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