It's Just the 'Flu......

 Holidays are crazy busy.  Visits too and from grandkids and kids and more kids....It is very much like living inside a Petri dish.

The Family Group Chat started filling up with reports:  Influenza B, asthma flares, hand-foot-and-mouth disease.  We do our best to stay away from it all but.....Family must Gather.

Christmas Eve morning Curlygirl had a fever, 100.4 or something like it.  She had to soldier on, like any mom at Christmas. There are a thousand things to do.  Next morning, she asked if we were coming over.  She hadn't had a fever in over 24 hours. We went.  It was wonderfully chaotic.  Gifts opened, Santa's gifts exclaimed over, an amazing abundance of joy and laughter. Curlygirl got a ton of gifts from Bean's daddy, things that he had written down in his phone's notes every time during the year that he saw her wanting something specific.  As far as I could tell he couldn't possibly have missed anything.  I am incredibly impressed. 

By Sunday Babygirl wasn't feeling great. She skipped Christmas Part II and I went to Bella's house to party with a different set of grands.  It crossed my mind that picking up a Covid/Flu test pack wouldn't be the worst idea.  Somewhere between the thought and the drive home, I completely forgot about it.

When I got home there was a thermometer out on the kitchen counter. 

The sinking feeling I got when I saw that defies description.  Historically fevers have been accompanied by ambulance rides and long hospital stays.  

I went to check on her, and although she was coughing, she didn't have a fever, so I went to bed, trusting her to come get me if she needed me.

When I woke up I went to check on her just as she was pulling the thermometer out of her mouth. 103.3 degrees. Well, that's just ducky.

Short of driving a few miles to a 24 hour pharmacy I have no access to in-home testing. And honestly, her lips were dry and cracking and she really didn't look at all well.

I told her I could go pick up tests and hope that the on-call doc would send in whatever was appropriate, or we could just skip the lost time and go the the ED.  She'd almost rather poke out her own eye with an icepick than to go to a hospital, but she wisely took the option.  

Her history, temperature, shortness of breath and rapid heart rate bumped her to the front of the line.Triage went off to hunt for a room and she had labs, IV fluids and x-rays in progress within less than half an hour.  It took a minute for the previous occupants' location to update because there were some confused people looking for him, including the lab tech. She was carrying 2 tubes, not even close to what  I knew Babygirl was going to need.  She came back a minute later with 2 blood culture containers and more than half a dozen tubes. One of the things we want to avoid is "I need to add this extra test now that I have the results of first set." 

Babygirl lay on her back, covered her eyes with a damp cloth and didn't move for 3 hours.  She was clearly uncomfortable and honestly, not unconscious exactly but definitely not .... present.

2 Liters of fluid. Tylenol. Test results: Dehydration. Influenza A. Kidney okay but dry. Liver is cranky, back off on the Tylenol. WTH - not even the same thing as the grands had at all!

We were there a couple of extra hours as the ER doc reached out to the transplant team to find out if she gets the OLD influenza medication or the NEW one, or if either would help much given the status of her immune system.  Ultimately a prescription was sent in for the older medication as there isn't a lot of data for people like her with the newer one.  

We went home and she went to bed for the rest of the afternoon.  She had a lot of nausea, so I had to remind her to drink anyway.

And to answer your next question:  She had this years' flu shot November 3rd, plenty of time for it to work as well as it was going to work.  Sometimes the flu shot has the wrong strain. Sometimes her immune system just doesn't respond to vaccines.

But it's just the flu, right?  

I haven't looked at this years' stats, honestly, but one way you can tell how bad Influenza is in any given season is by the number of pediatric deaths. Yeah, children.  Typically in New York State, if I recall correctly, there are about 8-12 pediatric deaths from Influenza annually.  2020 was unusual in that there were none because of remote learning and masking. 

But it's never "just the 'flu" for people like Babygirl.  Influenza is primarily a lung disease, and the damage it does frequently leads to pneumonia in vulnerable populations:  Elderly, children, and immunocompromised. Although the virus is being treated we still need to be vigilant about new symptoms for a couple of weeks.

I felt like crap most of today.  I asked Bella to bring me a Covid/flu test and I'm negative. I suspect I'm just tired.

Many people have had rough times in 2025.  For me, though, it has been joyful, free, and peaceful - one of the best years I've had in a long time. I'm grateful to be reminded of fragility of all of those things.  I am grateful to know that despite the wobbles, they are and remain the bedrock of my life.  

I am, as always, grateful for the prayers of friends and family, always present,

DeeDee

Disease Progression.....

