Saturday, June 23, 2018

...So She's All Right Now, Right?.....

I saw a note on Facebook about a local teen missing graduation because he just got a heart transplant. "Thank God he's going to be all right!" is the general gist of the comments. People have no idea at all how difficult this child's next year is going to be.

People are generally kind, and mean well overall.  But as the parent of a chronically ill child (and the wife of a chronic pain patient), I've come to the realization that many people really don't quite "get it" when it comes to what the word "chronic" actually means.

When people learn of Babygirl's kidney failure and subsequent transplant, the commonest response I hear is, "So she's fine NOW, right?"  It's like the question I was frequently asked when she first needed dialysis:  "Is it BOTH of her kidneys?" Neither of these questions make sense to me, as a doctor.  As a special needs parent, even less so.

"Yes, she's fine unless you're concerned at all about the anti-rejection medications that supress her immune system and make it possible for her to get very sick very quickly and increase her risk of getting cancer.  And transplanted kidneys only live about 15 years on average."  "You mean she has to take those meds for the rest of her LIFE??"  Well....yes. At least until the current kidney fails and she goes back on dialysis and waits for another transplant.

The same thing happens to Hubby.  "You mean the surgery didn't fix your back?"  Well, it un-paralyzed his leg, so he can walk again, but his back will never be okay - that really wasn't what the surgery was for.  He gets asked this so often (and honestly, by the same people over and over) that he doesn't even want to go out.  He's tired of talking about his back. Ask him about the Rumble Ponies or something for crying out loud.

I read this article recently: The Isolation of Special Needs Parents. While the author appears to have a child with considerable physical disability, it applies to us nevertheless.  The part about not being able to REALLY talk about it without sounding as if you have no joy in your life, or don't want to be that child's parent, is very true.  "How's Babygirl?"  "She's doing fine, thank you." is commonly the extent of my conversation on the subject.  I get tired of explaining that she isn't fine in a hundred different ways, and that I'm not always fine with THAT.  Being able to tell truly supportive folks from emotional ambulance chasers has become an art form.

I belong to a group of kidney kids' parents online, and the support is pretty amazing.  Where else can a parent toss out a question about the color and quantity of their kid's pee and get a real answer? Who else can you ask, "Did your kid ever take this medicine?  What happened?" Where else can you go for a list of what you need to pack for a long hospital stay?

It's been more than seven years since she was "all right."  We're just doing as well as we can.

Pray for that teen with the new heart. Pray for his family, for strength for the journey ahead of them.


Saturday, June 2, 2018

Lorna Doones and Ball Gowns.....

Babygirl's long struggle with the education system has left us missing some monumentous milestones.  Unlike her many sisters, I haven't had to shop for party dresses (there used to be a website called that was a favorite), or annual spring and fall school clothes.  She didn't attend her 8th grade dance.  HIgh school graduation is still a distant hope.

This past two years, a few co-workers and friends who have kids her age have been sharing pictures:  Prom gowns and tuxes, limos and fancy dinners, caps and gowns.  I'm happy for them, truly.  But it made me understand, a little, how infertile women feel at baby showers:  That's just not going to happen for my kid.  So I smile and say the right things (and sincerely mean them all!) and then grieve for what she's lost.

But Babygirl has a friend from school who hasn't left her behind.  She's graduating this year, and she invited Babygirl to the Prom.

So.  This happened:

Babygirl and I went shopping.  Got shoes, a dress, accessories.  Curlygirl took her for a mani/pedi and makeup, and did her hair (and since I paid for her Cosmetology education, I figure that was about the most expensive hairdo I've ever bought).

Babygirl and her friend got dressed here at the house.  And her friend handed me an envelope for prom photo packages. So while they were finishing pinning curls up on the third floor, I came downstairs to wrestle with my checkbook to see how much I was willing to pay for bad prom pictures.

You never know, ever, when a memory is going to take over an already emotionally-charged day and hit you right in the tear ducts, but:  I dropped back to 2001.  We had just expanded from 2 kids to 6 overnight. We'd needed beds, clothes, everything.  Money was tight, VERY tight.  I had school photo packets in my hands, and needed to be able to write checks, RIGHT NOW, for money I simply didn't have.  My mom found me crying on the back porch, and wrote three checks for $17 so three little girls (two of whom had just arrived and were virtual strangers to her) could have their pictures done.  

I sat with my checkbook and wept for a bit, missing the women who made the hard things in my life possible:  Mom, Grandma, Bobbe - and so many more.  

And then I spotted the package of Lorna Doones.  

Backstory:  I've donated blood all of my adult life, and joked that I really only came for the cookies.  So a few years ago, when the Red Cross switched to Cheez It crackers, I complained.  My friend Marj mans the snack table at the church blood drives, and she noticed.  Last blood drive, she bought a box of Lorna Doone cookie packs, just for me. I swiped an extra pack for the road, and forgot about them.

I hadn't had lunch, dinner was still a long way off, and I was thirsty and tired. I grabbed a can of seltzer an opened my little pack of crumbled cookies and ate and drank like it was communion, and it was:  The communion of Women Who Support Each Other.  A reminder that there are still, and always will be, women friends in my life who would drop everything, do anything, be anywhere.  I washed my face, wrote a check, and went upstairs, saying a prayer that Babygirl will always have that same support.  

She's got a good start.


And that's all I can ask for her.


PS Oh, and that check?  It got left on the floor of the bedroom during the prom-gown excitement.  But it was never the issue anyway, was it?

Sunday, May 6, 2018

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."


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.  


Monday, April 9, 2018

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*** 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*** 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. 


Thursday, April 5, 2018

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.


Sunday, March 25, 2018

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.


Sunday, March 18, 2018

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.