Affordable Health Care....

Since the beginning of this journey I have posted about our ongoing medical expenses.  Before Medicare kicked in we accrued nearly $12,000 in UNcovered medical expenses - deductibles, co-payments, exempted expenses.  And that didn't count non-medical expenses such as travel costs. 

But here's an appalling reality:  Before the passage of the Affordable Health Care Act, Babygirl was covered on my insurance only for as long as she remained a full-time student.  Since it's unlikely that she'll go to college, that means her coverage would end nine months after she turns 18.  THAT means she (we) would have to find some way to cover her medical care, which currently is exceeding $3000/month between prescriptions and doctor visits.  Her last hospital stay was just over $12,000 for four days including the biopsy, anaesthesia, room and board, and medication, and our private insurance is so far saying that it was not medically necessary (um.....she was rejecting her new kidney, but hey!) so they don't plan to pay.

Babygirl will be unable to afford her medications after she graduates.  We will not be able to afford to help her enough to prevent her from rejecting the kidney - remember, you only have to miss TWO DAYS worth of pills to start an irreversible rejection. 

So here's how it would go:  She'd miss pills.  The kidney would die.  She'd go back on dialysis at $170/day and Medicare would restart after three months ($15,500 for dialysis, more for the  meds you need to survive dialysis).  They'd put her on a transplant list, and she might get a new kidney, but Medicare only covers you for three years after transplant, and then the cycle would begin again.

She'd die, either as a consequence of dialysis, or lack of care, or rejection.  And she'd die young.

I know she doesn't have a normal life expectancy.  But I truly think that with decent health care she'll make it out of her twenties!  To me, "dying young" is sometime after fifty.  But without the Affordable Health Care Act, that will be out of the question. 

DeeDee

Speechless.....

Everyone who reads this blog has a grip on what a challenge this has been financially.  We started last year with no back bills, no credit card debt and a big savings account.  We are now maxed out on one credit card, carry a balance for our tolls on another, and are living paycheck to paycheck.  Each trip to Philadelphia costs about $100.  The car needs an expensive repair to get the air conditioning running (not a luxury in our situation since Babygirl really can't take the heat).  And two days ago we discovered we need a part for the pool filter (yeah, that's a luxury, but Babygirl can't swim in a public pool if her immune system isn't working well).  As of yesterday I was wondering where the money would come from for the unexpected trip we have to make tomorrow, but hey, God's been taking care of it, so.....

I have had no less than four people offer to lend us reliable cars with working AC.  I have had one person ask me to get an updated estimate on the repair so they can help pay for it.  And if that's not enough, there was church this morning.

Apparently our church decided to make us a mission project.  Each year we collect money for The Great Fifty Days (the Easter season, a "week of weeks and a day", seven weeks after Easter plus Pentecost Sunday), and the money is donated to some cause, usually some special need outside of our church.  But this morning they called Hubby and me up to the front and presented us with a check.  A LARGE check.  A check big enough to repair the car, get the filter part, get us to Philly, and make a dent in that credit card.

We stood in front of our congregation and cried.  We are not a huge church, number-wise.  I know that people gave who probably could afford it about as well as we can.  I know that this is the most loving, faithful, dedicated bunch of folks that ever, ever gave praise to God on a Sunday.  They feed the hungry, clothe the needy, and go out into the world without hesitation to serve in whatever way they can.

And they love.

 Babygirl couldn't go this morning because her immune system is too weak, so we told her about it when we got home.  We kept it simple, but we went out and bought her a bright red beanbag chair for her room - something she's wanted for a long time that we've had on hold.  Red's her favorite color, and coincidentally the color of Pentecost, representative of the Spirit that moved to give us this gift.

It's tough to make me speechless.  Tough to make me cry in public.  They did both today.

DeeDee

This Trip Brought to You By.......

Remember the money post?  The one right before the emergency run to Philly?  The one that said we had $33 and enough for one trip? 

That trip was supposed to be a one day thing, one meal, one snack, one tank of gas.  It ended up being TWO trips: One for three days with the accompanying meals for two people and two tanks of gas to cover trips to and from my sister-in-law's, and a second trip for follow up (with one meal/snack/tank).  It came to more money than we had available.

