The Hairline Fractures....

I'm an avid reader.  Always have been.  Books, road signs, cereal boxes: Whatever is in front of me, I read.  Inevitably, some random line, however unrelated to me in the context in which it was written, will catch my heart and stay for a while. 

Tony Hillerman's daughter Anne has continued his Joe Leaphorn Navajo detective series (one of many genres that I truly love).  Frequently a second author in a series will fail to really manage to get the spirit and the language of the series (although David Langercrantz did well taking over for Steig Larson in the Girl With The Dragon Tattoo series IMO), but so far...

At the end of the very first chapter of her first Leaphorn novel, Spider Woman's Daughter, she uses the phrase, "the damn tears forced their way out, rushing through the hairline cracks in her willpower."

Well.

I had to put the book down for a bit.

If ever there was  a phrase that spoke of what it is like to parent a sick child, this....This is a good one.  

You see, I think I was pretty solid once.  But "solid" and "unbreakable" are not at all the same thing. Drop a china cup once and you'll see what I mean: It goes from "solid" to "shattered" in no time at all!  But even things that are less fragile than china cannot always take being slammed over and over and over again.

Don't get me wrong: Babygirl is doing quite well, for now. She isn't graduating high school on schedule, but she has been asked to attend her prom, which touched my heart far more than I would have thought, pushing tears out "though the hairline cracks in my willpower" far more often than I would have imagined possible, actually.  When a fragile child (oh, she's gonna hate being described that way, I'm betting!), more accurately, a medically fragile child, makes a milestone that you, as a parent, were 100% certain you would not see arrive?  It shines a light in your soul; a bright, happy light.

And all those hairline cracks?  Well, I guess they let more than tears leak out.  

DeeDee

Trolling for Kidney Donors.....

Periodically, my comments box gets hit with requests from people seeking organs for other people. Sometimes it's a one-off, like when we were searching for a kidney for Babygirl.  But more frequently, it looks like this:

"Attention, Welcome to specialist hospital, Are you interested in selling your kidney to overcome all your financial problem, Welcome to M** Hospital. Do you want to buy a Kidney or you want to sell your kidney? Are you seeking for an opportunity to sell your kidney for money due to financial break down and you don?t know what to do, then contact us today and we shall offer you good amount of money for your Kidney we specialize for top class medical treatment like Heart Surgery, Cancer Care, Spinal fusion surgery , sleeve mastectomy surgery , and other major surgeries. Contact (k***@gmail.com) INFORMATION NEEDED: Passport Copy: First Names: Last Name: Sex: Age: Your blood group: Date of Birth: Phone Number: Occupation: Monthly Income: Reason for selling: Do you smoke?: Country: State:"

Or this:

"We are urgently in need of kidney donors in K** Hospital India for the sum of $450,000,00,All donors are to reply via Email only Email: k***hospital@gmail.com WhatsApp +91 555-555-5555"

(At least in these examples things are generally spelled correctly. In many, some from the same locations, there are misspellings which I suspect are deliberate attempts to avoid spam filters.)

$450,000 seems to be the standard going rate for a kidney, and it hasn't changed any over the past year or so.  

It's appalling from just about every conceivable angle.  

When Babygirl was waiting for her kidney transplant, someone suggested that we go to India and buy a kidney. Rupee against the dollar, it's not that expensive to stay in India, but I've no idea at all what hospital care costs. Most of the doctors are trained in Brittish-style medical schools, but the hospitals can be anywhere from world-class to third-world in quality.  But the ethical issue is this:  No one rich sells their kidney.  A system that allows for organ sales inevitalbly takes unmerciful advantage of the poor; most likely not to their ultimate benefit. (This is a bit dry, but it does cover the topic well: Bioethics of buying and selling organs)

That being said, one would think that India has an almost unlimited number of people so poor they would most happily sell an organ.  So why is it that these people are advertising over here, and for such an incredibly high price?? What's the catch?  

I almost expect that I will get requests for the email addresses and phone numbers from people who are willing to find out. I scares me more than a little. 

