Not Forgetting....

This morning was absolutely sparkling.  There was a waning moon at 3 AM, and it was -3 degrees.  Every snowflake in entire yard was glitter-bright.  That kind of beauty takes your breath away.  

There have been many, many moments in my life that have taken my breath away.  I personally prefer those moments to the ones that stop my heart.  There have been too many of those as well. Finding out that Babygirl needed dialysis and a kidney was a heart-stopper.  Hearing that there was a donor that matched was absolutely breathtaking.

Babygirl has two donor kidneys in her belly, and her two native kidneys are still living there as well.  We know the name of her first donor, Jorge.  14 years ago today he died, and his gift to her gave her 10 years of at least some semblance of childhood.  No dialysis, no nightly pain. Freedom. His family, 14 years later, undoubtedly struggles with this anniversary, and will forever.  

The death of that kidney in 2022 was...another heart stopper.  But my grief over that loss and the struggles Babygirl has had since then pale in comparison to their loss. 

I was up at 3 AM to take her to the airport so she could fly to California to visit Citygirl.  That freedom was a gift from another unknown donor, their family dealing with their loss in a different place and time. Those gifts give me the freedom to SEE the breathtaking; to live the joyful moments.  Freedom to enjoy simple things like the Farmer's Market on Saturdays, hikes in the Glen, and the idiocy of our dogs. 

Our freedom, like all freedoms, has come at a very high price. I think the best we can do with that is to LIVE.  Really, truly live. Let the grief flow when it must, and feel the joy when it comes:  See the beauty of every sunrise, sunset, and moonlight sparkle. 

Prayers, as always, for Jorge's family.

DeeDee 

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

Dancing With a Stranger.....

 I just came here to look at the Blog stats/readership.  I don't get a lot of visitors here generally because it's not as active a blog as it once was. But...somebody (or a few somebody's) is reading it, apparently from the beginning.  

Whoever you are, welcome aboard. 

I tend to open up and re-read the posts that get the most views, and DANG.... it was a walk through some hard times.  The heart does its best to heal and cover over the scars, but... they don't go away, really.  It hurts some to read again what it was like in those days.  It occurs to me that I was extremely fearful THEN about what I NOW would just worry about, if you know what I mean LOL.  It is also helpful that the first year since this transplant has been infinitely less medically complicated than the first year after the initial transplant. 

It's more....in the background somehow.  Off the front burner. 

How does that impact day-to-day life?

We have more freedom.  We are more comfortable making plans (although travel insurance is not something I will EVER not pay for).  And there is more joy.

Our neighborhood hosts Porch Fest every year. This year there were 140 bands playing on porches in a a 3x9 block radius, with my house in the middle of the "food district." Streets are closed. Crowds are sizeable. The music goes from Metallica to Traditional Celtic within a few steps.  There is a funnel cake truck less than a block from my house. Bliss.

This year a bluegrass band around the corner included a square dance caller.  

I've done square dancing off and on my entire life. It was a gym class every year in high school. A local friend hosted an annual square dance party.  My dad took my kids square dancing every year on our Christmas visit. But it's been a few years.

I danced in a square with total strangers, on a city street on a perfect sunny day.  Not one of us had much of a clue what we were doing, and nobody cared if we could tell left from right, clockwise from counterclockwise. It was all smiles, laughter, and tolerance. 

I was, incidentally, counted as 5000 steps by my phone LOL.

Accidental joy. Unplanned simple happiness. Unanticipated blessed memories.

Zero headspace occupied by a worry. 

THAT freedom is the day-to-day impact.

DeeDee

Becoming.....Adultier....

 Babygirl and I went camping this weekend with a family of grandkids, and one spare adult. 

The first time I was The Grownup on a camping trip I was 33. I set off to a campground with a tent and a toddler.  I admit to having miserably failed the Adulting Test on that trip.  I crawled out of a tiny tent with a headache and had to go to a neaby campsite to find somebody Adulty enough to be willing to give me coffee and Tylenol. We didn't last the weekend.

My oldest daughter probably owes her life to the fact that a new neighbor invited us to go camping with her family.  Over the summer I side-eyed everything she did and added The Things one must have to successfully camp with a family: A small stove, a few garage-sale pots dedicated to the camping bin, and a small tool box. This set of equipment has been traveling with me ever since, with some variations for number of campers or remoteness of site. 

This weekend I got to watch my daughter and boyfriend be the adults for their kids.  I'll admit that I went into this assuming that I'd be doing ALL of the Adulting, but planning on doing some Here's How It's Done training sessions. 

