Wednesday, April 29, 2015

Defying Gravity....

My Mom hasn't been out of the house since her hospital stay in last month, and she was carried out on a stretcher for that adventure.  Prior to that she'd had a doctor's visit before the snow fell.  A handsome young physical therapist came and made her walk and gave her exercises to do, which she faithfully his presence, and not once since.  Memory loss does that.  I confess that I did not add "Making Mom comply with her exercise regimen" to my "taking care of Mom" list along with:  Cleaning the cat boxes; getting the cats to the vet; keeping the house stocked with food, water bottles and disposable panties; sorting her pills and changing the doses weekly based on current daily weight history and recent labs; daily insulin adjustments and blood sugar readings; coordinating nursing visits, PT visits and nurses get the idea.

Yesterday she had a visit scheduled at the pacemaker clinic.  She hasn't had the pacemaker checked in months.  We no longer pay for a land line and it can't be checked on a cell phone.  I know it is still working because while she was in the hospital she had a coughing spell so hard that her heart stopped beating and we saw the pacemaker take over on the monitor.  Because she is not usually pacer-dependent the battery will last a long time but...the last time she had it checked she'd broken a wire and had to have it replaced, remember that?

So I got her dressed and started moving her toward the car a solid 40 minutes ahead of the appointment, which is 10 minutes or less away. She had to use the bathroom first.  Her memory has gotten so bad that she couldn't quite figure out how to manage both panties and slacks and needed help.  It took my sister-in-law and I both to get her down the back stairs.  And then....

She missed the car seat when she sat down and landed on the car's door frame.  Her knees no longer bend beyond 90 degrees, so this was NOT a comfortable position.  Some quick thinking got a plastic crate stuffed under her before she could slide to the ground, and we pulled her feet out from under her got her more comfortable, but nothing we could do could get her up the extra 8 inches into the car, let alone up onto her feet.  We didn't have a lot of room to work in - the open car door was just a few inches from her left elbow.

My SIL has an excellent sense of the absurd, and despite the obvious what-the-heck-ness of the situation we were laughing a LOT over the next 45 minutes as we worked on what to do next.  Finally she thought of the obvious:  Forget about lifting the old lady - lift the CRATE. 

Hubby got some sturdy rope from the camping supplies.  I got down and threaded it into one side of the crate while SIL got it through from the door side (she's WAY younger than we are, and still flexible, thank God).  With a well-coordinated heave from three sides we got her up, and took her back up the stairs into the house (with her mystified, "But weren't we GOING somewhere?" at every other step).

I called the pacemaker clinic 27 minutes after our scheduled arrival time to let them know why we hadn't come. 

"Would you like to reschedule?"

The question nearly brought me to tears.  How in the name of all that is holy am I going to GET her there?  Even if we had a ramp she might have failed the transfer to the car, and what if she had fallen at the other end when I had no help?  I nearly needed the 911 boys as it was.  Getting her transported home from the hospital in a medivan cost $54, and they did not really assist her into the house.  If my brother hadn't been there she wouldn't have made it in. 

Gravity is not our friend here.


Sunday, April 26, 2015

Do Not Go Gentle....

"Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light."

Dylan Thomas

My father has been fading for some time.  Parkinson's disease, smoker's lung, diabetes and arthritis slowed him to a crawl. Increasing deafness added some loss of interest.  Throw in diminishing vision due to macular degeneration, add one minor infection, and voila! You have a fragile old man in a nursing home where once you had a vibrant raconteur at your dinner table, complaining about bumping elbows with the 'righties' at his side. 

My brother and I went to visit him, taking his wife and one daughter each along.  He was alert at lunchtime, but when we came back with a pizza party at 5 o'clock for dinner he was asleep, and nothing we did could awaken him.  He slept in his wheelchair while we shared stories and wings, memories and soda.  And after a couple of hours, the aides came and lifted him into his bed.

I couldn't help thinking as I kissed his forehead that it might be the last time.  The nursing home was supposed to be for rehabilitation, but it looks like he might be choosing gentle over rage this time.


Thursday, April 23, 2015

And Snow in April.....

Babygirl's Saturday lab results came in on Monday. Her creatinine continues to creep downward and is now at 0.98.  Her potassium was also low, a brand-new issue, so we're pushing broccoli and fruit.  Her headaches have been remarkably good, until a pretty bad one this morning.  Her head simply must not like snow.

