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The Time I didn't really almost Die

​The Time I Didn’t Really Almost Die
by Shelley Pineo-Jensen, Ph.D.
​in five parts
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last updated: 12/20/18
 

Table of Contents
Part I The time I Really Didn't Almost Die (8/23/18)
​Part II Addendum (9/20/18)
Part III  And then the Hospital Bills Started Coming in . . . (9/25/18)
​Part IV Supporting Documents (12/4/18)
Part V Dr. P-J's Response (12/ 7/18)

Part I
​
8/23/18
The Time I Didn’t Really Almost Die
by Shelley Pineo-Jensen, Ph.D.

It all started in late June, when my high sugar level went up to borderline diabetes. The Mayo Clinic says a fasting blood sugar level between 5.6 and 6.9 mmol/L is considered prediabetes. My number came up at 6.4.

Someone from Rappahannock Family Physicians (RFP), my primary care “doctor,” called up and said “Your A1C test came back 6.4. You have diabetes. We have called in prescriptions to your pharmacy to increase your atorvastatin dosage and start you on Metformin.” Then she got off the line. She did not suggest a follow-up visit. She did not suggest a nutritionist or course in type 2 diabetes. She did not tell me about the hideous side-effects of Metformin. She did not ask me how I was doing. She got off the phone as fast as she could.

A few days later the new medicines came in. I started taking them.

A few days after I started taking the Metformin, I developed diarrhea and a stomach ache. I thought it was a bug from attending a recent event. The diarrhea went away after a few days. The stomach ache did not go away and it got a little worse every day.
I developed tingling (pins and needles) in my hands and feet. One of my daughters ordered two books about diabetes and one of the books said that this “neuropathy” was normal with diabetes. I did not know that I was borderline, or prediabetic. I did not know that such symptoms would not be typical for my particular fasting blood sugar level. I called RFP and talked to a nurse for a minute. She said the tingling is normal for people with diabetes and got off the phone quickly. She was impatient with me.

I changed my diet dramatically, removing all known sources of sugar. I started walking 5000 steps a day consistently.

I went to the dentist, where I shared the diagnosis with the dental hygienist. She kindly filled me in on a great deal of information – information that would have been useful coming from RFP. I learned that people who are diagnosed with diabetes usually are sent to a nutritionist, get glucose level detection machines, that they draw blood several times a day to get readings, that metformin has side effects of diarrhea, and other commonly known facts about living with diabetes. She recommended that I see a specialist and recommended the internist of her husband, who is diabetic. I suddenly knew more about my situation and wondered why RFP had not advised exercise and diet changes and had not instructed me in the use of a glucose meter. I still thought I had diabetes, rather than prediabetes.

I called RFP to find out why they didn’t tell me more information. I also wanted to share the increasingly dire symptoms I presented – the tingling was getting worse and I was now experiencing nausea more and more frequently. My stomach was hurting more. Unfortunately, their phone system was not working. I waited on hold for 8 minutes and then was disconnected. I called back and waited on hold for 9 minutes and then was disconnected. The hold message said to press “one” and leave a message but no matter how many times I pressed one, I remained on hold until I was disconnected. I knew that leaving a message was a long shot anyway; my experience is that RFP rarely returns calls.

I was sick and sickly. I started getting tingling in my cheeks. The facial pins and needles grew in area to include the skin around my mouth and eventually my nose. My nose felt like when you get way too much Novocain at the dentist and your nose goes numb. I developed “first bite syndrome” which is pain in the salivary gland with an excruciating pain radiating through the jaw that lasts for five to ten seconds. The tingling in my left leg would feel like electricity was filling up my leg from my foot up to my knee. It would feel like I could not use my left leg to walk. After ten to fifteen seconds, the sensation would disappear, as the nerve agitation would swiftly drain away, from top to bottom. The tingling in my hands was getting worse and sometimes it would feel like my left hand was starting to cramp up. I could still use my muscles to straighten out my hands. I consistently walked 5000 steps a day; when I exercised the tingling in my hands would get worse.