Well.  

They have a way cool tent that attaches to the sides of a pop-up dining fly. They have coolers. They have gear for sleeping.  And they have structured set-up with expectations for what the kids need to do. Most of my work was done for me LOL.

They don't have a stove but they have an awesome rack for the fire. But they don't have a toolbox. Things were needed: Hammer? sure. Potholder? got it. Lighter? Absolutely. Salt and pepper? ummmmm, no, actually.

Clearly I haven't camped in a while, and I did NOT do a full inspection of my stuff before load up.  The tool box is where the seasonings live, and there were none. 

"You need to go find and Adultier Adult, because I'm retiring from the Keep-Track-of-Everything position." Her face was a study.  She's about the same age as I was for my camp-with-a-toddler adventure, and she is clearly much farther along than I was, but, "I don't WANT to be an Adultier Adult. YOU'VE always been the Adulty one!"

I'm flattered and a little choked up, but I pointed out my age. The fact that I can and did load the inside and the top of an SUV with enough stuff to keep 8 people going for a weekend says a lot about my stamina, but even if I CAN do it, is it so bad that I don't WANT to do it?

I told her she needs to get a tool box that includes a hammer, a potholder, a lighter, a first aid kit and some seasonings in small containers, as well as the bajillion other things that go in there: Deck of cards. Pen. Pencil. Multi tool. Knives. Scissors. Clothespins. Splenda packets.  Being able to go somewhere because I am prepared is not the same as being able to go because she is. 

I have faith. She's ready. And the boyfriend?  I have never seen such a ruthlessly well-organized camp teardown in my life.  Respect, dude. 

DeeDee

PS I have a favorite new problem-solving camping phrase:  "Go ask your mom and dad."

PPS I was the one who needed the first aid kit.  JuJuBee is the one who did the awesome wound dressing that made it unnecessary for me to go for stitches in may hand. 

Above My Pay Grade.....

 While we were driving to Rochester last night, Babygirl pulled up her MyChart to see if there were results in from her second "I-don't-know-what-it's-called/DNA" test. They did one back in March, and drew another a week or so ago.  Again, the purpose of this test appears to be to see if the transplant is shedding more DNA than it should (potentially an early sign of rejection).  The doc sent her a fairly detailed email regarding the fact that neither the last test NOR the current one are normal. He outlined a plan for dealing with it, but since we were going to see him the next day anyway, I didn't focus on that.

I focused on Babygirl.  We've talked about how the test works to the best of my understanding. But since the Doc mentioned the possibility of needing to biopsy the kidney, the conversation was a bit more....specific.  She's had biopsies before, no big deal. But sometimes the results lead to a significant hospital stay, like this:

And the Results....

She is flying to California next week to see her sister.

Right after she returns, I am going on the mission trip.  

Neither of us wants to miss these things.  

So we talked about how much I've tried to just live life, knowing that I might have to be ridiculously flexible with plans and promises.  We can't stop planning trips and vacations and family gatherings and concerts. We can't. We MUSTN'T.  And knowing the fact that things in our lives can change on a dime shouldn't matter.  

It's not just her health. It's everything. It's the unexpected car breakdown, the unanticipated illness, the heretofore unplanned funeral.  I, perhaps more than many people, have a deeply embedded understanding that, well, shit happens. Until now, I've done all or the shifting, the re-planning and the adjusting. This is the first time that she's had to look at the possibility of a drastic, disappointing change in her own plans (her first major solo travel event!).

The best I could do was to say, "Let's wait and see what he says tomorrow." 

Well.

The DNA testing IS abnormal. There is more transplant DNA loose in her system than there should be, but....both of the tests are identical, 3 months apart.  Somewhat abnormal, but as stable as one can determine from 2 tests. This leaves her doc uncertain as to how to proceed, exactly, so the told us that with her morning labs today he had them draw a test for donor-specific antibodies.  A tie-breaker, sort of.  If there are antibodies, she needs a biopsy.  If there are not, they will repeat the UBER/DNA test in 3 months, maybe 2.  Either way, the test results won't be back for about a week, so go ahead and fly to Cali and have a good time.

Hoping sincerely for no antibodies.  With the last transplant, donor-specific antibodies were detected a year after the transplant, It took only 8 years for the kidney succumb to them: A Bolt From the Blue....

After gently telling Babygirl to live in the moment, and not borrow trouble, and to plan and live like nothing is going to happen?  I need to settle down and do my best to take my own advice.  Managing the unmanageable is FAR above my pay grade. 