People are acting like snow in April was just invented, but to me it seem pretty normal.  I recall a Mother's Day a few years back where I snapped a picture of about six inches of snow on my blooming yellow forsythia.  Pretty, but kind of depressing for May.  April snow I can handle, even if it means having to glove up to walk the dogs.

I managed to walk them both together this morning and I didn't die and both of my arms are still in their sockets.  Maybelle is doing pretty well!


Wednesday, April 22, 2015

Days of Sunshine.....

Two sunny, warm days together on a weekend after a long, frigid winter seemed a blessing too big to be imagined.  And to have nothing outside of home planned, nothing at all?  Even more unbelievable!  (Well, we did have to do Friday's forgotten blood work Saturday morning before we went to the gym, but that was a minor setback.  And it had the advantage of staying any possible bad news until after the weekend.)

Babygirl and I went to the gym as soon as it opened, worked out and came home to wake up Squeaker.  Since his Mom and Dad have had a lot of overtime lately, we enjoyed his company overnight.  I slipped out and ran to Sally Ann's Boutique to see if I could find a couple of pairs of pants that wouldn't fall off when I stand up.  I have succeeded in getting back to my pre-KidNeedsAKidney weight, which is delightful except that nothing in my closet fits except a couple of pairs of jeans that I kept hoping against hope would fit again 'someday.'  I got my hair cut and arrived back home in time to make it to a very important appointment.

We went to meet Maybelle.

My old dog, Simon, is 11 years old.  He's an awesome, big little dog, and even though his brother Garfunkel died years ago (we named them right, didn't we?) he's done well as an only dog.  But he's gotten some arthritis, and he won't walk more than a block with me.  I feel a little uncomfortable walking alone in a city at 5 in the morning in the dark.

So I've been cheating on him.  For weeks now I've been checking local rescue sites, looking at available dogs, visiting on visitation days and putting in applications.  (My firstborn is paid for and about to get married, so I was unwilling to sign her away, but it seems like one must do something like this to get a rescue dog.)  I refuse to take a puppy or a very young dog - frankly, I'm too old to deal with that kind of crazy energy.  But this six-year-old looked like she might, maybe, just be slow enough:

It is difficult to tell by looking, of course, because hound dogs always look slow and pathetic.  According to the website she'd been in the shelter a year ago, placed and returned due to 'owner circumstances.'  When I enquired, they euphemistically told me that the owner had to spend some time in a kennel himself, and returned the dog to be re-homed.

Squeaker came along with us, and we put him up on a chair for safekeeping. When Maybelle came into the little room to meet us, she walked up to him, eyeball-to-eyeball, and slurped him right in the nose. Did I mention she's 60 pounds and over three feet tall?  She needs to add another 10 to hide her ribs.  And she drools like Hooch.

It took a couple of days of back-and-forth paperwork, but she's home, snoring on the couch.  She has beautiful indoor manners, and someday (SOON) she'll learn how to walk on a leash without dislocating my shoulder. She ignores cats and wants to be friends with every dog she meets. She looks sad and slow, but she LOVES walks.  I'm thinking she'd LOVE runs. 

But what she loves most is love.  She is the sweetest, happiest-hearted dog I've met in a long time.  Each dog has it's own voice - hers is a Brittish-accented nanny sort, a nice contrast to Simon's "I dunno, Davey...." goofiness.  (Okay, you dog owners know exactly what I am talking about, so stop snickering.)

Welcome home, Maybelle.


Friday, April 17, 2015

Things We Shouldn't Forget.....

While we were getting ready to have Babygirl's most recent biopsy Dr L mentioned that it was her third. 

"No.  It's her second.  She had one shortly after the transplant, and that was it."

Odd, he said.  There appeared to be two previous biopsy reports on file.  But I was SURE she'd had only one.

Until I stumbled across this post:  A Change of Pace....

How. Did. I. Forget. This?

It beggars my imagination to realize that my kid went under general anesthesia for a procedure and I didn't have the slightest recollection of the event.  It frightens me more than a little to consider that our lives have become so absurdly abnormal that I could just blank this out, like a bad first date or something. 

That is just.....wrong.


Wednesday, April 15, 2015

You Impossible People.....

After dinner discussion about the possibility of getting an additional family dog from a local shelter.

Babygirl:  "When I get a house of my own I'm going to get a COOL dog."

Mom: "Can I come visit?"

Momentary pause....followed by snickers, then outright laughter.

Babygirl: ".....well, I guess you can, if you're a ghost!"

Mom: "Do you expect me to be demised?"

Me:  " 'Demise' is not a verb, Mom."

Mom: "You people are impossible to talk to!" I am typing.....

