Maybe Hitting the Nadir....

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

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

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

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

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

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

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

DeeDee

The Dialysis Aftermath....

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

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

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

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

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

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

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

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

DeeDee

The "Q" Days....

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

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

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

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

I'll take the Q, thanks.

DeeDee

Down to Once a Week....

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

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

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

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

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

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

DeeDee

High-level Tired....

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

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

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

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

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

We arrived home at 8.  

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

DeeDee

Weird Stuff Part II....

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

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

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

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

RMWDSA: Calls back. 

Me: "You have the wrong number."

RMWDSA: "Please text me." 

Me: "No." and I hang up. 

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

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

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

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

DeeDee

The Weird Little Stuff......

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

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

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

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

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

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

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

You canNOT make this sort of thing up.  

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

Thank God for the ones with common sense.

DeeDee