But... I'm not kidding about God being good, all the time.  Right after I posted our money status, I got home to find a check that I had written to one of the hospitals had been returned, uncashed, because our insurance had picked up the bill.

Medicare is WORKING.  So we had exactly what we needed.  I'm home from the recheck visit (her numbers are stable, she's going to school tomorrow thankyouverymuch), and we have $39 leftover. We don't need to make another trip until after payday.

I have $6 worth of fish pieces and crumbs.  LOLOL.

DeeDee

Week Fifty-three - That's the Way the Money Goes.....

We didn't qualify for  the medical deduction in 2012, largely because we didn't pay all the bills!  We were negotiating with our insurance for lower co-payments, negotiating with hospitals for lower costs, and waiting to see what, if anything, Medicare would do for us. 

The final word is in:  no decrease in the dialysis co-payments.  The hospitals are re-billing many charges to both insurance companies, trying to make sure THIS time that the billing is in the correct order - first BlueCross/BlueShield, then Medicare, and hopefully most of our remaining balances will be covered. Our insurance company is negotiating with an emergency room provider group to get us a refund on an overcharge from last Father's Day. They are also working to fix a $55 co-payment overcharge from my local doctor.

We got back a sizeable tax refund.  I wrote $5485 to the dialysis company, and I think there may still be a small outstanding balance.  I paid the $490 for the kidney protector.  I wrote out the $75 co-payments for our last dialysis visits, our transplant team visit (10 days pre-transplant) and other miscellaneous specialists.  I paid for the SpeedPass bill (twenty dollars per trip x 14 trips) and updated payment to a credit card that's been picking up overflow expenses (car repairs, tires and oil changes, new toilet, things like that).  I took the girls shopping for spring clothes, especially Babygirl, who had nothing that fit her at all.  I caught up the outstanding dental balance and have enough to pay for Boo'sMom's college class.

We aren't behind on anything.  Gas/electric/phone all current.  Mortgage up to date.  There is plenty of food in the cupboard and Babygirl's lunch account has plenty.

We started this adventure with a pretty solid emergency fund.  There's a couple hundred left. And we are certainly going to qualify for the medical deductible this year between the mileage (23 cents a mile!), the bills, and my lower salary.

I have $33 in my checkbook until payday next week, a tank full of gas thanks to a friend's supermarket discount card, and enough cash to get us back and forth to Philly again because someone in my church handed me an envelope with $100 in it.  And best of all, I have a gift certificate for a massage.

God is good, all the time.

DeeDee

Week Thirty-six......Facing A New Year.....

Last year at this time I thought I was surviving just about the worst thing that had happened to me, ever.  I was on heavy meds for a run of migraines that literally could have killed me.  I was beginning to believe I had permanent brain damage - I couldn't add small numbers, remember big words, pull sentences together (all things of some importance when one makes a living as a physician).  I was not sure I'd ever be able to work again, and was trying to imagine how we'd survive financially.  I had a pregnant teen in the house and was very worried about her.  Hubby's knee was wrecked, my oldest daughter was suffering from post-partum depression, and I'm sure I've left some things off the list of cares and concerns.  I clearly remember thinking, "I can't WAIT until this year is OVER. 2011 has GOT to be better."

Well, the cognitive issues turned out to be the result of the migraine meds, and are mostly better.  Both my daughters are doing fine, and my granddaughters are delightful. Hubby had is knee repaired and is back to work. We had a loving and happy Christmas despite our financial constraints.

But there are new challenges.  My mom's health has been declining and more of her care rests on me.  I am still not able to work full time, so money is tight.  I have another pregnant teen.  Our kids were displaced by the floods, and lost much of what they owned. Hubby's dad died on Christmas Eve.

And Babygirl still needs a kidney. And we are still unable to get her dialysis paid for by either our insurance or medicare.

I certainly can't say I am sad to say goodbye to 2011.  But I am superstitiously afraid to wish for a better year.  Look what it got me last time.