Mom: "You have a blog?"

Babygirl:  "I should do a video blog on YouTube.  But I'd need a video camera."

Mom, to me:  "Buy her a camera! You have the solution to all of her modern problems!"

Babygirl:  (Laughing hysterically) "There is no solution for all of my problems."

Mom:  "You have problems? That's terrible, because it's only going to go downhill from here."

"Thanks, Grandma...."

Hmm....and you think WE are impossible to talk to?


Monday, April 13, 2015

The Annual Financials.....

From a medical perspective it's been a cheap year. 

That's a relative concept, of course. 

Babygirl's Medicare premiums rose to a total of $1258 for the year.   Given what we are seeing in terms of our deductibles and increased medication copayments for this year already, we are going to be losing ground on this one now that the Medicare is gone as of February 28th.

Our medical mileage for the year came to only 2545 miles.  Since in 2012 we hit over 14,000, this isn't bad.  The deduction for this would be $764.

Tolls and parking were a mere $140.

Medication copayments came to $2400 for the three of us, with Babygirl being the lowest contributor since her copayments were largely picked up by Medicare. 

Hospital bills, dental care, eyeglasses and miscellaneous came to just under an additional $1000, bringing the total to an almost even $5500.  That's about $460/month, and it doesn't include my pretax payment of our health/dental insurance, which is another $180/month for the family.

$640/month in medical expenses. 

And not one penny of it will be tax deductible this year because we didn't spend enough for that, thanks be to God. 

I have never tried to get a total of what we would owe if we didn't have insurance.  I see the hospital bills, of course, but I don't really have any idea about the pharmacy bills.  And I'm afraid to ask:  I just don't want to know.


Wednesday, April 8, 2015

The Red Salad Bowl.....

Red is, as you know, Babygirl's favorite color.  A few years ago Aldi had a bright red salad bowl set for sale, so I bought it to cheer her up.  The little bowls have largely bit the dust, but the big bowl is hanging in there.  I use it frequently.

It's my Pill-Hauling Bowl.

I have to sort pills several times a month: For me, for my Mom, and for Babygirl.  We each have a pretty good collection of medications, more than can be grabbed in one run to the pill cupboard. (Notice 'pill cupboard.'  Not 'medicine cabinet.'  There isn't a medicine cabinet in the world big enough for a transplant/migraine patient.)  So I grab the big red bowl, load it up with the dozens of pill bottles, and make a separate run for the stragglers and the pill sorters. 

It's become routine for us, and I don't think about it much, but I did it in front of my Mom last night and noted her level of astonishment at the sheer size of the project. 

How weird has life gotten that it seems normal to need a large salad bowl to carry all of your kid's medicine bottles from one place to another?

She takes twenty-one pills in the morning, and twenty-three in the evening, not counting this weeks' extra steroids.


Tuesday, April 7, 2015

Drumroll, Please.....

I got a team call on speakerphone today about Babygirl's biopsy and test results.  I'm certain I've never had test results given by a group before. It was a bit...unnerving.  Like eavesdropping, a bit.

The results were generally very good: The viral studies were entirely negative. There is no antibody-mediated rejection.  There is no cell-mediated rejection.  There is no evidence of damage from the rejection medication.  There are a few neutrophils (bacteria fighters) hanging around for no apparent reason, which is baffling.  There is non-specific evidence of inflammation with no good explanation for WHY it is there, but it is mild.  The final report officially reads: "Mild subacute rejection" but none of the doctors feel this is an entirely correct interpretation of the findings, although none of them could put a better label on it.

Alrighty then.

Well, if you and a team of pathology experts can't quite figure it out don't ask me to explain it any better either.  Just give me the plan.

Since things don't look too bad, they don't want to readmit her.  We are to do a short burst of high-dose rapidly tapered oral prednisone and recheck the creatinine in 10 days.  If things are still not better then the next plan is to increase one of the anti-rejection medications (the mycophenolate) and carry on. 

Works for me.  Let's hope the kidney agrees.


Sunday, April 5, 2015

Canceling Easter.....

Due to the many uncertainties surrounding Babgirl's recent hospital stay, we opted to cancel our usual Easter festivities.  We all went to church as usual, and it was lovely, but there was no Easter egg/basket hunt, no family dinner, no candy gorging, no deviled eggs.

It was a good plan. Babygirl is sleeping.  I'm ready for a nap.  Mom has no idea what day it is.  The Easter Bunny has a cold and pinkeye.  The grandkids can romp at their other Grandma's house. 

