At the hands of professionals

Dodging of bullets has become a bit of a sport for me, achieved through the grace of our Lord, Jesus Christ. He alone gives me the presence of mind to LOOK, LISTEN, AND FEEL (as they used to say in the first step of administering CPR) when distraction or stress accompanies various medical procedures. This week I have already dodged two bullets and it’s barely Thursday morning!

BULLET #1

The first bullet came on Monday with a failed attempt to sedate me for a dental procedure. The adult dose of Halcion, administration of nitrous oxide gas, and even a second dose of Halcion wasn’t working correctly to put me down to tolerate the routine treatment of a cavity without seizures. Yeah, that’s my protocol these days and it was still a mess! I was awake during the numbing injections which triggered the onset of the first of many convulsive episodes that day. My gait was unsteady for hours after everything was over. A five-hour nap found me nauseous and weak, ravenously hungry, and traumatized from yet another medical fiasco within a month. The dentist wasn’t even able to complete everything planned that day and said I needed to return for a more involved procedure for the second tooth. The cavity was more extensive than originally expected and would require a crown. Holy cow. It took me self-administering a dose of a binder containing activated charcoal, more long naps, and IV fluids the next day (thank the Lord for the divine scheduling on that one!) to get me to a more stable place. I’m glad the dentist called personally today “to see what I remembered.” I’m not glad he kept giving me drugs so he could get the dental procedure done. I am sicker today than I needed to be. He knows I am a complex patient but whatever. Further, taking simple over-the-counter pain meds for the gum pain today triggered about 30 minutes of tazoring. Lord have mercy! We have crappy dental insurance that doesn’t cover any type of sedation nor more than half of routine office charges. But I digress. I did survive. The caries of one of the two teeth are filled. I have cried quite a bit as well.

BULLET #2

The second bullet came this afternoon during a routine infusion of IV fluids administered to treat autonomic dysfunction and chronic dehydration. These infusions have served to keep me out of the Emergency Room for most of these past 3 years; praise the Lord! The pandemic required me to shift from going to an outpatient clinic to home health services for regular administration of fluids. While services at home bring exposure to COVID-19 right into our living spaces and require more work on my part for set-up and management of both orders and supplies, overall it’s a better option. I can crash in bed afterwards if needed. No need to rally the energy to drive home 30 minutes when exhausted or bother my beloved to drop me off or come and pick me up during his work day. (I also get to watch HGTV when at the hospital which I sorely miss of late!)

The home health nurse who comes to our home is largely about the business of her infusion services when she’s here. She’ll chat some but overall tends to be rather private during her 2 1/2 hour visit. Today she was quite chatty after her delay due to a flat tire on her car, wonderful experience with a Good Samaritan who helped her along the side of the road, and story of her young niece who was undergoing surgery this afternoon for a displaced hip. E moved quickly as she prepared my infusion from supplies I had lain out for her in the mini hospital of our living room. I always have furniture covered with clean sheets and everything available that she needs including my own blood pressure cuff. This all appears to help her get down to business quickly: prepping my skin, setting up a sterile field, priming the Huber needle used to access my port, connecting the tubing and gravity system for the infusion, and organizing supplies for all of the steps in the process. I have hand sanitizer, gloves, a sharps disposal container, and small receptacle for trash at the ready. She gets the infusion going within a few minutes then sits down to do her documentation, take vitals, and schedule the next visit. It’s a routine we both know well.

Today E was about to puncture my chest with the 1 1/2-inch long Huber needle to access my infusa-port when I noticed what looked to be an air pocket at the top of the syringe attached to the needle. I’m used to seeing her push the fluid to the top of the 10 ml syringe before attaching it to the short length of tubing affixed to the Huber needle. She turned towards me to access my port without this important step. I didn’t realize her misstep until afterwards. I just saw a shadow of the air space and blurted out, “is that an air space at the top of the syringe?” She looked up at the syringe elevated in her right hand as I lain on the sectional beneath her. “Yes. Looks like I didn’t push enough fluid into the line.” She pressed the plunger of the syringe to remedy the situation then turned back towards me, bent over, and counted to 3 as the needle punctured my chest wall, largely numbed with compounded Emla cream. She said that it took some work to get a blood return. She drew a waste tube of blood then another for a lab before starting the IV. The entire process took less than 2 minutes.

