Who gets this?

Don’t be this gal!

There have been many times when skills above being a “patient” have helped me navigate the mess that is our American healthcare system. While I am better understanding what it means to be pre-diabetic for example, I am convinced that it takes at least some college education to get the basics done! The following skills are critical.

Organization

Get lots of manila folders in January every new year and label them by categories that make sense to you. For me that means Medications/Supplements, Clinical Summaries, Insurances, Test Results, and one for any new, major diagnosis. Then I have a master notebook with the latest test results that I developed in preparation for a comprehensive evaluation at the Mayo Clinic. While most major healthcare organizations have online patient portals with all of our test results, sometimes your provider (Doctor or other skilled professional) will not be able to access them. Streamline each medical consult by having copies of pertinent reports with you at each appointment. This is particularly true when crossing over from one healthcare organization to another to see a particular specialist. GET YOUR OWN COPY of scans on DVD and go to medical records for the paper reports after each major test, test procedure, or medical procedure. Consider scanning them into Word files for when you are communicating with providers online. Searching for test results on your smart phone via the respective organization’s patient portal could be helpful but you will waste precious time with said provider. Your appointment may be over by the time you log in and access the data!

I first learned about organization when organizing ceramic molds for an occupational therapy department in a mental health hospital as a high school graduate. The patient groups ran more effectively thereafter and my supervisors were thrilled. As time went on it became clear that my love for office supply stores, blank CDs/DVDs, then little thumb drives were good things.

Put Stuff Away

For us, each year of non-medical records gets put into the same box as the same year of tax records. We keep only the past two years of tax record boxes in our home office and the rest go into the attic. After seven years the boxes can get shredded, burned, or otherwise destroyed (if we ever get around to it!). Pertinent folders relating to test results and medical conditions get filed in 4-drawer file cabinets that are alphabetized. Yes, this includes if our files spill-over into more than one file cabinet (as we have 5 of them!). A to C now takes up just one of these cabinets and may change when folders that are no longer needed will get purged. Yes, we don’t buy more file cabinets anymore; I just purge outdated information at least annually and especially when there is no more room for new records. Think it is outdated to worry about paper records? I disagree. There will always be important mail, receipts, reports, legal documents, and other pieces of paper to manage.

Any documents stored on our desktop (or laptop if we had one) should get dumped into an extra, external hard drive (our preference). These can be programmed to backup automatically weekly or to a cloud service in real time.

The importance of filing paperwork for quick access became a critical asset just 2 months ago that could serve to extend my life. I was filing some CT scan reports one weekend when I noticed that NO ONE had followed up on the finding of a new pancreatic cyst. This type of finding requires swift and specialized follow-up which began two days later. I am now in a 6-month surveillance program to make sure the particular type of cyst does not advance into cancer (that is highly fatal). Keeping-and-following good records is as important as the healthcare you seek and doing so could save your life!

Take Notes

We all probably have our favorite place to record information, whether it is on a smart phone app, calendar, daily planner, etc. The key is to be consistent: use the same method all of the time. My Mom was the queen of taking notes on partial slips of paper scattered on the back half of the kitchen counter! Her address “book” was a drawer beyond the sink filled with torn corners of paper, some tucked into the address book with a rubber band around it and some just stacked above or below it. She took out the piles each December to write her Christmas cards and vowed to update the address book before the holiday returned the next year. She never got it done. It was through these handwritten notes we combed when she passed away to make sure that important people in her life were contacted. And it was only then that I came to appreciate seeing her penmanship on pages yellowed, torn, stained, and re-used, that her system really did work for her over her entire life.

Date everything. Write down who you talked to and the phone number you called. Record the prices quoted, deadlines, and most importantly: what to do next. This way the next time you see your note-taking system on a particular topic, you can pick up and continue where the activity last ended. My Mom was an office manager and would probably find me to be a bit compulsive to include all of these data points in my note-taking and filing systems. But I submit to your that our healthcare and the complexity of life require it these days.

I learned the importance of good note-taking when trying to get some specialized cranio-mandibular care covered by any one of 3 insurance companies. I spent dozens and dozens of hours with what became a 2-inch thick folder of notes, letters, and statements accumulated over a year and a half to account for over $5,000 in out-of-pocket charges. I just knew that if some of the charges were coded correctly and sent to the correct payer, we could get such specialized care covered. I was wrong. We have received around $300 in reimbursement! I didn’t know that nearly all of my efforts would be wasted when the original provider offered to help but would not bill insurance directly . . . then did bill two of them . . . using either incorrect or out-of-date codes . . . over and over again. It was a nightmare for all of us involved.