DeeDee

PS To be honest, I AM better at this than I was.  Doesn't make it suck less, tho. 

PPS Yes, the test knows that she has 2 transplanted kidneys. It's abnormal either way.

Still Sleepy......

 Last year we were neck deep in postoperative concerns and complications, not the least of which was the new kidney's refusal to "wake up." https://kidneedsakidney.blogspot.com/2023/06/waiting-for-kidney-to-wake-up.html 

It was terrifying in the short-term.  It's concerning in the long term.

This kidney does not work as well as the last one did.  Remembering that decline in kidney function is exponential (each small rise in creatinine represents a relatively massive decrease in function), her current creatinine hovers in the 1.0-1.3 range. 1.3 is high for anyone. For someone her age? Moreso. Jorge's kidney was at 0.8-0.9. She got biopsies to assess for rejection at levels that are now "normal." 

However....

She's been stable at this level.  But, to my eye, not as well as she was in 2021, before Jorge's kidney failed.  She fatigues more easily. She can do anything (she goes to the gym pretty regularly for example), but it takes longer for her to recover from a strenuous day.

That being said, she is 1000% better than she was on dialysis. 

I follow a blog written by a young man whose kidney failure journey began in his late teens/early 20's. He has failed 3 (maybe 4?) transplants and is no longer a candidate for further transplantation. He is in his 40's and is coping with the fact that it is "dialysis for life" for him. The thought is, frankly, terrifying. TheKidneyBoy

It's difficult to describe the absolute terror of the week following her transplant, the fear that the kidney would not "wake up." The adjustment to the "new normal." 

I know that borrowing trouble from tomorrow is NOT okay. And I don't do it often. But anniversaries represent sometimes very difficult milestones, and I trip over the scars sometimes.

DeeDee

The Second First Kidneyversary.......

 Facebook Memories are a double-edged sword, sometimes amazing and sometimes just embarassing.  For some reason, June 9 appears to be an exciting date in my life historically. There were dozens of pictures of Citygirl and I living it up at The Hotel Hershey in 2013.  Pictures of a friends wedding in 2012. I was wished "traveling mercies" (to what destination?) in 2015. I was caught making s'mores in 2017. I commented on the state of Christianity in 2019, and on parenting in 2021.  

But 2023?  That was a doozy.

There are dozens of photos if my Field Blends trip with Citygirl. They document quite well how much I (may or may not have) had to drink that day before the trip ended at 3 PM.

What it doesn't document (despite this post: https://kidneedsakidney.blogspot.com/2023/06/here-we-go-again.html) is The Call.  How about 10 minutes into our drive home from Plum Point (north of Watkins Glen), Babygirl let us know that there was a kidney for her, which she received the next day. 

Like the last time it was a deceased donor kidney. Like the last time, the date of the donor's death and the date of the transplant differ by a day. This time we have received no information at all about the donor beyond that they were roughly her age and size. 

Two different people. Two different families.  Both facing the absolutely unimaginable, and both deciding to offer life from death.

I hope I never know what it is to be on that side of the equation.  But I know now, twice, what it is like to be on THIS side.  The gratitude. The fear.  The relief. The recovery. 

It's not enough to say "Thank you." It's not.  But it's all I can do.

So to anyone out there who has ever chosen, during the darkest night of your soul,to donate a loved ones' organs: Thank you. 

Babygirls Mom,

Deedee

Phoney Dependence.....

 Babygirl was walking Geordi LaDog yesterday.  It was rainy and cold, and she was adjusting the music on her phone when 'Lil Ms Speedbump decided that a change in direction was Absolutely Necessary. Babygirl went down.

I can envision the slow-mo horror that followed as her phone skidded across the pavement, and teetered on the brink of a storm drain....and went down with an audible splash.

Sigh.  

It takes quite a lot to upset Babygirl, but she had left for the walk already fed up with her niece and nephew (clumsy was endemic yesterday. Things got broken. Cleanup was grumpy). The outcome of the walk did not improve the tone.  

She bought that fairly pricey phone with her own money two years ago.  Since she knew she'd be stuck in a dialysis chair, she wanted one with a big enough screen to accommodate her visual limitations.  It has all of her favorite apps, and it has the entry to nearly a dozen separate medical portals that enable her to keep up with her prescriptions, doctor visits and test results. Her independence is extraordinarily dependent on this device.

The phone is insured, but not covered for being flung down a manhole.