I understand that they used to say in the old days that a bubble in an IV line could kill you. Or at least cause a stroke! This is no longer true for small amounts of air after extensive research proved this idiom incorrect and protocols were updated. Perhaps so, however virtually every nurse routinely does her due diligence to purge lines from unnecessary air in the lines. It’s part of their training. The filters in the IV systems help as well. The literature I researched today was variable as to how much air was needed in each type of application and venous vs. arterial vessel before damage could follow. Another consideration is the location of the vessel. Air in veins closer to the heart and brain are more susceptible to causing damage; the lungs can absorb an air bubble but it takes time and sometimes special positioning. It also takes time for symptoms to occur followed by testing to locate the culprit. Holy cow. Checking everything every time just seems like a better way to go. Or maybe the patient checking everything every time is a better way to go? It appears that I was below the threshold for known damage to occur. However I did find the following from the Art and Science of Infusion Nursing:

Good clinical practice includes aspiration of air from stopcocks and needle-free connectors before injection and expelling all air from syringes. Most important, even small volumes of air should be considered as potentially consequential.

This applies to intravenous pumps as wall as gravity infusion systems; I am treated in-home with the latter. The threshold appears to be amounts of air greater than 1 ml. If you add the amount in the syringe plus the tubing and Huber needle, I estimate that I would have been slightly above this threshold today. There is no stopcock on the Huber needle assembly before it is connected to the gravity infusion system. Having said this, most documentation of cardiac, pulmonary, stroke, and other damage in the literature appears to have occurred at much higher levels of air. The quote above follows from consideration that where the air bubble goes can determine the type and scope of damage that may follow. Will it be in the heart, brain, or lungs? The Lord only knows! All are to be avoided!

Thank the Lord that I dodged another bullet today! You gave me the presence of mind even after a traumatic dental appointment yesterday that left me with residual amounts of sedation possibly still running through my body, to see a potential risk to my life and ask a simple question. That action may have prevented an unforeseen disaster! I hesitated to question anything in the seconds before seeing the shadow-in-the-syringe and the needle on its way to my body. My nurse was upset already and who am I to question her expertise in administering a procedure she has completed hundreds of times before? I am the patient, the one who is to cooperate with the care being administered. Besides, it would be an exceedingly awkward 2 hours thereafter if I was wrong. But what if I was right? I asked anyways and am the better for it.

As E finished accessing my port, I stated as softly as I could, “how about if we all just relax a bit and re-group now?” She didn’t say anything for a very long time. Geez oh man. I find that it’s often the patient under grace (instead of shock and horror) that has the opportunity to save the moment from disaster while at the hands of the professional. I may be in trauma from all that has transpired this week but still present to what is going on around me. That’s a God-thing. Healthcare professionals are often just too distracted for their own good: from productivity expectations to long shift work and beyond. And they are humans just like me. Lord knows how often I have been the one who was distraught, making a situation more awkward if not dangerous in the Emergency Room, ambulance, or infusion suite. After all, we are all under the direction of the Great Physician who is writing the orders for each of us. Looks like I fulfilled my orders correctly today.

Shall I sign off on my chart/blog tonight with my credentials as a licensed healthcare professional? No, I am not a nurse. Tis better to be humble. Thank you Lord. Your grace sustains me. Whatcha got for tomorrow? (Or dare I ask?) JJ

A tough time to live out our faith

As if my health challenges weren’t enough of a challenge to the veracity of my faith in the Lord Jesus Christ, we Americans enter into the most tumultuous year in recent US history. A false impeachment proceeding of the President of the United States gave way to a pandemic, dramatic changes at every level of society, and social unrest. One could argue that the voices of darkness came out of the woodwork and into the light of day. Just when we thought we might start looking forward to the turn of the calendar into 2021, a tumultuous election process began the further destruction of our institutions. Words don’t even mean the same thing anymore so how may I describe it to those of you who don’t live here, to those who have chosen not to pay close attention? Let’s just say we have entered an exceedingly tough time in which to live.

