Moving On Up......

As Babygirl gets older, we are needing to move from kid doctors to adult doctors. First to go is Ob/Gyn (yes, as horrifying as it is to contemplate, pediatric Ob/Gyn is a Thing), so we just spent half an hour filling out 10 pages of paperwork for the new doctor that we're pretty sure she won't entirely read.  After all, it asks about exercise TWICE.

But they wanted to know if she's ever had HPV vaccines.  She has, of course.  Interestingly, it was a requirement for transplantation. Since the medications that prevent rejection increase cancer risk, it is logical to do everything possible to prevent cancer in the first place.  As I wasn't entirely certain whether this doctor tied directly into our hospital computer system, I pulled out this little baby:

It's the massive zip-up three-ring binder that CHOP gave us on our first visit to their transplant team.  It came complete with a shoulder strap, and I can actually throw my computer in there.  It has her surgical records, dialysis records, lab reports, and vaccine records (to a point - I think her most recent meningitis vaccines might not be in there, now that I look at it).  There are actually copies of her Guatemalan medical records as well. It's stored under my bed, and it still contains the waterproof emergency dialysis orders that we were to grab-and-go with in case of disaster.

You can see a pocket for the accumulated cards of those who have cared for her over time. Social workers, surgeons, dietitians, nephrologists, cardiologists, "Oh, yeah, THAT was that guy's first name!"

A number of these folks we learned to dislike because of what we saw as poor patient care, making us choose to go an extra 130 miles for better care.  Some that we loved and trusted with our whole hearts have retired.  In any case, Babygirl may be MY baby, but she's not a little girl any more.  It's time to move up.

We meet with the family doc on Friday to get some referrals to the Grown-Up Doctors.

DeeDee

P.S, Entirely inexplicably, there is a card in that file from a probation officer from the county in which we live.  Precisely NONE of our doctors are located in this county, none of MY  kids have been on probation, and really, just.....why?

Critters.....

One of the grandkids recently had headlice.  This would be less of a problem if said child's parents' work schedules hadn't been set up in such a way that they needed someone to take him to school every morning. And, rather than awaken him and a babysitter at O'Dark:30, he's been spending the night in our guest room so Babygirl could  get him up and walk him to school.

Now, this is not a crisis of the epic proportions that it was when his Mama and her 5 long-haired sisters spent ONE ENTIRE SUMMER struggling with an infestation of lice. (I have a touch of PTSD thinking about that:  A vivid flashback to a tub full of little girls with smelly cream rinse in their long hair whining about those dreadful combs - UGH.)  It's just a one-room intensive cleanup with the usual transplant-level clean of the rest of the house, but....

Babygirl CANNOT get headlice.  This is just one more ridiculously simple infection that NO ONE considers important that people with suppressed immune systems cannot tolerate.  These little critters bite the scalp, opening up the skin to all kinds of infections like cellulitis and lymphadenitis.

That is correct:  Babygirl could end up hospitalized because of a simple case of head lice.  This is what anti-rejection medications do to your immune system.

One more time:  Transplantation is a treatment for kidney failure, not a cure.  It has its own long-term, never-ending risks as well as benefits compared to dialysis.  We need a cure.

DeeDee

Nuts and Bolts....

Many of you know already that I've retired from family practice after 30 years in essentially one location.  Lots of people have, of course, asked why. 

The answer is, of course, quite complex.  But lately it feels like the average family practice patient arrives at a 20 minute visit with a list of 6 complex problems, 8 of which require lab work, updated x-rays and orders for health-maintenance studies like colonoscopies, with 2 additional that get remembered when I have already said good-bye and have my hand on the doorknob or am halfway down the hall.

And my last night on-call, I took a call from a young mother whose 15-month-old had had 3 consecutive febrile seizures, so she was started on medication to prevent further episodes and referred to a specialist.  At 3:30 AM this mother called to ask if she could stop giving the baby the new medication as it was making her hyper, and mommy wasn't getting any sleep..... Well, you can't UN-give the dose that's keeping her awake right now, can you? And I can't reach through the phone and remove your uterus through your nostrils so you don't reproduce again, can I??  Oh, wait, no, can't say that.  Yup. Time to get out of family practice LOL.

So now I'm working in Pain and Wellness, which is, oddly, a wonderful change.  One problem per person per visit - what a luxury!  And our building has a therapy dog, and a weight loss sauna.  I can do this! 

So now I'm home for dinner every night, and Babygirl and I are catching up on projects here and there. Yesterday we disassembled an antique table to move it to her room, and were naming tools as we went:

Me: "Washers look like nickles with holes in the middle.  The male parts are bolts, and the female parts are nuts."