"I can't afford a new phone!" It's a legitimate concern.  She's good with her money, but recently splurged on concert tickets and is planning a solo trip to California to visit Citygirl. There were understandable tears. 

She knows that I can afford to replace the phone. She simply does not want to ask for a single other thing. She is tired of dependency. She has always had a boundless baseline of tolerance for the bitter rediculousness that life hands her, but we dipped below the reserves yesterday. 

I let her know that I'd help, and rode it out.  An hour or so of recovery and we went out to run errands.  We needed stuff from Walmart and headed there first, and checked out phones there.  I'd already looked at Best Buy so I had an idea of what kind of prices we were looking at.  The Walmart sales guy was extremely enthusiastic about replacing that phone. I had to settle him down an little when I noticed his "enthusiasm" was creating massive anxiety for Babygirl.  That notwithstanding, she got a very decent phone for a very decent price.  We went to Best Buy for a case etc, and although she wasn't spoiled for choice, she came away satisfied.

Fortunately for her, her laptop and Google were of tremendous assistance with recovery of data and access. I haven't seen her this morning yet, but I'm going to guess there will be some residual "stress vibrations."

Yesterday it was, "I never want to go to Walmart again as long as I live."  

I feel that.

DeeDee

After Visit Summary.....

We drove to Rochester yesterday through a lot of rain. A LOT of rain.  It was never bad enough by itself to really be terribly problematic, but when we slammed into a WALL of fog in the dark it got terrifying.  I can't remember the last time my mouth went dry from fear. It took us quite a bit longer to arrive than typical, and it took HOURS for the adrenaline to wear off so I could sleep.

Babygirl's appointment was at 10. The lab opens at 8.  She went in about 8:15, and came out unusually quickly.  "They don't have any orders for me."

Well, that's a first. 

I told her to hang out at the lab. I went upstairs, breezed past the check-in folks and knocked on the office door.  I told them the problem, and they sent a text to the doc asking him to send in some paperwork to the lab ASAP.

As I was re-passing the check-in crew I got flagged over.  As in, Do Not Refuse (please).  I explained the situation and the lovely clerk told me that Babygirl could have had her labs drawn in Nephrology. Well, that's good to know, thank you - but there wouldn't have been any orders no matter where she was sitting.

It took a little while, labs were done, and we went back upstairs.  

By that time, Nephrology had apparently forgotten we were there.  Babygirl finally snagged someone as they were calling in another patient to remind them.  We went in, got seen, got lab reports (all good).  She was scolded for not checking her blood pressure (you HAVE met her right?) and not being religious about home labs.  Her doctor then plainly outlined what worries him the most.

Most of his patients are more "ordinary" transplant patients, with an average risk of complications and rejection.  Babygirl is NOT ordinary.  I mean, I KNOW this, but it's alarming to have her be medically challenging to an extremely confident uber-specialist. 

We've been hiking this highway for a very long time.  I've kind of come to regard Babygirl as some sort of, I don't know, Average Abnormal? Trust this kid to be Above Average when it counts LOL.

Her risk of early rejection is substantially higher than average because she has antibodies to EVERYTHING.  Her doctor wants to do all he can to detect rejection as early as possible.  To that end he has ordered some (pick some random alphabet letters here/DNA) test to detect the possibility of early rejection.  If I understood this correctly, this test measures the percentage of DNA in her system that doesn't belong to HER. If you consider that a kidney is only slightly bigger than your fist, the amount of foreign kidney DNA in her system should be proportional to her own (by weight? Volume?).  If there is more kidney DNA than expected, even if the kidney seems okay by function, they'll look harder for signs of rejection.  Likely via biopsy. 

It only just now crossed my mind to wonder about DNA from the OLD transplant? I'm clearly a bit over my head in this, as always.  I mean, I guess that would be distinctly different from the NEW transplant?

So someone will be contacting us regarding this (doubtless unGODLY expensive) blood test, which will be drawn at home by someone from whateverthehell biotech company invented this bad boy. Yippee.

To summarize: Babygirl has excellent kidney function, great cholesterol, undetectable diabetes.  She has some expected-but-improving hormonal abnormalities common to renal patients that do not require immediate attention. Her liver is slightly irritable, go easy on the Tylenol.  And as always, "Consider an IUD or other long acting birth control, and always use condoms" as one of her medications causes birth defects. Babygirl considers this a genuine non-issue but promises the doc that he'll be the first to know if that changes. 

Lordy.

DeeDee

Two Years of Increasing Fluff.....