The story of what is actually going on now depends upon whom you ask. The mainstream media claims that our President has incited a coup and the conservative media claims the opposite. While the majority of the citizenry acknowledge the multiple methods of election fraud that has dominated the courts and legislature since November 3rd, neither of the latter has been willing to hear the evidence in any meaningful way. Thousands of ordinary people giving sworn affidavits under penalty of perjury, expert witnesses, videotaped evidence, the breaking of state constitutional and election laws, manipulation of voting machines, and more suggest that some really bad things happened. But it wasn’t enough to change the outcome? Legislators who claim to support the President, the Republican party, and various causes of their constituents have turned their back on all three of them. This is true even when the President helped them get elected! So on January 6th when these “results” of sorts were set to be certified, a peaceful demonstration escalated into a riot and storming of our nation’s Capitol . . . while the Senate and Congress were in session! They all fled to the basement, the Capitol police eventually did their jobs clearing out the building, and who knows if the National Guard (which our nation was told would be at the ready) ever really showed up? Who were these rioters or who started it anyways? Why did the Capitol police let some of them in? The identities and details vary based upon which news report you view.

We could make the argument that a nation divided cannot stand and we have been divided as a nation for longer than the year 2020. News that lacks truth or even consistency on how basic language is used keeps all of us from communicating with one another and from knowing the truth. Some of our leaders are treating people like cattle to be controlled (or to be tossed little stimulus checks while other nations and special interests are fed gaga-millions), letting you know that we are already sliding from a republic FOR THE PEOPLE to one FOR THE ELITE IN CHARGE. I believe the latter is called socialism and it is now here. Personal freedoms and rights are eroding with each passing day and will accelerate if the democratic candidate actually finds his way into office on January 20th. That’s just 10 days from now. We see even more darkness coming in the policies of the “President-elect,” Republican rhinos, and the entire democratic party who now dominate the Congress, the Senate; the Supreme Court is no where to be found. The gains and goodness of the last 4 years will soon be gone. But wait, there’s more!

Unless a miracle happens, it appears that Republicans who supported President Trump especially conservatives will be punished, persecuted, and stripped of their Constitutional freedoms. This is already happening with restriction of the 1) operations of churches during the pandemic and 2) free speech once expressed on the largest social media platforms in our nation and world. Censorship worsened early in 2020 and it appears is here to stay; the Congress just voted to remove all gender-based language! Just like in the story of the King wearing no clothes, have we forgotten that “President-elect” Joe Biden has dementia? The main stream media that represents our nation to the world does not communicate facts just skewed narratives, blatant lies. And just when conservatives started to develop and pursue alternate platforms for communication, the big media companies started wielding their power to prevent posting information on their platforms; this weekend big tech companies such as Amazon and Google are clamping down further to prevent the download or meaningful use of social media alternatives such as Parler, Rumble, MeWe, and others. Twitter closed the account of and banned a sitting President! Holy cow! Some think that the internet itself will soon be shut down. How are we to communicate with one another much less function as a society? If we were playing a game of chess, we would hear the shriek of, “CHECK!!!” But let’s check our facts Gentle Reader. Is it CHECKMATE just yet? I don’t think so.

Fencing being constructed in front of the White House, Google Earth, 1.10.2021

As I am writing this, there are reports that the President has prepared the US military for special operations in our nation’s capital and beyond. Insiders claim that our military is on the move and there are battleships off the shores of our coasts, military sorties being flown over our skies. Alternative media sources report that President Trump has evidence of illegal if not treasonous activities of government and corporate leaders that go beyond the election fraud or crimes of the Biden family. The insurrection at the Capitol building on Wednesday may have been incited by the same dark, leftist, paramilitary organizations who have destroyed numerous sections of democrat-run cities throughout our nation. However it also appears that individuals somewhere on the political right, maybe even infiltrated by our own special operations military may have been a part of the attempted invasion. All of them appeared to have broken many laws. Five people were killed in the process, personal artifacts may have been confiscated, and much damage was done to the Capitol building. There is evidence that some of the parties involved had a plan of attack that day, that it was not simple mob violence, as evidenced by the tools and riot gear utilized by some of these instigators. I could go on. There are no easy ways to explain what happened this week, this month, this year, or this 4-year term of the Office of the Presidency. We could even ask if all of this evil mayhem is part of a existential “reset” of the USA into a larger plan or world order? Orchestrated and funded by wordily oligarchs? What does it sound like to you?