DeeDee

Week Thirty-four - Sing We All of Christmas......

Sing we all Noel!

That's the song in my head tonight.  I sang Babygirl to bed with "O Come All Ye Faithful" a couple of hours ago while the machine hit an alarm I've never seen before ("check to see if heater bag is on the heater and check if heater bag clamp is closed").  Odd one to get when the machine has ALREADY  been pulling fluid from that bag for five minutes, but hey, I checked, the machine believed me and it's been quiet since.

So how are we all doing in our Christmas preparations?  We have our very obese Christmas tree up.  Usually our Nativity set goes up before we have the tree decorated, and setting that up is a family event.  This year I wasn't able to manage it, and my middle daughter set it up on her own (nice job, sweetie!) and got all the empty decoration storage bins out of the dining room where they had been sitting unattended for a week.  There are no outside decorations up.  And our mantle could use a string of lights.  I needed that one to replace a tree set and haven't had the time to get another.

And as for Christmas shopping?  Well, I missed Black Friday.  And I haven't really done anything else.  What I do have, I have wrapped.  But I'm starting to feel a bit pressured - a lot to do, not much money to do it with, and less time.

The bills are starting to pile up.  We haven't heard from Social Security on our Medicare appeal.  I need to get on the phone and talk to them, but tomorrow is already so booked I hardly know what to do first.  And no matter what else I choose to do, I have to be home in time to put the dialysis machine together. I keep asking people to be patient, but you know in your gut that sooner or later you'll owe someone so much that they'll just say, "Hey, we can't treat your kid unless you pay."  And the dialysis bill is the big one - we're up to nearly $5000 and it's being contested by our insurance company.

I despise the idea of using a credit card for either Christmas spending OR for medical bills.  And my paycheck is already showing the 20% cut I had to agree to this year to balance out what I know I am not going to make because of my illness.

"Peace on earth, and good will toward men."

Peace sounds good.  Trust, better.  Faith, great.  Hope?  Wishful thinking some days.

DeeDee

Financial Alternatives.....

With the grim financial information that we have gathered, we have obviously come to the conclusion that we need to do some serious work on balancing the budget.  I don't know anyone in any profession who can cough up an extra $2900/month for any length of time.

I am still disabled.  So I am unable to pick up extra work, which would actually come close to closing that gap.  Hubby is really really needed at home to take care of babygirl so I can continue my almost-full-time work and maintain our health insurance. So we have no immediate way to increase income.

So...cut expenses.  We have already started this process.  We live in a two family house and have been using it as a one family, and are rapidly prepping it to return to two family status.  This will increase our income by $700, and decrease our expenses by $200 (one less power bill).  We are negotiating with our insurance.  Turns out that if you argue a bit, they decrease the copayment for out-of-town specialists (if we don't have one like it in town) and dialysis to $25, so that decreases dialysis costs from $2250/month to $750, and saves us over $100/month on doctor visits.  They will also pick up $900 of the $1000 copay for the surgery, eventually.

And, in two months, she will qualify for Medicare, which will pick up all of our dialysis costs!  Whoohoo!  So we have to hang on, fight, argue, fax, keep copies of EVERYTHING, document, document, document.

And survive.

DeeDee

Week Nineteen - Financial Reassessment......

I don't think it's possible to plan ahead for a medical disaster of epic proportions.  I think that everyone knows that having health insurance is a good idea, but there is no way for anyone, layperson or otherwise, to be able to think up all of the questions that would need to be asked for every possible disease scenario.  Cancer?  Heart disease?  Rare pediatric illness requiring input from several hospitals?  How could anybody know what they might or might not be covered for for diseases they may or may not get?

Here's the general gist of how OUR plan works per visit (yours, of course, would be so different as to make this discussion almost irrelevant except for a 'heads up' about what you don't know):

Our doc: $20
Our in-town walk-in or associated specialists: $25
Our local out-of-town secondary specialists: $75
Tertiary specialists participating in our insurance: $75
Proceedures (surgery, xray, lab etc) done by local specialists: included in office visit
Proceedures done by secondary and tertiary specialists: $1,000 (yes, per visit)
Copayment for dialysis: $75 per treatment (and we "treat" DAILY).