We didn't get home until last night at nearly 7. We didn't have eggs died, baskets shopped for, or candy.  Overall, the stress of getting a holiday put together would have outweighed the fun.

I am going to go lay down.  Time enough for Easter next weekend, somehow. 

He is Risen.  He didn't need the party anyway LOL.


Saturday, April 4, 2015

A Long Day Waiting.....

In my experience there are few things more exhausting than sitting and waiting with a sick child, and yesterday was all about the waiting.  We had no specific scheduled time in the OR for the biopsy, so our orders were to stay 'home' in Ambler and wait for them to call us in.  Babygirl took her meds with a little water (minus all the vitamin-y things) at 7 AM as usual, got dressed and packed, and waited.  The call came at 9:09:  Come on in!

The traffic at that hour isn't too terrible, so we had no trouble making the 10:30 arrival time.  The instructions for finding surgery were given over the phone by a recording:  Go to the THIRD floor of the Wood Center, which is the FOURTH floor of the main hospital.  Oh, um, okay, that's clear, kind of.  We accomplished this, went to the pre-op area for a repeat pregnancy test (in case she managed to get pregnant since the test they did yesterday in the clinic!) and then we waited. 

Doctors and nurses came and went.  The biopsy site was marked (right lower abdomen, where the transplanted kidney lies).  We answered the same questions multiple times:  When did you eat last?  Drink?  Which pills did you take?  What time?  One nurse questioned the consent, as it didn't specifically say 'right transplanted kidney.'  Since she has but one transplanted kidney that felt redundant to me, but there are kids with more than one so I saw the point. 

But the entire time the clock is ticking.  And that wouldn't matter except that I know that that tissue specimen needs to be in the pathology lab by 2 PM in order for us to have any results available by the end of the day.  Finally, at 1:10 they had her drink some happy juice and wheeled her down the hall. 

I had had a couple of cups of coffee and a bagel at home at 6 AM, before Babygirl got up.  By the time they wheeled her away I was pretty desperately thirsty (I hate eating and drinking in front of her when she's not allowed - it's silly, but it's me).  I made my first run for the stairs, grabbing a water bottle (which I finished before I hit the check out), a PBJ on wheat and a coffee.  I made the run back up the steps (add an extra 22 - we were up another flight, so 60 total) and went back to the surgery waiting room.  

The surgery waiting room was crowded, full to the gills with people speaking at least 5 languages in addition to English, all buzzing with nervous energy or flat-out fear.  I liked it better there when we were alone at 2 AM three years ago waiting for them to finish Babygirl's transplant.  At least then it was just OUR nervous energy.

The procedure itself is very brief, so she was in recovery shortly after 2, and I joined her there.  They had managed to do the procedure under sedation, so she was already pretty alert, complaining of hunger and thirst.  She ate graham crackers and apple juice and fell asleep.  We waited for a room to open up on the nephrology floor.  She continued getting IV fluids, and drank more intermittently and then, of course....she had to pee.

Following a kidney biopsy you need to remain as flat as possible for 8 hours with a pressure dressing over the needle site to prevent bleeding.  Getting up to go to the bathroom is not on the list of things that are allowed.  For the sake of Babygirl's dignity I'll skip the details but in the end the doctors lost and she won, but not until we arrived at our room on the floor, which wasn't until after 7 PM.  We were the last people in the recovery room.  Rooms were tight, apparently.  Or there was the usual 3-hour delay in discharge paperwork for somebody else up there.  The recovery room wasn't a bad place to hang out.  I had a comfy glider rocker, entertaining conversation with the nurses, and Babygirl slept a lot.  At one point I made another run to the cafeteria for food for both of us (60 more steps!). 

I did some serious rule-breaking, though.  As the clock ticked toward the time for her evening medications, I considered how long it takes for the floor admission process, for orders to go in, and for meds to come up.  Last time she got her transplant meds at nearly 10 PM, three hours late, which led to a misreading of results on the levels of her medications in the next mornings' blood work.  Since we are here fighting for the kidney it seems counterproductive to be missing doses of critical medications, so....I gave her her 7 PM pills.

It is always easier to get forgiveness than permission.  And quite frankly, although the admitting nurse didn't say so in so many words, she knew we made her job a LOT easier.  And in exchange, she bullied the doctors into putting in diet orders for Babygirl so she could order a meal 10 minutes before room service closed. 

Admitting orders weren't put in until nearly 9:30.  She wouldn't have gotten her medications until about 11.  No regrets.  We both slept like the dead.