Those of us in Jesus Christ know who the ruler of this world is and that is Satan. The Bible tells us in the book of Job that he goes about the earth, to and fro wreaking havoc on the lives of the living. His goal is to distract non-believers from coming to know the true and living God then discourage those who do come to faith through the Lord, Jesus Christ. He wants all of us to turn our backs on the truth and our Redeemer, the hope we can find that transcends the evil of our days. We shall see God and spend eternity with Him in glory! He forgets that we see in the Book of Revelation that Satan does not win; Jesus sends him off to be bound then forever tormented in the lake of fire! Forever!

What is going on in the United States of America is frightening. We are at the precipice of losing all we hold dear in our way of life. We may well deserve correction if not punishment in straying from God as a nation. However if we look to President Trump to be our savior from the wrongs in western society then we will be misled and disappointed. President Trump still has a job to do for 10 more days and I believe he will fulfill his leadership duties as best as he can. Maybe his term of office will somehow be extended and a new administration will form? But regardless let’s recognize that Donald J Trump is only a man with flaws just like you and me. He is not God. He will fall short of the lofty expectations we Christians have a tendency to place upon him. He is a sinner like you and me. And we sinners find true rest in the person of Jesus Christ alone. Let’s remember that Our Lord and Savior Jesus Christ is the One with the power to win the battle against good and evil. Vengeance belongs to Him alone; we are to overcome by our belief, our pursuit of what is good and right as best we can and do so as we pray for the wayward, trust in the Lord. He sees and grieves our pain. He will supernaturally calm our fears.

Let’s continue to pray for our leaders, our President, and the resolve of fellow believers in the sovereignty and power of our Lord, Jesus Christ. Let’s pray that others who are scared, looking for direction will find it in Him through the testimony of our lives surrendered to the Lord. We all deserve judgement for our failings but we know where we can receive mercy, grace, salvation, hope. Let’s live like we believe it. This is a really tough time to live out our faith here in the United States of America. Persecuted Christians around the world have endured far worse and found peace in the God of the Bible. Their endurance through trials inspire us that, in His strength and through the leading of the Holy Spirit, we can live the way in which we are now called. Our God reigns! Let us pray without ceasing as we go for His glory! JJ

“Yours, O Lord, is the greatness and the power and the glory and the victory and the majesty, for all that is in the heavens and in the earth is yours. Yours is the kingdom, O Lord, and you are exalted as head above all.” (1 Chronicles 29:11)

Unlinking Google, Facebook, and Paypal Accounts

Things are changing in the United States of America so I want to make sure my financial affairs are under the control of myself and my husband as much as possible. Below is a little guide that I put together on Facebook today so I thought I’d share it here. Perhaps it will be helpful to someone else as well? If you share the entire blog or sections of it, please provide credit to Just Julie Writes at New Hope Beyond. Thanks Gentle Reader and Godspeed in the new year! JJ

$$$ GOOGLE TIP:

Awhile back I was shocked to find out that my Google and personal banking info were linked via PayPal. (Maybe from when I sent $ to a gal who wanted it delivered via Facebook and I sent it to her via Messenger from my PayPal account.) This could happen in a myriad of ways! Somehow Google was in the mix for me; could it be for you as well? I don’t want any of them linked. So today I checked Google and found a few links that I didn’t want in the Store and Settings. You very likely do have one if you have an android phone or YouTube account. Maybe iPhone or other programs too? Here’s how to delete them if you have a Google account.*

FIRST AREA TO CHECK

Go to home page of Google.

In upper left of screen, click on “Store.”

Click on Settings.

Click on Google payments.

Click on Edit payment methods.

Remove any items that you don’t want.

Hit the back button to go back to Settings.

Know that you may have another, non-gmail email address set up as a back-up account, in case you get locked out of your gmail account. Make sure none of these are linked either.

Click on Accounts.

Click on the other email address if listed by selecting Switch Accounts.

Click on Google payments.

Click on Edit payment methods.

Remove any items that you don’t want.

SECOND AREA TO CHECK

Go to home page of Google.

In upper right of screen, click on your picture or whatever icon you use to access your account.

Click on Google Account.

Click on Payments and Subscriptions.

Click on Payment Methods. Select Subscriptions and Services and delete any that you don’t want.