So here's the general gist of how that works out in dollars and cents for our budget:

In December I was hospitalized and transferred to an out-of-network local hospital ($100 for ER and admission, $1,000 for other hospital)
From November to now I have not had one month go by without at least one doctor's appointment for me, all local ($45/month minumum)
In February, hubby had surgery ($25 for surgeon, $75 for anaesthesia, $45 for 2 preliminary doctor visits, and $300 in $25/visit copays for PT)
March, same for me, with slightly less PT
Don't forget dental visits for kids and us ($300) and glasses ($300)
Starting in April, no fewer that 2 visits per week with somebody somewhere for Babygirl, usually not local ($150/week)
Surgery $1,000
Dialysis training week ($75/day = 300)
Daily dialysis from August 22 - now = $900.
Ongoing dialysis costs: $2,250/month.

Current outlay for health care (not counting what I actually PAY for the health care) since November of 2010:

Roughly $6000 in out-of-pocket costs.  And I forgot medication copayments, increased grocery costs to manage Babygirl's horrible diet, gas costs for the frequent 150 mile/round trip to the secondary center, and mileage and tolls for our trips to the tertiary center.  That's all well over $650/month, and that's about to increase due to the daily dialysis to an incredible (drum roll, please....) $2900/month.

Add to this that I've been disabled and on part-time work since mid-December. I am almost out of sick time, and I had 1000 hours banked as of last November.  I also used to work a couple of days a month in the ER or walk-ins for and extra few hundred dollars/month, so that is gone, decreasing our monthly income even more.

I feel a certain nausea thinking about this. No wonder Pollyanna is having such a hard time!

DeeDee

Week Seven - The Financial Realities of Transplantation......

In the huge package of paperwork for the transplant team was a 40 page booklet about what to expect.  Some of it we had already seen, some I knew because of my work.

But I still have not been able to get past the 15 pages entitled "Financial Planning."  Apparently this whole deal could run $100,000/year for dialysis. Her current meds top $700/month (mostly covered).  The transplant year could be half a million. Oh. My.  I made notes, and, with a grim sense of "Holy Crap," I made a some phone calls.

The first one was to our insurance company.  Here's the list of questions and answers:

1) Does our policy pay for kidney transplantation? (Because if not, we're screwed, totally screwed.)
          Yes, it does - but nothing experimental.
2) Is there a lifetime cap on payments for dialysis, transplant and meds?
          No.  Thank you God - there is no cap. So we're good until she isn't a student.
3) Does it pay to harvest a kidney from a living donor (about $90K on average!)?
          Yes. But.......

The "but" is a big one.  We are not covered to screen potential living donors to see if they match.  They can donate a pint of blood for free blood typing (and preliminary HIV/hepatitis screening).  After that it's on us - tissue typing?  Probably $500/person.  Match? Move on.  Screen for kidney function, presence of both kidneys, kidney anatomy, general health and psychiatric evaluation.  This could, I imagine, add up to $10K/person.  Right now I have several on my list. Living donors are covered on out policy from 5 days prior to hospitalization to 3 months after.  It doesn't include travel, income loss, or ongoing disability.  And we aren't permitted to contribute much to that.  There are limits (although I confess I do not yet know what they are) and we must not appear to be "buying" a kidney.

Next was a call to Social Security to get a Medicare application.  Turns out that once you start dialysis or get a kidney transplant, you qualify for Medicare coverage, which will cover 80% of the costs.  They wouldn't let us apply yet (and the woman on the phone was actually unaware that this exception to usual Medicare guidelines even existed!) because we are neither of those things yet, so I have no way of knowing yet whether this would offer us additional coverage on the donor screening issue. We are over income for her to qualify for SSI (disability payments, which are for poorer families to use to help defray non-medical costs of disabities - ramps, travel, income loss,and so on).

By the time we meet the transplant team in July, I'm supposed to have a plan for paying for everything.

It just keeps getting better and better!

DeeDee