Preliminary biopsy reports show that there are no large deposits of antibodies in the kidney.  And in morning rounds today the attending nephrologist (I'm sure I didn't get his name right - it simply CAN'T be Breinschwagger, can it?) perked up his ears when I said (for the one hundredth time!) "sore throat for about 8 weeks now").  Questions flew:  Strep tested?  Yes, twice, positive once and treated and cultured here three weeks ago after treatment and negative.  Viral studies?  Yes, historically because of her immune status but not recently.  So suddenly someone is thinking that maybe her acute illness and her kidney's unhappiness are connected - somebody besides me, that is - so they are doing extra blood tests. 

None of these tests will be available today, and the final biopsy reports will not be available until Monday or Tuesday.  They aren't going to keep us here for these.  They are going to make us wait for today's CBC to make sure she isn't bleeding from the biopsy, and today's creatinine before deciding to send us home, but the general plan is for discharge this afternoon.



Thursday, April 2, 2015

Two Hundred and Forty Steps....

We came into Philly for our recheck from Babygirl's hospital stay three weeks ago. To recap:  She was admitted because her creatinine bumped up to 1.7 (normal for a kid is 0.6, normal for Babygirl is 0.8 or 0.9).  Increases represent exponential losses in function, so doubling isn't losing HALF your kidney function, it's more like losing 75%.  Or more.  With hydration, it came back down to 1.1 and they let us go.  A week later locally it was 1.07, a marginal improvement. 

We arrived before 8 AM, as usual, got our paperwork and hiked up the 48 steps in the atrium to the lab, came back down and had breakfast.  Our follow up was with the doctor who took care of Babygirl in the hospital, which was nice.  He discussed her ongoing production of antibodies against the donor kidney.  The antibody levels aren't increasing, which is good.  But they aren't going to go away on her current medications either, which is not good.  Her creatinine is increasing, now at 1.3 despite a week of very good hydration.  He went over treatment options:  Do nothing (which is common, and rather standard-of-care in many places), give intermittent IVIG (IV antibodies to tag HER antibodies and take them out of business so they can't hit the kidney.  She'll keep making more, so they have to do this every month for.....ever?), or do intermittent plasmapheresis (basically superficially similar to dialysis in that it removes her antibodies from her blood and puts the blood back in - the Red Cross does this to obtain platelets).  They can't make any therapeutic decisions without knowing if it is the antibodies that are damaging the kidney.  One of her anti-rejection medications could be the problem, so while we are waiting for those results, let's go visit the sedation team and see if they can fit Babygirl in tomorrow for a biopsy if we need one.

That's on the third floor.  Up the 48 steps we go.  I already know that they are going to say no.  The last biopsy required extra medication because Babygirl is so incredibly ticklish (who knew this would be a medical issue?), and with the weight she's gained due to medications, sedation is no longer a safe option.  No surprise to me, they say no.  If it wasn't safe nearly two years ago for her spinal tap, why would it be safe now?

The medication levels are fine, so adjusting them will not help us.  Biopsy is on, and we need to go to see the anesthesia team ("Even though we were just there three weeks ago?" I ask.  Apparently so.)  Up the 48 steps.  The receptionist checks:  We are not on her list, but everyone is at lunch.  WE haven't had lunch, so we give her our phone number, and go back to the main building (you guessed it, down the steps) for lunch.

We climb back up the 48 steps and check back in, and the receptionist informs us that Nephrology never called them, and if they don't call, we won't BE on the schedule, and she can't get us registered. 

I can honestly say that at this point I should likely have been a little pissed.  But it's seriously already not the worst thing that's happened to me today, not by a long, long shot, and it simply made me laugh.  Babygirl and I both laughed out loud, spun around and headed for....the 48 steps. 

Nephrology called.  We hiked back up. Again.  The receptionist says we are still not on the list, but to wait a few more minutes because these things take time, you know?  We have a pretty good grip on THAT concept, truly we do.  Ten minutes later my phone rang, and it was the anesthesia NP asking to speak to me.  No problem, I told her, I'm in your waiting room. She was a little surprised.  It seems that Babygirl really had no need to be seen in person since she'd just been there three weeks ago and she just needed to update things, but since we WERE there.....

Oh.  My.  Goodness.  I didn't tell Babygirl that we needn't have waited, it would have been just too frustrating.  The NP was kind and efficient, and tomorrow the biopsy will happen, but we don't know what time.  The hospital will call us, in plenty of time, they say, for us to get from here to there for the procedure.

Meanwhile I don't feel too bad about skipping the gym today.