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