DeeDee

Expanding the Garden....

A patient today mentioned getting blood work done at one of our local draw stations, and it triggered a memory of my mom.  The station he went to was the one closest to her house, and before the floods a few years ago, it was a busy doctors' office.  Like many of the practices, it was nicely landscaped.


My mom and her best friend noticed the flowers. They admired the flowers.  In fact, they coveted the flowers. After a couple of years, they noticed that the perennials were getting pretty dense, and maybe someone helpful should thin out the bulbs?


So one day, they dressed in workman-like clothing, drove up with tools and mulch, and worked on the gardens at the doctors' office for a couple of hours.  They did this in broad daylight, rightly figuring that doing this at night would make them look suspicious. They pretended to be professional gardeners, neatly thinning out plants and quietly taking the excess bulbs and shoots home to plant in their own flower beds. 


Yup.  My mom stole flowers from the nuns.


You cannot beat the chutzpah of old ladies. 


Squeaker and I plan to plant some seeds for the garden this weekend. I think I will not share this story with him....yet.


DeeDee

That's the Way the Money Goes...

It's that time of year again: That fun-filled season of receipts and record keeping that allows us to get our own money back from the government. It's time to see if having chronic kidney disease pays, right?

Such is life.

But there is good news, on the medical financial front: Costs are down all the way around.

Last year, medications cost us a total of $3416.  This year, that's up a bit to $3509.  That rise is uglier than it looks because LAST year we paid two $300 copayments for Botox. 

Last year's doctor/hospital total was $7302.  This year we're down to $5893 (plus $463 for glasses, which I somehow think we failed to get for anybody last year).

Parking went down from $157 to $112, and medical mileage from 3,040 to 2,111, which gives us $401 mileage expense.

That makes the grand total $7415, about $618/month, almost $400 less/month than last year.

That being said, there were still more than a couple of times when I couldn't pay the bills in front of me with the money in front of me, and had to work out payment schedules (for a period of 4 months, I had three different hospitals on autopay), but at no time was I behind on anything, and all of the bills were paid by the end of the year.

More interesting, from a My-Kid-Has-A-Chronic-Disease perspective, Babygirl is no longer the person whose bills are the highest. She is only on a handful of prescription medications, and hers are all generics.  Hubby is the worst on the prescription costs, with me a close second.  I'm the only one of us who was hospitalized in 2017, although Hubby's pain management bills were nearly as high as that little bill. I had some MASSIVE dental bills last year. Having all of Babygirl's blood work done HERE instead of in Philadelphia has saved us literally thousands of dollars. Best of all, she's likely to qualify for Medicaid this year, taking almost all of her medical costs off the table entirely. 

We won't make the medical deductable this year.  We'd have to have a taxable income under $74,100 to deduct even $50 of it, and I do make more than that (we have made the medical deduction cutoff three different times, so it's worth the trouble of combing through every single credit card record, bank statement and receipt LOL), so we are very blessed this year all the way around.

DeeDee

Nine Hundred Dollar Headache...

Sometime earlier this year I had a week of migraines.  Not as bad as a few years ago, but a definite escalation of symptoms over normal.  I did my best to get them knocked down, but when I developed an aura within an hour of taking a migraine rescue medication, I tossed in the towel and went to the ED. Endless Artificial Energy....

The final bills are all in.

The total cost for a roughly 5 hour stay (2 of which I passed in the waiting area) with no lab work or x-rays of any kind was just under $2000.  My portion?  Just under $900. 

If I had known that the day I had the headache would I have made a different choice about where I got my care?  Likely not.  I couldn't keep fluids down very well, couldn't keep my eyes open if the lights were on, and I needed to get it under control before it did brain damage.  Yeah, I needed to be there.  And the bottom line for us is that if I don't make the deductible, someone else will, like Babygirl, yesterday. 

But if I didn't have a bank account with a cushion set aside to meet that deductible?  If I knew that I'd have to choose between needed monthly medications, or groceries, and that ED bill?  I'd likely have tried to tough it out somehow. 