As I write this, there’s a pile of 5 1/2 pages of billing statements, flyers, and notes stapled together and sitting next to me covered with handwritten notes regarding some new medical equipment. So the saga continues yet already I have had $20.28 in charges reversed. Along the way I asked to talk to a supervisor. Yes, I’ve learned who gets what done, aided by my 30+ years working in healthcare myself followed by 8 years of battling a serious illness and its subsequent paperwork. Organize, put stuff away (but not without looking at them first and periodically thereafter) and take notes. Then blog about it or comment below. I’d love to hear from you Gentle Reader. :JJ

The cricket in the ER

It probably would created a shocking gasp on Gray’s Anatomy if T.V. Dr. Meredith Gray saw a black cricket on the floor next to a patient’s gurney.  But there was no fanfare for me.  I just smashed it with my shoe and hopped up onto the bed, not really sure if the nurse had changed the green sheets or not from the previous patient.  Yes, I said GREEN!

St. Joe is a very old hospital, probably as old as the biggest city near where we live.  At one time they had a pediatric and OB ward however it has been farmed out to the larger campus in the Lutheran network of hospitals.  If mothers arrive in the ER in labor then they are put in a transport vehicle of some sort sent to pick her up by the staff at the other campus.  Surely lotsa babies are born en-route or in the parking lot with this crazy system!  Who ever heard of a hospital not delivering babies?  We’ll see no-mo babies any more at St. Joe, just a few black crickets to match the worn linoleum flooring.  I did notice 2 months ago however, that they finally replaced the bedside tray tables — the ones with levers that were duct-taped together!  Now that was sanitary, eh?  Er, no!

The outpatient nurse, Mary, is as sweet as can be.  Since the hospital doesn’t have their own outpatient clinic, her charge nurse assigns both outpatient and ER patients to her caseload.  She runs around the whole time I am there for my monthly appointment.  Yes, I still have my infusa port flushed every month so I use the opportunity to take in some extra fluids if I need them and have any labs ordered to be drawn at the same time.  I just bring a lunch bag, binge on HGTV, and make a day of it!  Unfortunately my appointment in the ER was a bear this past Friday.  Six and one-half hours after arriving, I felt about as much like “toast” as that crushed bug still on the floor when I left.  It shouldn’t have taken that long.  But every month, I end up hanging out with Mary for at least 4 hours for a one-hour procedure.  It’s just the way it goes.

This time, it took the first 3 of those 6 hours to determine that one of the blood work panels would require 15 vials of blood if I were to have it drawn at the ol’ St. Joe!  Maybe I forgot or maybe I never knew that there’s another lab actually closer to our home that has a special kit for this particular panel; the kit enables multiple tests completed from a few vials of blood.  St. Joe could do the panel but I would probably be billed over $400 more and not be able to walk out of there due to the resulting weakness from the drawing of so much blood.  So it was not to be; we just some other routine labs, and finally AFTER EIGHTEEN HOURS OF FASTING, I ate everything I had with me!  I should have taken Mary up on her offer of a box lunch as well.  I was sooooooo hungry!  All of this probably contributed to the convulsive episode that followed the de-access of the infusa port and an extra 3-hour nap the next day.  What a life, I tell ya!

Someday I hope to have the infusa port removed.  My Doc may be reluctant to order this procedure since it was only 3 months ago that I needed six days of IV antibiotics for pneumonia.  That was another fiasco of a story left to another day.  If only I could go to the newer hospital closer to my home this process would be less exhausting.  Can’t do that either in case things should go wrong and I end up in the chamber room of the abusive nurse in the ER who might still work there.  Better check on that one sometime:  does he still work there?   Regardless, I seem to benefit from regular infusions of fluids when Mary flushes my port at the ol’ St. Joe.  Things shall remain status quo for now.

The monthly sojourn to St. Joe will henceforth continue until an insurance denial, a swarm of locusts, or maybe even something wonderful happens first.  Something wonderful?  We can always be hopeful right?  JJ

“So I will restore to you the years that the swarming [a]locust has eaten,
The crawling locust,
The consuming locust,
And the chewing locust,
My great army which I sent among you.
26 You shall eat in plenty and be satisfied,
And praise the name of the Lord your God,
Who has dealt wondrously with you;
And My people shall never be put to shame.
27 Then you shall know that I am in the midst of Israel:
am the Lord your God
And there is no other.”  Joel 2:25-27a

Frequent Flyer Miles

Hospital Christmas Tree, hospital, medical, ID, identification, patient, band

Travel frequently with any major airline and before long you will accumulate Frequent Flyer Miles.  Gather enough points and you can start planning a getaway weekend to someplace warm or maybe remote enough to forget the cares of everyday life.  Oh how I want to cash mine in soon . . .

So I walked into our neighborhood hospital for a test and the gal at the reception desk greeted me by name!  She had my red radiology folder already in-hand, clearly expecting me at any moment (with most of my “HIPPA” paperwork already started!).  Talk about customer service?  Er, no.  More likely it’s a function of my frequent visits to medical practitioners and departments within the past week:  SEVEN OF THEM!

