Fresh Start....

Babygirl and I met with her new neurologist today.

I walked in and handed her three lists:
1) The medications she is currently taking.
2) The medications she has tried in the past.
3) "The List" we developed of every of all of the medications that have ever been used by ANYONE for migraine that she is allowed to try given the limitations of her transplant medications and kidney function (it is three pages long, single spaced, with comments on almost every medication outlining any potential concerns and what to do about them).

She took a thorough history.  She listened carefully and asked questions when she wasn't sure she'd heard correctly.  She made Babygirl herself talk about the headaches and how it's been.  And then she told us a few things:
1) She isn't the best headache specialist in her group, but she will make sure that is who we see next time, at which point it would be logical to decide whether to proceed with more Botox or not.
2) There are medications that are not on any of the above three lists, and we are going to try two of them once we clear them through the kidney team (she will let US do that since that seems more efficient to her. Imagine her trusting us to actually check it ourselves....).  We are to start low and adjust weekly and call EVERY TWO WEEKS with a progress report (what, not every three months??)!
3) Their group has a pain management team and she thinks Babygirl should go.  They don't do medications. They don't do counseling.  They do biofeedback and other mind/body connection training, and it's a short but reportedly effective program.

This doctor will coordinate with the provider she wants us to see and the pain management people to try to minimize the number of trips we have to make, since the new doctor is actually located in Wilmington, Delaware.

Hell, what's a few more miles?

DeeDee

Snapped....

Babygirl had her second set of Botox injections on Monday.  The first set resulted in a slight decrease in morning headaches for a few days and then she went back to her baseline.  According to the studies, about 15% of people who have no response to the first set will respond to the second set, so, I paid the $300 co-pay and set up the appointment (knowing, in advance this time, that it will be $1000 out-of-pocket for the procedure.  You gotta do what you gotta do).

After the NP finished the injections, she said, "I don't think you need to come all the way down here in six weeks to tell us how it went.  Just give me a call, and if it isn't working we can talk to nephrology about what the next step should be."

SNAP.

I said nothing.  Not one word - because ANY word I spoke would have gotten social work or security called on me.  I nodded, accepted the discharge papers and left with Babygirl and drove home.  I had plenty on my mind, of course:  Maybelle was acting sick (good actress, it turns out LOL), I'll need to catch up on work, I'm a little sleepy to be driving so far...

Underneath it all was a dark, simmering rage.

These jokers have been working on Babygirl's headaches for over THREE YEARS.  More than two years ago I made one of them develop a list of EVERY SINGLE possible medication they might EVER consider using for her headaches.  I made them do it because I was sick and tired of the "we have to ask nephrology" back-and-forth that took, on average, three weeks for every medication change and dose adjustment.  She's been on the same useless regimen without an increase or adjustment for over EIGHT MONTHS because the HEADACHE doctor is worried about her KIDNEY.

The list is in her chart. It has been vetted by the kidney specialists and the pharmacy team. It outlines what medications can be used, what precautions must be taken if they ARE used, what to watch for, what blood work to order.  ALL THEY NEED TO DO IS CHECK. THE. (add whatever inappropriate descriptor YOU prefer here) LIST.

Tuesday I called our local adult headache specialist and outlined my problem.  He gave me the name of two headache clinics, one in Chicago (OMG!) and one in (you guessed it) Philly.

I called Jefferson University Hospital.  The headache clinic WILL NOT see anyone under 18.  They refer me to a pediatric neurologist (interestingly enough, not the headache clinic at CHOP).  I called, expecting that it would be a few months to get in.

We are going Tuesday.

Getting records to them by then is the big challenge.  Nephrology is willing to send MRI reports and medication lists but not neurology notes.  I'm not all that excited to talk to neurology to ask for those notes, you know?

I sincerely hope it's not a wild goose chase.  At the very least, I hope it opens the door to some new possibilities.

DeeDee

Good Reports All Around....

Babygirl and I left for Philly Sunday afternoon, arriving in time to have dinner with my older brother in a lovely Chinese restaurant.  We laughed over memories of the first time we had ever had Chinese food:  It was a five-star restaurant owned by Danny Kaye in San Francisco. They made my 6'6" brother borrow one of their suit jackets to meet their dress code (picture monkey arms sticking our of short sleeves LOL).  We were with my Aunt Squirrely's family, so we were a party of eleven, seated at one enormous round table with a big lazy Susan in the middle.  The food was amazing, but what was more amazing to me was what we each remembered specifically about the experience.  My brother remembers wishing our parents were a bit more sophisticated, like our Aunt and Uncle.  I remember them being tense with the wait staff about the quality of the rice wine.  I preferred unsophisticated, apparently.