We are blessed enough to know that we will be okay.  We've been through some miserable times and learned that you can't plan ahead for everything, but we DO plan ahead, and the reall blessing is that we CAN. 

I see people every single day who can't - who make such low wages that the idea of having $100 socked away for an emergency is beyond imagination, let alone $1000 or more.  I just wrote checks for that emergeny bill, for about $400 for Babygirl's last visit to Philly, and another $900 for dental bills.  Generally speaking, I don't think healthcare should be a luxury.

DeeDee

St. Pat's in the ER......

Since my mom died a little over 2 years ago I haven't  had to hang out with anybody in the ER (except me:  The last THREE ER visits for the family have been me.  No - wait - I think Curlygirl had one... it's all a blur LOL).  Generally speaking, though, I haven't been in an emergency room wondering if I'm going to need to run home and pack a suitcase in preparation for a 4 -hour ambulance ride.

But last week Squeaker turned 6, and invited a dozen of his closest little germ-vector cousins to come over and tear his house apart to celebrate.  It was a 3-hour madhouse of screaming kids, jabbering moms and dads, and cake.  Since then, everyone in the house has come down with something:  Squeaks had a high fever and a bellyache for a few days, I've had a cold, Curlygirl is achy and incredibly weak.

Yesterday Babygirl spiked a fever of 103, took some aspirin and it went away.  She told me about it this morning.  I reminded her that fevers are important, and she needs to tell me, but she looked quite well, so we worked the concession stand for the basketball games at church, did grocery shopping and ran errands, and she was fine. 

At 8:30 she sent me at text (it's our version of an intercom - her bedroom is on the third floor - don't judge me!) letting me know that she had a temp of 101.2 and she needed some medicine.  She had taken some aspirin about an hour earlier when she had some bad chills but wasn't really feeling better.  I preregistered for the ER with In Quicker ("fever/kidney transplant/safer to wait at home) and got a call back from a nurse within 5 minutes:  Don't wait. Come in now.  On the way in she started coughing hard enough to gag. Her temp was 103.3 by the time we arrived, and her heart was racing.

By 9:30 she was roomed and tests were in progress, and by midnight we were given a diagnosis of presumed influenza.  We're waiting for the second liter of fluid to finish running in, and then we're out.  The doctor was kind enough to push some meds to help with the migtraine du jour as well. 

It's good to know that we don't need to leave town. It's good to know that she can safely be considered to have a viral illness and sent home.  It's wonderful to know she has enough white blood cells to fight this off.

But.  Squeaker had fevers this high for three or four days, and I told Curlygirl to keep him home because it was so clearly viral.  We still can't take that chance with Babygirl. And we never will be able to.

DeeDee

What Would It Be Like.....

When Babygirl turned 18 in September, I put in an application for her for Social Security Income.  She qualified at age 11, when she was first diagnosed with kidney failure, but did NOT get it because of my income:  It's 'needs based.'  But at this point she is still struggling to finish high school, has headaches at least four days a week, has an immune system too weak for her to work with the public and handle money, and she can't see well enough to get a driver's lisence, so....what kind of work can she do?

The majority of people under the age of 50 who apply for Social Security are denied, at least initially.  Babygirl qualified on the first try. 

So this morning we went to the credit union to set up an account for her so Social Security can direct deposit her checks.  During the process we decided she needs a checking account so she can take over paying her own medical bills, and added my name to her accounts in case she gets too sick to manage her money at some point.

On the way out of the bank, she asked, "I wonder what it would be like to be healthy?  I mean, it probably would be less expensive...."

Oh. My. Freaking. God.

Yeah, it would be different.  We'd be setting up an account so you could deposit money from your first job. I'd never even consider putting my name on it.  We'd be going out for breakfast instead of trying to figure out why the local Social Security office doesn't have ANY parking within a quarter mile of the place and, good God Almighty, child! "Less expensive"????

College would be expensive.  A new CAR would be expensive. An apartment of your very own would be expensive.  I'd happily bankrupt myself to pay for ALL of it if it meant you never, EVER had to wonder what good health felt like.

DeeDee