It’s the week before Christmas so I thought I would photograph a few hospital I.D. bands within the bright green branches of a Dwarf Mugo Pine.  Kinda looks pretty, doesn’t it?  Ugh.  I digress. I’m alright, Gentle Reader.  The choking coupled with increased nightly seizures turned out to be symptoms of a sinus infection and all are gradually subsiding with a course of antibiotics.  I’m getting back to baseline.  Too bad they don’t award Frequent Flyer Miles for taking care of yourself or enduring a bumpy flight!

Overall, I am grateful to have these healthcare “destinations” to guide me along my journey towards recovery.  Various medical appointments are my daily occupations of late, mixed in with wrapping a few gifts and trying hard to focus on serving others in this season of giving.   It really does help to put your eyes on the needs of others to help lessen the burden you may be carrying.  I was reminded of this in the middle of this past week, sitting alone in the chapel of our local hospital.  Ever visit one?  They are a sweet oasis when needed.

Thank you my Lord, Jesus Christ, for meeting me there in my own time of need.  So glad you always take a flyer on me when I call . . .  JJ

 

One Day

Friday my Doctor recommended some new supplements to further my care and seemed pleased at some progress revealed in retesting of my gut health.  But neither product is available right now; instead I had to crash in bed that night and most of Saturday.

Yesterday I thought I would work on trimming a sterile plum tree in our backyard that is riddled with black knot disease.  We are trying to save it for a few more years of it’s flowering glory in the Spring and rich wine-colored leaves in the Summer.  It was not to be so today.

Tomorrow I hope that my trial of THC-free hemp oil will resume with receipt of a shipment in the mail.  I didn’t realize when I started it recently, how much I would need nor the extra timing needed for shipments across our country.  This could help resolve the seizure attacks as soon as this week . . . if I get the dosing right . . . and if the next shipment arrives shortly thereafter.  But there was a fire in a warehouse between here and there, threatening my continuity of care.  Maybe I will have enough?  Maybe not?  Lord knows that one day we will have figured this all out!

When today came I thought I might clean our bathrooms and floors then complete an infrared sauna treatment before heading outside.  Instead I was sick.  Only the sauna treatment happened.

Then later and just when it looked like the core of my treatment plan was coming together, another infection sent me and my beloved to the walk-in clinic of our local hospital.  Geez oh man.  Steve offered to take me out to dinner last night but I could not make it.  I was hoping to take a walk with him and the pup in the sunny, 50-degree weather.  Nope, not today.

I cried a lot before proceeding with what we did need to take care of me today.  Life sure is funny.  Perhaps some medical appointments this coming week will clarify what I should do next to get well in addition to responding to urgent changes that seem to come along every few days.  And maybe someday, one day, we will make plans for something fun and they will really happen!

In the meantime,  date nights will be at a clinic or pharmacy at Walgreens or driving to the nearest metropolis for a fancy  NeuroQuant brain scan.  At least in the case of the latter, we got to see a dear friend, Mary, for a quick lunch at Freshii’s in Chicago’s Loop.  Now that’s making the most of a day, eh?

Straining to trust in my Lord this night.  Choosing to trust in His Word and promise to carry me through it all no matter what may be one day for:

There is a time for everything,
    and a season for every activity under the heavens:

    a time to be born and a time to die,
    a time to plant and a time to uproot,
    a time to kill and a time to heal,
    a time to tear down and a time to build,
    a time to weep and a time to laugh,
    a time to mourn and a time to dance,
    a time to scatter stones and a time to gather them,
    a time to embrace and a time to refrain from embracing,
    a time to search and a time to give up,
    a time to keep and a time to throw away,
    a time to tear and a time to mend,
    a time to be silent and a time to speak,
    a time to love and a time to hate,
    a time for war and a time for peace.

What do workers gain from their toil? 10 I have seen the burden God has laid on the human race. 11 He has made everything beautiful in its time.   Ecclesiastes 3

A Tale of 2 Gregs

One made the bag, the other got it in me

The latter carried me for a time, the former will see me from beginning to end.

Both attend to excruciating detail

Their work as professional as it can be:  an example for all who deal in potions for the cure.

The one is seeking her Lord

Whilst the other follows Christ with family, with livelihood reflective of the same over time.

I never knew how this journey would go

And the people, places, and things that would come near for having been allowed this path.

But I must say parts have been worth it

Having known you two has taught me much about life, about overcoming, about getting up each and every day.

So today when your worlds collided over me

I felt humbled at your care, expertise, and willingness to make a difference in my recovery.

Thank you for being on my team

These infusions of life-giving waters will make a difference one day for sure.

Until then carry on dear providers

Your work goes beyond sharing 4 letters of your names to hope beyond this day for sure.

 

You rock!  JJ