 Most of us have no difficulty accepting that people can have more than one thing wrong with them at a time.  Over the years, Babygirl has had the kidney failure/transplant thing.  The high blood pressure thing (which, oddly, went away for no good reason!). The migraine thing. The endless vomiting thing.

Along the way there was one MORE little thing.  She was diagnosed with Type II diabetes in her early teens.

While this can lead to kidney issues, it is NOT managed by the kidney docs.  They do, however, include a random blood sugar measurement with her routine labs.  They alerted us:  Sugar is high. See an endocrinologist.

The long-term monitoring measurement for diabetes is HbA1c (glycosilated hemoglobin:  In simple terms, sugar gets into red blood cells and has a chemical reaction with the hemoglobin (the red stuff lol) and cannot get OUT of the red cells, so measuring it gives a solid estimate of average sugar levels over the past 3 months). 

Normal A1c is 5 or so.  At 5.8 -6.3: Prediabetes.  6.4 or more on 2 different measurements: Diabetes.  Typically she runs at about 6.8, and for over 10 years has not required a single medication for this. 

Her most recent A1c is 14.5.  Average daily sugars can be calculated by these numbers. At 6.8, average sugar is 148.  At 14.5, the average is 369.  

As always, God bless our primary doctor. We saw him at 6:30 Monday morning. He looked it all over, sent in a prescriptin for insulin and testing supplies, and put in a referral to endocrinology.  I expected a wait.  One of our busiest endocrinologists just retired, and there are LINES. 

He must have put in a call. When I went to the pharmacy on Wednesday there was a grocery bag of stuff.  I didn't realize until I got home that it was not just HIS stuff, but also endocrine's.  She got in in less than 2 days, and, one week later, has already had a follow up visit. 

We had a visit with nephrology yesterday, and all is well with the kidney.  Continue monthly blood work and see you in 6 months.

Babygirl is now on up to 5 shots of insulin daily. She has glucose monitor on her arm that does continous monitory so she doesn't need to poke her fingers all of the time.  Depending on how things go, they will likely consider an insulin pump at her visit in February.  

Since diabetes in is the #1 cause of kidney failure in this country (although not in her case), there are millions of people living this life.  Millions of people who are on dialysis, transplant lists, or who have had transplants for whom this life is just another random Tuesday. 

Babygirl is, as always, doing what needs doing and learning what needs without complaint. She is built of stern stuff.  She has boatloads of medical trauma, and she acknowledges it and still Does The Things.

I hate this.  I am allowed to HATE this, not that it helps in any way. 

DeeDee

Snowballing......

 In December, our office installed a new electronic medical record system. It was overdue, necessary, and entirely complicated.  New screen patterns created massive migraines and eyestrain. 

My life since then, in roughly chronological order: 

I went to the family doc (step one).  He changed some meds and referred me to a new neurologist (step two), as I've retired 3 of them so far. I was doing better so the new doc agreed with the changes, but recommended an updated MRI.

We did our amazing Australia trip (which I am still day-to-day living on!), and re-entered life.  I kept my already-scheduled annual cardiology appointment (step one).  "Any concerning symptoms?"  Well, doc, I did a 3 hour climb to the top of a massive bridge in Australia, and was fine except that at the very top I had chest pain and difficulty breathing that lasted just long enough that I was wondering if they could get a helicopter up there...."  Oh. "You need a stress test."  I'm pretty sure that no amount of jogging on a treadmill is going to reproduce those symptoms, but, okay I guess. 

One of the nose pads on my glasses fell off on a Friday.  I crafted a temporary replacement with a glue gun, but schedule a visit to the eye doctor (step one), since it's been a minute.  It turns out that I have almost NO distance vision in my right eye.  This moves me up the food chain to the opthalmologist (step two), who then schedules me for cataract surgery (steps 3 and 4). And just like that! Active Senior to Little Old Lady LOL. Turns out the eyestrain wasn't the new computer system.

The stress test comes (step two). ("You needed that for cataract surgery??" Well, no, it's just a timing issue.)  I'm injected with radioactive stuff, run the treadmill, get MORE radioactive stuff, and pass.  So far, this is the first stop-at-the-second-step event this year.

I get my routine mammogram.  For the first time EVER I get the "We see something we can't explain and you need to come back in." I can't feel ANYTHING in the area of concern, but... I hand my office manager yet another (and now entirely on-brand) request for an afternoon off. 