Our visits to the doctors were fine.  Since we had our labs done locally, there were no surprises. We already knew the kidney was doing fine.  There is an odd side effect from one of her headache medications that make her blood too acidic so we need to take more medication to try to help that (up from 5 pills twice a day to 7 of an over-the-counter thing that I literally by by the thousand).  Babygirl tolerated the Botox injections without too much difficulty.

Between appointments we had four hours free, so we walked half a mile to the Indian food kiosk and got lunch, got on the subway, overshot out stop and walked half a mile through downtown Philly to the historic district and took the free walking tour of the US Mint.  It is way cool to watch thousands of fresh pennies running down a conveyor belt!  My phone says we walked 5 1/2 miles.  Babygirl's says we walked 6.  Things that make you go hmmmmm.

But....while we were gone, Maybelle took a turn for the worse.  Hubby sent me a text saying she wouldn't eat or drink, and he couldn't get her up to go outside.  He was really upset, and so was I.  Was I going to make it home in time? Was it time to call and make that last visit with the vet?

So after our last appointment we got in the car and came straight home, cruise control on 72 mph, no breaks.  As soon as I came in the door, Maybelle got up off of her 'deathbed' and came to me, tail wagging, with a big doggy smile.  She immediately asked for a walk, and when we got back she at an entire bowl of food and was prancing around like a puppy.  Hubby, while clearly relieved and happy, kept looking at her and saying, "You little S***.  You scared me to death and made me cry and you were just being a BRAT!"  It was completely hilarious in a totally heartrending way:  She knows she is sick and doesn't want me to go away right now.  Don't worry baby, it's three months before I have to go back to Philly.  By then you'll be over the Rainbow Bridge and all better.

DeeDee

'Lazy' Saturday....

I love this time, earlier in the morning.  Before the day really begins you can sip your coffee, read the paper and imagine that you have the day off and nothing at all to do.  You have a load of laundry in already.  Your blood pressure relaxes, the dogs cuddle up, and you can look out the window and see that the birds are nesting (even if it is still too cool to have it open and hear them sing).  You look forward to a longer-than-usual morning walk with the dogs to enjoy the mild morning.

And then, without warning, your brain wakes up and the lists start creeping in.

There is no food in the house, so you need to make a list and run to Aldi.
And there is no more toilet paper, laundry detergent, hand soap: another list for Walmart.
The coffee is almost out: Tom's.
The car had an emergency repair yesterday:  Stop at your bank and get money from savings to cover that.
Speaking of banks:  Time to close Mom's account, so take the death certificate with you to HER bank.
Oh, and the downstairs toilet seat is broken:  Stop at Home Depot.
Hey, don't forget to mow the lawn:  Oh, nevermind, Babygirl learned how to do that chore!

I love my life, but it would be easier if working for a living didn't eat up so much of my free time.  And I really don't have Sunday afternoon for any of this because we are going to Philly for Monday appointments.  Ah, well.  I can rest after I'm dead as they say.

DeeDee

Enjoying Time.....

In a year where the losses multiply and the family just keeps shrinking, finding a way to peace truly matters. Recognizing moments of humor and grace and enjoying them to the very fullest makes enduring grief so much less horrible.  Our ability to walk mindfully in our world:  To see the spring, to hear the wind, to feel the air; these are the gifts we are given daily, if we will receive them.

Letting ourselves belly-laugh about the absurdities of daily life is infinitely healing:

Dinner conversation: 
Babygirl, answering her phone: "I have to go help Curlygirl bring in her groceries. She says she has condoms and stuff and needs help." W.T.....
Curlygirl, yelling through the phone: "It's KLONDIKE BARS!"
Yeah, I can see the confusion....

So this week I've concentrated on all of that: Being present in the moment.  

DeeDee

Another Loss Coming........

About a month ago I noticed that Maybelle, always a big drooler, had some blood mixed in with the drool.  I assumed at first that she had cut herself on something she had picked up on one of our walks.  (She's surprisingly sneaky.  I once looked down and realized she had an ENTIRE dead squirrel in her mouth.  I was pretty chill about it, I must admit:  "Oh, good girl! Look what you found! Now please drop it..." <Shudder>)

After a week it hadn't stopped and she was refusing to eat her usual chewy treats, so we went to visit Dr Kathy.  Maybelle is a big dog, and she has a disproportionately big head, so getting any kind of good view is a challenge, but there was no obvious problem, so she told me to buy a bag of Greenies and give her one a day for a month and let her know if that didn't clear it all up.

By the end of another three weeks she couldn't chew the Greenies, and the bleeding was noticeably worse after meals.  I began making her softer food and scheduled another appointment.  Meanwhile Hubby and I managed to pry her mouth open and I got a really good look.

It wasn't pretty.  Something big and black and raised had taken over the back third of her tongue.  This was not visible a month ago when she yawned.