Hit Back button and go to Settings. Look around. Do you want to create a PIN before any $$$ can be sent from you? Do you want your info shared with outside companies?

$$$ FACEBOOK TIP:

Been kinda wondering which online accounts are linked to my financial accounts and thought I would check Facey Bookie. I didn’t realize that they had captured some of my info (PayPal) and that there would be a different method for undoing it than I have posted elsewhere.

Here’s the process.*

In the Search Facebook field, type in Facebook Pay.

Click on Payment Methods.

Click on the 3 dots.

Click on Edit Payment Method.

Check the entire page of info provided. I’ll call it the summary page.

Click on Remove account.

When you go back to the summary page, look for Manage Facebook Pay Info.

Do you want these accounts turned off as well?

$$$ PAYPAL TIP

I was checking some online links to my financial information and realized how many accounts are linked, even ones that are not financial institutions per se. Who knows over the course of time, how many online purchases have led to the linking of accounts. This may be true if you click on an ad on Facebook and make a purchase, use Google in the process and click the wrong button somewhere or who knows how this happens! Surely there are others. So I checked a few things as documented elsewhere today, including PayPal. I discovered that my PayPal, Google, and Facebook accounts were linked for signing in! I don’t want this since I don’t know if that opens up access to other information.

Here’s how to un-link them.*

Log in to your PayPal account.

Click on your name in the upper right corner.

Click on Account Settings.

Click on Log in with PayPal then click on the word “Change.”

Check Merchants and delete any that you don’t want linked in this way. (I think the lure is to simplify logging into multiple accounts.)

Go back to Account Settings and look around.

Even though I thought I had opted out, I found that I had been given a PayPal credit card with a $3,000 credit limit as one of my payment methods. I didn’t want this so deleted it. But be careful if you do this. The next screen asks you where you want your card sent! Say what? I backed out of this page and saw that the PayPal credit card was deleted on the Account Settings page.

Good!

Courtesy of Just Julie Writes at New Hope Beyond.

*Note that I am just a happy little web surfer here and not some techy guru. There may be other steps to take as well. Anything deleted may affect services that you DO want so think it through. Please follow-up with the respective platform for any info, questions, or problems beyond these little tips.

The Aftermath

When another healthcare faux pas takes the life out of my weary stride

It’s easy to give up or rather give in to a despair that never leaves.

Then a new day comes and I have a decision to make

Even if that day begins much later than planned.

I AM sad. No doubt legitimately so

From the treatment I received,

Or rather did not.

Siiiiiiiiiiiigh.

It’s hard.

I’m only human and in my own strength I cannot do this over and over again.

Thank the Lord that you are with me on my bed of sickness every time

Weeping over the trials, the suffering of your child

Promising that one day all will be perfectly well.

I just gotta hang on, hang tough, and trust

‘Cause the journey won’t be wasted

The rewards will be the best ever

When I see my Jesus’ face

My wings flying free.

For all eternity.

Yes indeed!

Is it enough to have overcome the dearth of trials that pain us so in this life?

That’s a question only answered with faith that comes from our Lord.

Our own strength will never be enough. The days are just too evil

Acceleratingly so Gentle Reader. Do you see it too?

Waste no more time wondering just BELIEVE

Get into your Bible right now, go, run!

Our just God’s Word will ring true

On redemption, wondrous glory

As we take rest in His grace.

Today. Join me there.

It is enough and so

Very good too.

After all.

Another Healthcare Faux Pas

When I learned that there might be some pain relief for me if I went to a clinic that specifically focused on headaches, I was encouraged. I have some form of headache or migraine virtually every day. Pain lowers seizure threshold. Neurologists in this specialty have more strategies than typical anti-inflammatory and narcotic pain medications, over-the counter preparations, and the therapies we chronic folks go in and out of all the time, i.e. chiropractic care and physical therapy. I can rarely tolerate pain medication anymore and have used it sparingly my 30 years of chronic pain. Looked to me like there was something more to learn, some hope for a better quality of life, so I asked my Doctor for a referral to a headache clinic. What would I have to lose?

My dignity. Last Monday my dignity took a major hit at another major medical center. Here’s the raw footage from a message that I sent to a friend when I was still in shock.