Babygirl: "Seems like THAT should be the other way around....."

O. M. Goodness.  That kid is funny.

DeeDee

The Annual Numbers Game....

I always leave our taxes 'til the last possible moment. It's part disorganization, part procrastination, and part knowing that it's not likely to be good news anyway.  But putting it off was a bit Russian roulette-ish this year: Our tax preparer's significant other is very high on the kidney transplant list.  As much as they want that kidney they must be praying for a two-week delay so they can get through tax season before the medical bills begin to really hit!

And with prayers for them in my heart, here are our numbers for 2018:

Our biggest expenses were the most hidden ones.  My insurance premiums are taken out of my paycheck biweekly, pre tax. The annual totals are pretty startling.

Medical insurance: $6015
Dental insurance: $1072
Vision insurance: $281

Total insurance costs: $9968, $830/month, $383 right out of every single paycheck before I see it. We usually don't include these costs when calculating our out-of-pocket expenses.

Medical expenses:

Doctor/Hospitals: $7215
     (2016, $7302)
     (2017, $5893)

Medication copayments: $3438
     (2016, $3416)
     (2017, $3509)

Parking and Tolls: $133
     (2016, $157)
     (2017, $112)

Medical Mileage: 3487, $872 allowable expense.
     (2016, 3040)
     (2017, 2111)

Grand total out-of-pocket: $11,503.  That's $958/month ON TOP OF the $830/month I'm spending to, theoretically, PREVENT these expenses. And keep in mind that not ONE of us was hospitalized in 2018. Eighteen hundred dollars a month. Twenty grand a year. And we did not spend enough to qualify for the medical deductible.

Babygirl collects disability at this point.  $787 far exceeds her monthly stipend. And while I realize that our totals are for the three of us, the doctor/hospital section is mostly her.  The medication section is 75% her dad and I.  The mileage, parking and tolls are ALL her. Most of her income goes toward meeting her medical obligations. This does make things easier for us, of course, but it's a very discouraging reality for her.

We had exactly one month this year with no medical travel for anyone. No PT, doctor visits, eye exams or dental recalls. Ahhh, November.

I have to wonder. What percentage of all of this is spent on our actual health, and how much on insurance company profits? How much goes to pay the pharmaceutical sales reps, the billing specialists, the corporate CEOs? What percentage of all of this is being spent lobbying my government representatives to block universal health care?

DeeDee

Seven Years......

People kindly say I don't look my age, that I have lovely skin, that the way my hair has turned grey is actually pretty.  I don't disagree.  Outwardly, I think I look pretty well.

But my soul is crosshatched with lines, wrinkles and scars.  I got a few in my crazy childhood, a solid fistful from medical school, and divorce and single motherhood leave a mark or two.  Watching your kids struggle with chronic but common childhood illnesses skins you up some.  Watching academic struggles caused by a biological parents' drug or alcohol abuse:  That's a gut-kick, for sure.  Seeing your kids move into relationships of their own, making families, getting their hearts broken and being unable to help at all?  Radically painful.

And under and over and around it all plays the music of Babygirl's kidney disease. It isn't that the things that happen to her sisters have been or are small, or even transient:  They are enormous, life-changing, permanent.

But perhaps because Babygirl is still home, the day-to-day reality of her illness hovers more. The medication alarms (which the dogs now associate with their nightly treats LOL), the endless pill bottles, the habit of low-lighting to avoid increasing headache pain are all minute-by-minute reminders of our surreal version of reality.

So my soul sometimes sags like an old lady's boobs.

I have to confess that I've spent too much of the last nearly 8 years intermittently pissed about it.  I mean, I get that crap happens. I get we don't get to choose.  I get, I REALLY get, that God isn't doing this to her, to US, and that He will work with us to get us through it.

But our pastor said something Sunday. Something I've heard a thousand times in my life, but that somehow just sounded.....different....to me this time.  He was just preparing for communion, and quoting the passage where Jesus asks his Father to "let this cup pass from me."  Jesus knew, REALLY knew before He asked, that the answer was going to be, "No." And he was okay with it.  He just..... needed to ask.

I'm not sure why that comforts me so much.  Maybe because it's permission, in a way, to say to God, "Look, I KNOW there's no turning back, but you know I wish we could.  I'm just glad you don't hold that against me."

It makes it easier to be in my saggy, scarred soul, and be entirely grateful every single day that God gave me daughters who grew up to be my friends, Babygirl included.