By Monday,  we got her to the vet to discover she'd lost nearly five pounds in less than a month. We managed to get her mouth open for Dr Kathy.  In her opinion, it's a malignant melanoma, and she could see that it has spread up into her cheek as well.

"What do you want me to do?" she asked.  "I love this dog," I whispered.

She scheduled us for surgery yesterday to get a biopsy to confirm, and to debulk the tumor to make it easier for Maybelle to swallow.  The surgery was cancelled because the vet was ill, and I had a chance to speak with her today, under slightly less emotional circumstances.  She is as sure as she can be that this thing is malignant.  She is equally sure that debulking the tumor will buy us time, but not much time.  The surgery will be painful to Maybelle, and probably not too helpful.

Hubby and I talked it over.  Right now Maybelle is enjoying her special soft meals.  Right now she is still up for walking two miles twice a day and being friendly with every dog she meets.  Right now, she is feeling okay.

So.  We basically have doggy hospice here.  And when she isn't having any fun anymore, we'll make a final trip to the vet.  Given how quickly she's gotten sick, I wouldn't be surprised if we are back there within the next two weeks.

We brought her home a year ago today.

DeeDee

Year-to-Year Comparisons.....

I realized as I was doing the financial analysis that it was in a bit of a vacuum.  Each time I do it, it feels like the numbers are big, but it's hard to tell how big, exactly.

Before Babygirl got sick I never paid attention to how much we spent on medical care, so I don't have the numbers on what it was costing us in the years before. Despite the fact that our family was much larger, my gut instinct is that unless we had a dental crisis, the overall costs were substantially lower for several reasons:

1) Hubby and I were healthier.  We had fewer medications ourselves, and fewer doctor visits, and therefore fewer co-payments.
2) Our insurance was better.  We had lower co-payments for doctor visits and medications, and I don't recall that we had much of a deductible.
3) Some of the kids had Medicaid as secondary insurance, so they had no medical costs at all to speak of.
4) My income was a LOT higher because I was able to work more hours at a better pay rate, so a surprise medical bill of a couple hundred dollars just didn't have any emotional impact.

That being said, Babygirl was diagnosed with kidney failure in 2011.  We started seeing the financial enormity of the situation as the bills for her first surgery and her dialysis began rolling in at the end of that year, but most of the 2011 bills didn't actually get paid until 2012, which is when I started keeping track for tax purposes.  I myself had become ill been starting at the end of 2010, was out of work completely for the first quarter of 2011, and part time for the next quarter of 2011, so we were already bucks-down by the beginning of 2012 because of THAT.  Each year since, my income has continued to decline and the base pretax cost of health insurance (not calculated or included in the numbers below!) has risen.

So, with that background information, here is a tabulation:

Year         Medical Miles      Total Medical    Monthly Medical   Deductible

2012              14,701                  $19,157                   $1,596                  Yes
2013                3,586                  $12,216                   $1,018                  No
2014                2,545                   $5,500                      $458                   No
2015                2,261                   $8,305                      $692                   No

In 2012 we were quite literally saved from financial disaster by the love and generosity of our church family and many other friends who pitched in and gave us well over $6000 in contributions large and small.

You can guess from the mileage that we made fewer trip to see doctors with Babygirl (one less round trip to judge by the total) last year.  And yet we paid a LOT more.  Some of the bills from both 2014 AND 2015 are still in arbitration and I am not paying on those bills yet.

The 2016 news is not encouraging.  Our insurance's annual 'out of pocket' cost (the new name for 'deductible' I guess) is $4400 for the family.  That isn't so bad, except that that total applies to "Level 1" providers.  It turns out that CHOP is a "Level 2" provider, and our 'out of pocket' costs for Level 2 providers is $8800/year.  Thankfully, this is not in addition to the $4400:  $8800 is the maximum.  This, of course, does NOT include medication and doctor visit co-payments. It appears that they won't hit us for more than 10% of a hospital charge at once.  Babygirl's blood work at CHOP in February was about $11,000 total and we have to pay $1,100 of it, but we had to pay the full $1000 for her Botox injection procedure and the $485 for the nephrologist consultation.  The co-payment for the Botox itself was $300, so the total for one visit was nearly $3000, only about 2/3 of which actually applies to the 'out of pocket' deal.  Add in Hubby's back surgery and, well, I'm writing a lot of checks.

We can save some money by having Babygirl's blood work done at our Level 1 hospital ($550 instead of $1100) instead of at CHOP, so that is the plan going forward since she will need that same blood work done three more times this year at least.

We've gotten used to this.  It is our new 'normal.'  Money that used to go for luxuries, vacations, savings, gifts, contributions....it's medical.  We will retire here at home instead of somewhere warmer. And we are still among the very, very lucky ones.  I have not once had to choose between any medical cost and any true necessity.

DeeDee