post about this.  But this is a different box.

Babygirl is supposed to draw her own blood during dialysis to follow her potassium and phosphorus levels, among other things. She is supposed to draw additional specimens to send to Rochester.  This has to be done every month, and the tubes are supposed to get boxed and FedEx'd to the tissue typing lab. Every. Month.

Without those samples they can't crossmatch her tissues and antibodies to an incoming kidney to confirm a match.  So if the blood isn't available, she could miss opportunities for transplant.

I really can't recall the last time we were in Rochester, but that is the last time that one of these specimens went to the lab. It's been.....months.

It isn't that Babygirl hasn't tried.  Our local hospital used to do this when she was listed at CHOP.  And CHOP (have I said how much I MISS CHOP??) provided us with a labeled mailing box for the hospital to use, along with an appropriately coded order.

All of that is missing. We have boxes, with no labels for the blood tubes and no mailing labels. The first order wasn't signed by her provider. Now we have a signed order but no codes. 

We got as far as having the blood tubes, hand labeled with Babygirl's name and date of birth. No order was needed as she drew it herself.  Per the new instructions from the dialysis team, we drove to the local FedEx office. 

This is the story they told us:  "We can't take that here because of the warning on the bottom." It is clearly labeled as a biologic specimen.  According to them, people at the store "lack the necessary training to handle that." They also would not print a label for it so we could put it in a drop box (which is apparently emptied by people who have the "necessary training"?). Not one word of that made any sense to me.

They told us to go online and get a label, email it to them, and then they would print it for us. We already travelled from our town to the next one over. So they want us to go BACK home, email them, and go BACK to them, and then back home?  

I went online. One full frustrating hour later (much of it spent trying to find a contact number and go through the endless "if A/press B" menus to get to an actual person), I finally downloaded a file for the label and emailed it to MYSELF so I can print it at the office and get the sucker mailed. Then I can stuff it into a drop box, which is thankfully located in my own neighborhood.

All home improvement projects have what I call a "swearing and screaming phase." Keeping your kid on the transplant list by mailing 2 tubes of blood to her hospital should NOT have that phase, but I'll admit that there was crying in addition. 

Just....why?

DeeDee

Did You Remember....

"Did you remember to bring the box for the blood?" "I don't think we need it."

I'm sure that every family with chronically ill members say things that sound, well, peculiar in other settings. 

Today Babygirl and I left the house for the first time in over a week.  I'd have stayed in, but until Babygirl learns to drive, options are limited. She has to draw her own blood periodically before and after dialysis (okay, peculiar statement #2). We have a centrifuge to process this, and then it goes into the fridge until we can get it to a lab. She drew the blood yesterday after 5.  We had 5 tubes of blood in a cup on the top shelf for about 20 hours, until we finally worked up the energy to leave (I mean, changing into cleaner pajamas seemed important even if I wasn't getting out of the car). 

The cup went out the door in Babygirl's hand.  The mailer box remained on the table.  I grabbed it, and made her take it into the lab with her. She came back without it, so I assume I was correct about the box.

All beside the point. There is so much of this stuff. SO much. 

DeeDee

A Missed Celebration........

 In my office, only 2 of us who have been present since the pandemic started have escaped contagion, me and one of the front desk staff.  

I didn't catch Covid from Babygirl last January despite being face-to-vomiting-face with her the entire time she was incubating. I was, however, masked for almost the entire event.

This time? The masks went on AFTER the diagnosis.  And here we are, staring down a positive test.

My sincere congrats to the last man standing. 

It isn't the sickest I've ever been. That honor goes to the Russian Flu while I was in college. And thankfully, the guy with the ballpeen hammer in my head has stopped banging around, for the most part. But those losers with the coshes who keep smacking me in calves and shoulder blades need to STAND DOWN. 

Also not a huge fan of alternating between shivering and sweating.

I'm pretty sure this level of fatigue and breathlessness going up and down a flight of stairs should more be associated with mountain climbing.

On the plus side, Babygirl isn't running fevers anymore.  She was up to cooking dinner yesterday, although neither of us could taste it. We are both sleeping anywhere from 1-3 hours for every hour of activity (which could be just unloading the dishwasher or reading a book).

So I'm on Covid Furlough until at least Tuesday, or until the respiratory symptoms clear.  If the number of tissues overflowing every wastebasket in the house are any indication, this could take a minute. 

DeeDee

PS The saddest part of this is that I was out sick on National Rubber Ducky Day.  And I had planned SUCH a celebration.