I shared my symptoms with a friend who a retired doctor and he urged me to be more aggressive about calling my health care provider – to call three times a day until they answered my questions about my symptoms. After the many failed attempts to contact RFP, I was pessimistic but more importantly, I was in such poor health that I was no longer thinking clearly. After I ate I would throw up a little. My stomach hurt all the time. The pins and needles in my hands was so distracting and annoying that I did not spend much time on the computer doing my social justice work. I cancelled each meeting I had on my calendar as it came up and took more and longer naps each day. I felt lousy and was not motivated to do my work. I had no confidence that RFP would be willing to talk to me. Every phone call with them was unpleasant and left me feeling that they didn’t want to hear my whiney-ass complaints.

As I lay in bed, unable to sleep due to intense tingling in my arms and legs, feeling queasy, my stomach hurting, I wondered what the point of being on the planet would be if I always felt lousy and was unable to contribute meaningfully to world. I had no energy, no motivation; I felt bad all the time. I was a burden and a bore. I knew that I would not be able to sustain this new “diabetic lifestyle” long term.

On Friday August 10, a woman who works under contract to facilitate my husband’s health care called. She wanted to know how Mike was doing and we discussed his health care issues. Then she asked how I was doing. I told her I was doing lousy and she probed for more information. She was concerned that my symptoms were not consistent with a 6.4 glucose level, had never heard of first bite syndrome, and did not like the tingling in my face. She said she would contact RFP and she or they would call me back.

On Tuesday August 14, someone from RFP called back and discussed my symptoms. I asked why I didn’t have a glucose meter or a trip to a nutritionist. She said she would talk to “the doctor” and get back to me.

I was now so incapacitated that I just watch TV all day, when I wasn’t sleeping. And you know how much I dislike TV . . .

On Thursday August 16, someone from RFP called. She said I should make an appointment with Erin Stewart, the NP-C who is a placeholder for my primary care physician. I have no idea who the actual doctor is who is theoretically my doctor. I said that I wanted to go over my symptoms with someone and she said they already had my symptoms in my chart. I asked why she didn’t want to review my new symptoms, which were worrying me. She said, “What do you want me to do? Tell you to go to the emergency room?” It seemed so sarcastic, but those were actually the correct words. She kept repeating “I’m not a doctor” and she finally said “That’s why you need to make an appointment to see the doctor. I said: “I’m pretty sure Erin’s not a doctor” and she angrily replied, “I’m going to put you on hold.” After ten more minutes on hold a nurse came on, reviewed my symptoms, and asked if I could come down immediately.

So I got over to RFP around 10:00 am. I got in to see Erin around 11:20 am. I went over my symptoms, mention the cramping in my left hand when it was tingling, the nausea and vomiting, a pain that had developed inside my ribcage on the left side, and my greatest worry, the tingling in my face. She informed me that 6.4 is not really considered to be diabetes in some evaluations and that I should stop taking Metformin and call her in a week. I agreed to use an online system because of the difficulty getting through on the phone. As an afterthought, she asked if I would like to get some blood work done and I said yes. She was just as casual about getting the blood work done as she was about my whole situation. She expressed no concern about my debilitating symptoms. I had the blood drawn and went home to another day of tingling, nausea, weird aches and pains, and a constant stomach ache.

On Friday August 17, around 9:30 am, RFP called. The woman said my labs had come back and my levels of potassium and calcium were “dangerously low” and I needed “to go to the emergency room immediately and get infusions.” I told her to call ahead to Mary Washington Hospital and explain the situation.

So I went to Mary Washington Hospital Emergency Room where I was expeditiously installed in a room and hooked up on an Electrocardiogram (EKG) machine. Blood was drawn. An automatic blood pressure machine was hooked up. Every time the blood pressure machine inflated the cuff on my arm the tingling would get much worse and then my hand would cramp up – turning it into a claw. I could not move my thumb back with my muscles and pulled it back to position with my other hand. The nurse said that with my low calcium the BP machine was just aggravating the symptoms and that the cramping was a natural consequence of low calcium. Eventually, she turned the rate of testing down to once an hour after it became clear that my EKG and BP tests were returning normal results. But at one point there were six people in the room. I was interesting and challenging. Calcium is required for the contraction of muscles. The heart is a muscle. Their concern was that my calcium was so low that my heart would stop working.

When my hand was contracting into a claw, I was reminded of Marty McFly in Back to the Future, as he starts fading out of the picture of himself in the future and his hand claws up and he can’t play the guitar any more. But I was also validated. I knew my symptoms were of concern, even though no one at RFP found them to be of any concern at all.