At this point, I'm laughing, like, "Can any of the routine stuff just be simple?" I'm not feeling particularly worried about it all, and I have solidly learned over the past 14 years that worrying about "maybes" is a zero sum game. But an unrelated random call to my cousin the next day reveals that she has melanoma. And, unrelated but discovered during the workup, breast cancer. 

Cue the snowball. 

I finally have the MRI, step 3 of the neurology path. On the paperwork for that, there is a question to the effect of "Do you have or does anyone suspect you have cancer? 

Start that snowball down the mountain.

My brain entirely stopped, as my Schrodinger's mammogram report flashes through my head. Do I? Don't I? The unexpectedness of the question and the now-I-have-family-history fun fact collided HARD, loading up all of the hamster wheels in my head, adding a layer of what-if-the-migraines-aren't-migraines?? to the mix. 

Watch that snowball ROLLING. 

The MRI was fine. My brain is older, but otherwise okay.  No visible hamster wheels. The migraines are just migraines. See you in 6 months. The only remaining issue is getting the new medication correctly prescribed, but, hey. 

Well.

I get to the step-two boob follow up appointment, and they do a "compression view" of my left nipple.  Mammos are uncomfortable to start with, but this was....breathtaking.  The ultrasound that followed was also somewhat intense.  The nurse practitioner comes in to do a breast exam. "Have you had any breast pain?" "Not until today, thanks."

All the exams were fine.  My ongoing weight loss apparently changed the appearance of the test but there were no real problems. See you in a year.

Now...I have gotten a reminder that I am due for a colonoscopy.  Actually, that came in during Snowball Week. I took a couple of days to catch up on sleep, because I DID lose some sleep there, and got a referral placed. 

But DAMN, lets let that snowball run out of energy before we set off the next avalanche. 

DeeDee

PS This all took from before Christmas until almost Easter to happen. And I still haven't had the cataract surgeries. And now that I know I can't see, the fact that I can't is pissing me off.

PPS Because you all love her: Babygirl is fine.  No one but me had chest pain on the bridge. But I was the only one without jellylegs on the descent.

PPPS Prayers for my cousin. 

I Bet on the Bay Mare.....

 Babygirl and I repainted the downstairs of the house last year.  Furniture rearranged.  And we bought each other a frame TV for Christmas (honestly, not one other gift, not even Reeses trees for the stockings).  It's lovely, and we can either set it to some piece of art or have it rotate through seasonal artwork, which is what it has been doing since Thanksgiving.

This morning the art became more....springy, and I was suddenly looking into the eyes of a bay horse with a white star on its forehead.

When I was about 14, we moved from a village to the country.  Among the many changes?  I finally got the horse that little girls spend their lives dreaming about. She was a miscellaneous brown horse, in a little rough condition.  I fed her up, treated the saddle sores with twice daily Epsom salts, and brushed out the winter fur.  It turned out that under all of that, she was an amazing bay (red) with a white star and socks.  

The horse in the picture clearly was not her, and I honestly don't think I have a photo of her.  But....living in the country with a horse?  There were a couple of other girls in the area that had horses, and I made friends with people I might not otherwise have met.  

That picture took me back to a far less complicated life.  I spent hours riding with Becky all through the woods and fields within a 5 mile radius of home. Becky and I loved each other, our horses, and our lives.  We had a lot in common: Our dads were strict and somewhat frightening. Our moms became friends. We did sleepovers and helped each other with chores. My horse was terrified of water and hers liked to swim. We took falls, got concussed, and kept on riding regardless of season or weather.

When I went away to college, the horse was sold. I still hope she was treated well, but there was a little girl involved, so....

The sight of that picture made me cry. I miss it all: My home, my parents, my younger self, the simplicity of it all, and Becky. She and I lost touch until the miracle of the internet made us intersect.  We admire each others grandchildren and observe each others lives.

We remain more-or-less quiet about how different we are from each other. We share a blessed history, a million experiences, and a memory of years of close and loving friendship.  But we are currently on completely opposite poles of the political and scientific spectrum. We haven't had a live conversation in over 30 years. A deep and abiding love for each other keeps us respectful, I think. 

But in addition to childhood loves and memories,  I miss the world in which there was a time when a discussion of Carter vs Ford (which I think really never came up between us as high school students - I voted for Carter and she was too young to vote) would have been an intellectual exercise with intersectional agreements and not an area with almost no common ground at all. 

I miss the fact that we as a population could have friends in both parties without tiptoeing around the volitility and vitriol, or in fact, even noticing that someone voted differently. 