 First things first.  12 years ago yesterday a young man's parents had a horrible choice to make.  In his death, the gave life and better health to many people, including Babygirl.  His kidney bought her 10 years of dialysis-free life. And while transplant patients can never truly be considered "healthy," she did SO many things with that time: Mission trips, hiking, traveling, and being the Best Auntie Anyone Ever Had (I mean, except maybe all of her sisters, who are pretty fine Aunties as well LOL). 

Last year this was all very difficult to talk about. The loss of that kidney, the desperate week of touch-and-go, and the subsequent spiral into dialysis?  It was a very different ride than the first time, when despite the shocking fact of Babygirl's kidney failure we had TIME (although to be honest, it really didn't FEEL that way!) to choose her transplant center, dialysis type, etc.  Two years ago it was more like running head-on into a brick wall at 100 mph while simultaneously needing to keep driving at 100 mph.  

Something like that. It beggars description, really. 

At the same time, I went from being the mom of one disabled adult child to the mom of 2 disabled adult children, as Curlygirl began her ongoing descent into the horror that is Long COVID. 

As a result of all of this, much of my life ground to a halt. I had already slowed down on my walking (winter is tough. I'm too old to fall on ice).  When spring came, work, dialysis, traveling with Curlygirl to investigate Long COVID centers and solutions, and helping out with the grandkids took over all of my energy and my coping skills took a nosedive.  When you know that self-care matters, but you can't really care that it matters?  I mean...

I started counseling and journaling (a good go-to when times are tough!). I'm still crawling up out of that hole. 

But one of the ugly consequences of all of this lack of self-care has having to also cope with the fact that my pants don't fit.  There's a lot of fluff going on.  The last time I spent a few years ignoring my own needs I gained 100 pounds.  This time it's "only" 10, and it has stabilized, but I can't, won't, will absolutely NOT buy bigger pants.  

I can't remember the last time I walked to work.  Ella is Very Sad (as only a droopy-faced hound dog can be) about how few walks she is getting.  I walked her yesterday and felt the top of my hamstrings protest like I'd personally invented hills just to torture them.  At least I wasn't winded, but to be fair Ella can't walk fast enough up a hill for that to happen. 

Recognizing that one needs to stay as healthy as possible to delay as long as possible being a burden on one's children, and taking the steps needed to do that are very different things.

So.  One of the oddest things on my bucket list is that I want to climb the bridge in Sydney Harbour. The summit is almost 450 feet above the water and crossing the entire bridge and back takes 3 1/2 hours. Citygirl and Babygirl want to go to Australia but both give a hard NO to climbing that bridge LOL. Citygirl's Beau is absolutely down with it, and he's muscular enough to keep me from dying in the process, so we are hoping to take that trip about this time next year.

Climbing 40 stories twice and staying on my feet for 3.5 hours? Well....that is not a NOW thing.  But it needs to be FUTURE thing, so I'm putting it out to the universe that I'm planning on being able to do it a year from now, preferably in the same size pants I'm wearing now without requiring a lie-down to pull up the zippers. 

DeeDee

Sweet Smelling Sheets.....

 I have, rather late in life, re-acquired the habit of making my bed every morning.  On Saturday or Sunday, I put on fresh everything, so last night I climbed into soft, clean, sweet-smelling sheets.  This is one of the simplest, richest blessings.

All week Facebook has been kindly reminding me of my life 2 years ago this week.  Babygirl was desperately ill, and I was as far from anything like home as I've been in a long time.  She is sitting with me now, looking for furniture for her room.  We are both sipping coffee, and the peace and sense of home is...intense.  The silence that a snowstorm brings surrounds the house.  The grandkids are blessedly asleep. I have a dog at my feet, and Babygirl has one at her side.  (The little Basshole is sleeping upstairs, anything but sweet smelling.  She helped clean up a small spill of THC oil yesterday and has alternatively been unconscious, paranoid-high and/or vomiting &etc. There is a bath in her immediate future once she regains some coordination.)

I have so, so much to be grateful for.  We didn't accidentally kill the dog last night.  I have a home that can be reconfigured to fit in those who need a place.  I have caring family, a fantastic workplace, and everyone I love is NOT in a hospital right now. 

And sweet, clean, warm flannel sheets.  

DeeDee

Hearing the Harps.....

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

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

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

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

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

Some music helps bring space into the soul.

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

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

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

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

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

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

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

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

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

DeeDee

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

Fairy Infestation.....

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

Best laid plans....

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

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

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

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

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

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

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

DeeDee

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

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

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

Normal Sick...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

DeeDee

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