Seven years ago today a team of doctors and nurses installed the kidney of a stranger into my little girl, and made her life infinitely better despite the day-to-day struggle.  That boy's parent's still mourn his loss every day. Pray for Jorge's family.  They will never not miss him.

DeeDee

The Night Before....

One of the interesting things about Facebook is the feature that brings up memories every year. One of today's was this:

"They called us a 12:22 AM. Babygirl's a match, but they don't know yet if we need to come. I told them to call us if they want us to come. That call would have come in by 3 at the latest. It's not our turn this time. Thank you all for your prayers!"

I posted this at 5:57 AM, February 1sr, 2012 after what I'm guessing was a pretty sleepless night, what with one thing and another.  Looking back, I know I packed bags for Babygirl and I in case we really did have to leave for the hospital.  She would have been on the dialysis machine, always a death sentence to sleep anyway.  I would have been crawling out of bed that Wednesday morning, struggling to face another day after yet another disappointment.

Not our kidney.  Not yet.  How much longer is the kid going to be on this ride?  How many more nights of agony on dialysis?

It turns out:  Two more.   We had one night to recover, and then we were on the road for real.  

There is a clear demarcation between Before and After.  For Babygirl, I think the line is between  February third and fourth: Between dialysis and donor kidney. Or maybe it was August 22, 2011:  Before dialysis vs after dialysis.

For me, the line remains April 28, 2011.  That was the day I blithely took my healthy-seeming child to her camp physical.  On the other side of the line was the 29th, when the call came telling me just how wrong I was about her health, the day when everything I thought was true, wasn't.

Thinking of that moment can still rip my heart, stop my breath, and make me weak. When people talk about going back to some other time in their lives, like high school or their 20's, I think to myself, "I'd give anything to go back to when she was 9."  The problem is, of course, that there would have been nothing to do that would have changed things. But like all of that kind of thinking, perhaps if I'd known what was coming I would have taken the time to enjoy the freedom more.

DeeDee

A Mailbox Full.....

After last week's trip to Philly, I arrived home to a surprise mailbox full of medical bills.  Not that bills are surprising in and of themselves: They are a normal part of our lives now for the past seven years.  What was surprising was that there were so many, so diverse in type, covering such a long period of time, all arriving at once.

Four of them were for amounts under $50. They were for Hubby and I, and were for office co-payments and his CPAP supplies and the like.  Got it.

One was for just over $500 for pain management costs.  We deliberately switched Hubby from the pain management program he was in to the one run by OUR hospital to get a better deal.  Looking back at old bills, this IS the better deal, but, DANG.

One was for over $1200, for Babygirl's recent visit to the Hypertension clinic.  Since they did testing available at out hospital (echocardiogram, carotid studies, etc), they are twice as expensive. In addition to the testing costs, the bills for the doctors who READ the tests, as well as the bills for the doctors who actually saw her that day, were also over $1000.

Her visit to her headache doctor, a different hospital, was about $500.

In addition, there are over $1500 in disputed charges still pending at both hospitals for tests that are considered experimental at CHOP, and for her headache medication at Nemours. Those bills may yet arrive.

The kicker bill was for just over $1000, and was for MY hospital stay in March of 2017 (MRI-asana....., Meeting A Donors Mom.......).  Why?  Why NOW???

There is nothing more discouraging than having more than $5000 worth of medical bills hit the week before Christmas, in a year where you have already purchased a new pool liner and hot water tank, paid out a TON in vet bills and been hit with a water bill of $2000 because of an unreported water leak.

I got on the phone.  For FOUR hours.  Most of the bills I can do nothing to change, except:  The medication at Nemours was properly billed and we won't be charged for it, $500 not to worry about.  The "experimental" stuff at CHOP really WAS experimental - it's data gathering, remember? (Security Blankets....), so we CAN'T be charged for that, $600 gone. 

And after four frustrating hours of being unable to reach my own hospital's billing office, I got a helpful soul who told me they had never sent me a bill for the March 2017 hospital stay because it had been paid in full.  Really? Because I have the damned thing IN MY HAND with this month's date on top, would you like to see it???  She gave me her name, her word, and told me to destroy the bill and not worry about it. 

"You people should pay for my blood pressure medication this month."  She laughed a little, and said, "We should."

Bottom line:  I've still got a crap ton of bills to pay.  I'm guessing that I'll be able to use our health savings account in January, but since that's a new thing to us, I'll have to see how THAT game is played when I get the information about how that gets accomplished.

DeeDee.