Had a very odd, traumatic, and disappointing day at the headache clinic at the CC today. Gotta get this out. The MD Fellow with a couple months of experience listened to me, made a new HA diagnosis along with med ideas to try to manage them. This could raise the threshold for the convulsions, providing relief for both the episodes and HA pain. I have a HA every day and both HA and convulsions have been worse. Tweaked my diet recently and at least the HA came down enough to make the trip: 4 hours each way. The building was old and musty. It rained during half of each travel period. I had 2 hours of sleep Sunday night. I was ripe for an episode at some point; short tic attacks in the truck on the way out. Still was hopeful. The telehealth appts with the first 2 CC specialists 2 weeks paved the way for this appointment.

Then the young MD left to review my case with the staff MD; they both returned. We went in person so I could have a more comprehensive neuro exam. All the 2nd neurologist had me do was demo 5 simple range of motion exercises. A disastrous seizure attack ramped up within a minute! Thankfully I could blurt out to get Steve as she tried to coach me on breathing ex in a childlike way. I blurted out that I can’t breathe! She continued. I asked to lie down. The high velocity, repetitive, involuntary movements were injuring my neck n back. It’s terrifying and dangerous. SHE SAID NO! I could not believe my ears. Steve picked me up, my legs hanging, arms curled up, and put me on the exam table. I was able to get into my recovery position that protects my neck. Screams emerged that I cannot control. The pain seared my spine, head, extremities. Then they left. 4 times in this visit I asked to have the door closed (for privacy). 3x they said no so they could hear me if “anything happened.” Like what, I thought to myself. It was already happening. Steve stood nearby for my safety. I heard people walking by in the hallway. This is a HIPPA violation. (Correction: This actually violates their Patient Bill of Rights, posted on the CC website.)

Steve and I found ways to develop a plan. There were 3 violent episodes in total over an hour. The Med Asst came in once (as id’d by her voice, my eyes were pulled closed) and nurses after the 3rd round. I asked for the Doc. My tongue was thick and protruding out of my mouth, pulled to the right. My right arm dangled lifeless towards the floor; left arm curled and tucked in a flexion posture to my chest. This is mixed hemiparesis. But the young Doc had already left the building. The nurse said if it didn’t stop I was to go to the ER. How would I get there like that, I wondered, struggling to communicate and trying not to chew my tongue or trigger a rebound reaction. Finally I could ask Steve to turn out the lights. He put Prednisone in my mouth despite the snot and tears staining and stinging my face. I was able to ask for ice. Putting ice on the back of my neck broke the pain cycle worsening the episode. Like and overfilled balloon losing air, my body started to calm down. It took about 10 minutes.

The nice nurse had gotten a wheelchair. She figured I would be too tired to walk. I blurted out a thank you. I think she had left when I could tell Steve that I was WALKING OUT OF THERE under my own power. Any shred of dignity required it. I grieved so much on and off through this horror and trauma before I could finally sit up and stay up. Time to use the bathroom, wash my face, and get out of there. Soon I was gingerly walking out of there with all parts moving, albeit weakly. There was no one in the hallway. There was no one at their desk. We walked out into the dusk and rain.

Somehow during the first episode I was able to ask the young Doc to write down her recommendations for me. I’m glad I did. She hand wrote on my summary note only wrote 1 of 5 ideas she had for me. I was able to reconstruct the rest of it on our way home. The older Doc must have been the one to write a different, generic diagnosis. Only 1 recommendation was given and it was for a treatment program at CC that I already did at the Mayo Clinic. It made no lasting impact. Steve and I concurred that the older neurologist was of no benefit. He has seen this discounting behavior before. He said it’s why he jumped in to help me while the Doc did some chanting thing.

I’ll message the young Doc tomorrow via the MyChart online portal for her rec again. Hope she can do so for me. I went there for help with HA pain. I have no meds I can tolerate for pain when things get bad. The modalities help some. But with my chiro out with COVID, reg Doc/chiro rescheduling 60% of my appts due to his busy practice, difficulty getting to PT, and increased episodes, I need more tools to lower the pain threshold. The headache-specific tools could be a game-changer. Then I can go back to natural stuff. And be out of bed, able to function more again. Funny how I’m at the book of Job again as I continue to read through the Bible.