I am certain that different life experiences lead us down different paths.  Understanding that we can have similar upbringings and radically different outlooks is entirely intuitive. Why are we still friends? Because if we all give up on what connects us, the country will never heal. If we cannot discuss what unites us, we will never overcome what divides us.  If one half of the country continues to believe that the other half has lost its ever-ducking-mind, well.....

Sometimes what holds us together is betting on the bay mare and a pinto pony. 

I'm know she prays for me. I pray for her as well.  And we both pray for our country.

DeeDee

Don't Say No.....

 We had 3 grands at the house today from 6:30 AM until 3:30 PM.  This group is the gang I refer to as "feral." Their mother thinks that this title is both true, and funny.  Ranging in age from 8-13, they are funny, sweet, and most likely to destroy the entire house.

Each of them wanted to make a potholder. I have 2 looms and 3 kids, and they have, thus far, never successfully completed even one, but we have time, so, yes, of course! And the one with no loom? A game of Othelo. I beat the pants off of him. They all know that if they beat me at a game, they have EARNED it. No Mercy Rule here LOL. 

Saturday is farmer's market and grocery day.  They did 2 rounds of rock/paper/scissors to determine who would be stuck in the middle seat. Great excitement to the winner.

"Can we have coffee?" Well, I didn't say NO, exactly, but I did convince them to try vanilla chai, which made everybody happy. Since the farmer's market is next to the botanical gardens, I turned them loose with instructions to make sure Every Single Path had footprints on it.

Can we climb the hill behind Aldi?  Well, it's one of those cut-straight-up-the-side-of-the-mountain things that typically has large electric line towers.  Death risk is small, injury risk modest. Sure! Who wants to try it?  The younger 2 went for it.  They were game but ill-prepared.  Sneakers, ice water, no gloves?  They did better overall than I expected. I think they managed about a 50 foot vertical gain before they felt the cold hands weren't worth it.  They got colder and wetter on the way down, but did not complain about it.

I did not participate, in case you wondered. I supervised.

Coming home involved a pre-planned small gingerbread house assembly.  One of the 3 succeeded. One asked, about 2 minutes in, "Can I just eat the gingerbread?"  Of course!  

Cookies were made and eaten. Babygirl supervised all of that. I did all of the dishes.  

"Grandma, can I eat a jalapeno pepper?"  Absolutely, it that is what you want. (That was NOT, it turns out, what they wanted, but...lesson learned?)

The tree was assembled and decorated. My porch has lights.  We are down any number of small brokent things, none of any value or significance. Joyful noises were made. 

Inevitably it go to be a bit much, so I sent everybody outdoors to run up and down the street 15 times. Bean had arrived by this time, and although she was dressed in what looked like an Easter outfit, she gamely went out to run as well. 

We did say "no" to staying for dinner.  My ears were ringing from the noise by that time.

But overall?  I like not being the one to say no.  The insanity has a flavor to it, a beloved scent. It's the smell and taste of memories.  

DeeDee

PS They are all coming back again tomorrow while Mom works.  Pray for us. 

Covid 2.0

 This is the third time Babygirl has had Covid.  In no case did she become Very Sick, although the first time it cost what little hope we had of rescuing the first transplant from disaster.

It's my second run.  Both times I've caught it from Babygirl after she went out with Curlygirl to do something somewhere.  Neither time, thankfully, did Curlygirl get it.  Her own Covid 1.0 is still wreaking havoc on her, almost 3 years down the line. 

Last time I was pretty sick and the recovery took forever, but I started symptoms on a Friday night (the family has a theme I think) and didn't call my doc for help until Monday. By then it was a bit too late to start an antiviral effectively, so the disease did what it does.

This time?

Well, to continue the WTD line from my experience with Ana's on call people?

I called my doc Tuesday in the morning. He is himself an entirely faithful sort who never leaves a message unanswered, so when it go to be pretty late in the afternoon, I put in a second call.  I was on hold for an atypically long time, about 20 minutes.  When someone picked up, I asked about my message status.  She found it and then asked,  "Who is your doctor?" I told her and she said, "He is not here." "Well, where is he?" Her answer was a polite but confusing, "How would I know?"

It turns out that he message was inadvertantly sent to another office 30 miles away from my doc.  And how did I end up talking to that distant office when I dialed MY doc's number?? We got disconnected during the call.  I double checked the number, which I had pulled from my contacts. It was correct, so, what....?

I called again and got an almost immediate answer at the correct office. Mystification all around, but hey, that's for IT to figure out and not my problem to call them. My doc is in office but leaving town SOON so she promised to get his nurse right away and have her call me. 

