The Terror of Running Short.....

I went hiking with friends on Sunday. I was enjoying a sunny, woodsy adventure laced with a ton of girl talk, when my I got a text from Hubby. Now, the kids send text messages all the time, as if I have no predictable job or other activities, but Hubby generally waits for a face-to-face, so I pulled it up. 

"The pharmacy only has 40 tacrolimus and can't order any more because manufacturer is out or behind."

Um.....What??

"Call Monday. There are none in the warehouse."

Well.  This is alarming. 

Let's back up a little, since it's been a LONG time since we've had to talk about medications.

When Babygirl's own kidneys died when she was 11, she went on dialysis: Very restricted diet, painful nightly machine hookups, misery. And statistically a poor life expectancy. Most dialysis patients live 5-10 years.

When she got her kidney transplant at age 12, that improved her odds somewhat. A deceased donor kidney averages 10-15 years, and the quality of life is better. But there's a catch:  You have to stay on medication for the rest of your life (or until the donor kidney dies) to keep your body from rejecting the kidney.  If you miss about three days in a row, you can pretty much kiss the kidney goodbye. Babygirl, like most transplant recipients, is on a cocktail: Mycophenolate (Cellcept), tacrolimus (Prograf) and prednisone. So far it's working beautifully.

But what do you do when, for some reason, there is a nationwide shortage of one of your medications? 

Tacrolimus was noted by the FDA on its official website to be at risk for shortages in May of this year (due to a lack of availability of one of it's ingredients, apparently). According to this FDA website, it was expected that this shortfall could become critical by the end of July....and here we are, right on schedule. 

So, when I had the chance today, between patients, during lunch, and after patients (paperwork be damned for a bit), I confirmed with our pharmacy that they could not, indeed, get this drug anytime soon from their suppliers. The 40 pills we have are all we are going to get.  Babygirl takes EIGHT of these daily. We have a few left of last months' supply.  We now have about a weeks' worth of a medication critical for keeping the donor kidney alive.

I called the transplant team by 10 AM to see if they could come up with a backup plan.  The unthinkable happened. For the first time in almost 9 years, no one called me back.

Well, frack.

Back on the phone.  CVS? about 3 days available, no warehouse supplies. Walmart? Nope. Walgreens? No can get. Wegmans? "We have about 3 days' worth, but we can order more tomorrow."  "Are you sure??" The sweet young man was somewhat taken aback by my doubt, but he double checked. "We have 3 suppliers. Two are completely out but I can get 240 tablets from the third if you can get me a prescription."  Oh HELL yes I can get you a prescription.

I think.

I squashed my immediate reaction, which was to call back as my physician self and give them the prescription over the phone.  I called the transplant after-hours on-call doctor for the first time in YEARS (and the only time when Babygirl wasn't actually ill).  The nephrology fellow called back in less than 5 minutes, and I explained the situation to her.  Apparently we are the first to hit this wall, so she was appalled when the overall implications hit her. She immediately called in the prescription for us.  Because we got a 5 day supply yesterday, our insurance is making us wait until Thursday to pick it up. I confirmed with Wegmans that they had indeed actually put the order in (THAT lady was a bit snarky about it, but hey, my kid's life is at stake here, so suck it up lady and just check, okay?), and we'll have a one month cushion, enough to get us through to our next appointment with the transplant team.

I came home and had an ugly cry.  My eyes are still pretty swollen.

The FDA knew in the middle of MAY that this shortage was coming. Since 1988, over 750,000 people have received organ transplants in the US.  Assume that some are no longer living. Some do not need anti-rejection medication (corneas, tendons), but most DO, and that's a lot of people who are at risk of some pretty severe, potentially fatal, consequences if one of the major anti-rejection medications just disappears from the market. It's not like blood pressure medication, where there are 40-60 reasonable alternatives.  In this field there are maybe 8-12 drugs, and you have to be on three of them at once.

Why didn't the FDA act?

In this specific case I can't speak with certainty. But in the case of many, many recent medication shortages the issue is Hurricane Maria.  Puerto Rico was the source of many of our affordable generic medication, and many of our medical supplies (you know, those cute little IV bags that piggyback your antibiotics to grownup IV bag? Those were in short supply for a YEAR or more after that hurricane).  Puerto Rico has had 3 governors in the last month, and parts of the island are approaching the second anniversary of the storm with no restoration of electricity or water. And, apparently, building new drug factories on the mainland takes time?

Our failure to see beyond ourselves politically is coming back to bite us medically.

DeeDee

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