I spent the next 2 days largely bed-bound, struggling to function at all. The young Doc returned my message with the same diagnosis and recommendations as the older Doc but did add the name of the 2 classes of medications she had recommended. At least there was something new to pursue with my Family Doctor. I started an herbal remedy for headaches anyways and at day 5, the daily headache had already started to improve. But I still wanted to see their report. Turns out I was in for another shock when it became available 6 days later.

The Progress Note that got posted in my patient portal and I anticipate will be sent to my Family Doctor is a FABLE! The report lists so much false or inaccurate information that I wonder who they are talking about? Numerous tests were never completed but there are results listed for them! Below is my responses from the “Request for Amendment of protested Health Information” filed today in my patient portal on the CC website.

The Progress Note contains falsified information.  The following tests WERE NOT completed:

REVIEW OF SYSTEMS:  None of these questions were asked.  7 mm kidney stone, intractable back pain, arthritis, significant sleep disturbance with Mild Sleep Apnea denied or omitted.

PHYSICAL EXAM for rash (present on both legs), cardiovascular & lungs (no stethoscope exam), vascular (no checks).

CRANIAL NERVES:  No exam completed.  No sensory testing, venous checks.  My tongue protruded to right during the convulsive episode (in your office).

MOTOR EXAM:  No MMT completed of UE or LE.  Right UE hung from table during convulsive episode.

SENSATION:  No one touched me except for vitals.

CEREBELLAR:  Convulsed for total of 60 minutes.  No finger to nose, heel to shin, rapid alt movements completed.

REFLEXES:  All values are false.  No testing completed.  Neither Doctor saw me walk in the room nor had me do toe or tandem walk.

What does the current information say that you believe is inaccurate?

The only PHYSICAL EXAM that was completed was an upper extremity range of motion which was WNL, interview, and vitals.

Multiple false values need to be deleted.  We drove 4 hours each way to have a comprehensive neurological exam completed and all that was done was an interview, observation, and BUE AROM test.  No one touched me to do a physical exam of my heart, lungs, reflexes, cranial nerves, strength or other tests.  Neither Doctor completed the gait tests noted nor saw me ambulate in the room.  Neither Doctor reviewed my Headache Scores with me.  When the BUE AROM test triggered aura then speech changes, searing head/neck pain, tics then a convulsive episode, I struggled to ask to lie down.  Dr. K (the older Doctor who I finally got to see her name when it was stated on the PR) said “NO.” Whiplash re-injury followed from severe involuntary movements.  My husband picked me up and put me on the exam table in a position so I could brace my head from further injury.  Dr. K chanted to breathe deeply.  Sometime later my husband put 60 mg of Prednisone in my mouth.  I do not know when the Doctors left.  Later a nurse checked on me and brought ice for the back of my head/neck and the episode stopped completely within a minute thereafter.

We could have done this verbal exam by tele-health without the trauma of this visit, extensive travel, and false report.  My “After Visit Summary” includes the diagnosis of Chronic Nonintractable Headache, Unspecified Headache Type.  This diagnosis is not on the Progress Report that I anticipate is going to my family practice physician, Dr. J, for continuation of care.  Please add it as an addendum.

Sigh. Big sigh. I have no idea from where they got the physical exam results that are listed in the Progress Report. They are fabricated, false, wrong. The Request for Amendment of Protected Health Information can take 60 days to receive a reply. I looked up the Clinic’s HIPPA policy and Patient Bill of Rights and Responsibilities. Looks like my privacy concerns fit more the latter and that I would have to contact an outside agency to file a complaint. It’s too soon to consider such action. I’ll see what the Request yields. Not sure if I should contact the young Doctor or not. She was actually very professional and listened to me. At the Mayo Clinic, the “MD Fellow” residents are able to file their own report in addition to the supervising physician. At CC, only a report with Dr. K’s signature on it is filed beyond the Visit Summary you get walking out the door (that only contains a preliminary diagnosis, single statement of recommendation, and information I had provided to the patient portal). The gross inaccuracies on the Progress Report from CC renders it useless in my humble opinion.

We’ll see what my Family Doctor says. He is a brilliant diagnostician and loves to review special reports. He’s just too busy most of the time to dig into the differential diagnoses of my case sometimes. Looks like the Docs at CC were also so they made it up. Another healthcare faux pas for sure. Oy vey. JJ