It turns out that Paxlovid doesn't like MY medications either, so I also got the Unicorn Drug.  Even though my pharmacy was open, I risked a higher co-payment by sending it to the pharmacy I knew had it.

I am blessed, truly, that I had no less than 4 people who asked if I needed them to go anywhere/get anything/do whatever.  I am MORE blessed that Curlygirl was feeling well enough to be one of them. She took a more than 20 mile round-trip journet from her home, to the phamacy to me.  The copayment, incidentally, was $0.

How am I feeling? Well, yesterday, I got up, made coffee and toast, consumed a little of each and took a nap from 8-10 AM.  I spent the rest of the entire day snoozing or watching stupid TV and was in bed asleep by 8 PM. It was an increase in activity from the day before.

Today I did the coffee/toast, picked up after myself and emptied the dishwasher, did a load of laundry and put on actual clothes. I walked Maisey less than half a mile with my lower abs (why?) screaming at me by the time we returned home.

I am pretty sure I'll be able to pay the bills, do another load of laundry and fill the dishwasher.  After that we'll see. 

Overall 2.0 is a much better experience than the first run. 

DeeDee

It's Always a Saturday.....

 When Citygirl was a toddler, ear infections were the thing for her.  Between germs from daycare, my walk-in and her dad's ER, she was a snot factory a great deal of the time. But ear infections always seemed to happen on a Saturday afternoon, or frequently in the late evening. Options for obtaining treatment were clearly limited, but to be fair the ER pre-covid was not typically as bad as it is now. 

Babygirl seems to have the same life plan.  The number of times that she has fallen ill on a weekend or a holiday is actually fairly astonishing.

Most recently she began with some cold symptoms Friday. The fever (which we ALWAYS have to do something about) began, of course, on Sunday.  

I had to run some errands, so I picked up a couple of packs of Covid tests.  She tested positive.

I put a call into the Transplant Team at 1:25 PM.  About 2:10 I called again, and was told that the "page just went out to the doctor a few minutes ago" and to give it more time.  I mean, what was the answering service doing for 45 minutes? I called a 3rd time at 3:05 PM.  The answering service was unable to determine if the doctor had actually received the page.  I mean, what the actual DUCK is going on here?

At 3:31 the doctor finally got back to me, since Babygirl was in bed asleep.  I told him that we had 2 basic problems:

1) Since she is acutely ill, should she keep her appointment in Rochester in the morning? I mean, nobody wants a Covid factory in a transplant center.

He gave the entirely sensible and why-didn't-I-think-of-it answer: Call them tomorrow and have them change it to virtual. Well, duh. I do that in my office all of the time!

2) Since her immune system is being deliberately trashed to keep the transplant alive, should she get an antiviral like Paxlovid?  The doctor waffled on that for a moment, checked he medication list and recommended Lagevrio instead, because it doesn't interfere with her medications.  "Good, good - could you send that to our pharmacy?"

Well, apparently although he knows what SHOULD be used he won't call it in because that's family practice's job, since they treat Covid regularly, and he himself has never written a prescription for it.

WHAT the ACTUAL DUCK. 

So I called our doctor at 3:41, knowing it was about a 30-1 chance that he'd be the on-call.  I knew that he'd phone it in, but an on-call doc who has never met her would either call it in or send us to the ED. We got the call at 4:01 PM.

It was not our doc, but the on-call guy took option 3.  "Why can't she have the Paxlovid?" I explained the drug interaction, and he said, "Let me do some research and call you back." 

Well, that's entirely sensible but not helpful for my level of anxiety in this moment. 

While I waited I called the 2 local 24 hour pharmacies to see if either of them had a supply of this Unicorn Drug. The farthest one had two full doses. It seemed safer than the closer one that only had one bottle. 

The oncall doc called back at 4:12 and told me that to use the Paxlovid "the math is just to complicated." Well, alrighty, then.  He did call in the Lagevrio, and we started it Sunday evening.

To add some extra flavor to all this: I took Monday off to go Rochester, but instead I called at 8 AM to reschedule her to video. It turns out the Monday appointment had been cancelled, and replaced with an appointment LAST THURSDAY which we obviously missed. 

She's scheduled for a video visit on Wednesday.

Meanwhile, at about 1 AM today somebody drove an icepick into my left ear and filled my left nostril with snot.  COVID test was positive this morning. I called family practice at 8:32 AM.  I am still, at 3:12 PM, awaiting an answer.  I'm doing the recall now. 

DeeDee