I was admitted to the hospital where I received many, many infusions and they drew samples of blood many, many times. My test result numbers were tracked on a white board where I was encouraged as they rose closer to normal. After about 48 hours, the levels of potassium, calcium and magnesium in my system were restored to within the normal range. The endocrinologist reported that the level of parathyroid enzyme in my system was “abnormally” normal; she concluded that my lack of electrolytes was not caused by malfunction of my thyroid or parathyroid.

The doctors and staff settled on a narrative: the diarrhea and vomiting caused by the Metformin had evacuated the electrolytes out of my system and that the hydrochlorothiazide I was taking for blood pressure had continued to drain off the minerals known as electrolytes. The lack of calcium had caused the tingling. My life had been at risk and I could have just died suddenly. They called it a “perfect storm.”

The doctors, nurses, technicians, and staff at Mary Washington Hospital renewed my faith in the medical profession. Every single employee with whom I spoke was professional and kind.

I am now under the care of the internal medicine specialist recommended by my dental hygienist. I will always be grateful to Mary for her guidance which spurred me to take more action in seeking proper care. I am also grateful to my friend Jay Brock, MD.; he told me to be more aggressive in communicating with my health care provider. His voice was in my head when I was hassling the unresponsive staff at RFP. The woman who helps negotiate the health care system for my husband went above and beyond the call of duty to inquire about my health and to take action to help me survive. 

And most of all, I am grateful to the staff of Mary Washington Hospital for treating me with respect while restoring me to the land of the living. By the time I got to the emergency room, life was really not worth living, but that all changed from the minute I got to the emergency room, starting with the first person I talked to, and extending to my most recent conversation with the endocrinologist who treated me at the hospital and is now continuing my care through Mary Washington Endocrinology Group. She called me personally to discuss my most recent post-hospital labs and continued the professionalism and kindness that has been the hallmark of each and every staff member at Mary Washington Hospital.

I’m lucky to be alive and I’m in a way better mood.
​All smiles.
~ Dr. P-J

Back to the Table of Contents
 

Part II
9/20/18
Addendum
It turns out having my electrolyte levels drop very low (etc.) damaged pretty much every cell in my body. I am slowly recovering my stamina. I am walking many steps every morning, adjusting my diet, tracking my nutrition, negotiating relationships with two new doctors, having new meds added and subtracted every week, tracking my meds with a spread sheet, and grappling with never-ending medical bills.
FAO and WAFA email blasts are now on hiatus and I am no longer updating the WAFA website for upcoming local events. 
It will be months until I am restored to where I was before I took that first Metformin pill. None of this needed to happen - if Rappahannock Family Physicians had responsibly administered my health care and particularly if they had appropriately responded to my concerns.
I advise you to find health care services elsewhere. Their lack of concern and competency could have killed me and certainly sent me to the emergency room.
​~ Dr. P-J

Back to the Table of Contents
 

Part III
9/25/18 (updated 12/3/18)
And then the Hospital Bills Started Coming in . . .
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​
Calculation of Costs (last update 12/3/18)
Sometime after 9/25/15, I had an in-depth conversation with someone in the billing department. As a result of this conversation, the charge for my last visit with Erin Steward was credited to my account. Or so I was told. Hoping this is true.
​Item
Amount
Totals
Rappahannock Family Physicians
RFP 8/16/2018 (charge removed)
$91.13
$0.00
- - - - - - - - - - - - - - -
- - - - - - - - - - - - - - -
​- - - - - - - - - - - - - - -
​Mary Washington Hospital
Value
-
MWH - Hospital Services
$1,341.72
-
MWH - Professional Services
$42.33
-
Emergency Room Doctor
$34.91
-
Hospitalists
$67.18
-
-
-
$1,486.14
​- - - - - - - - - - - - - - -
​- - - - - - - - - - - - - - -
​- - - - - - - - - - - - - - -
Total to date
-
​$1,486.14

Back to the Table of Contents
 

Part IV
12/4/18
Supporting Documents
Email Communication
​
-------------------------
​9/18/18

From: Gail Metts
To: Shelley Pineo-Jensen

Good afternoon,
Here is my email address so you can forward me a link to the website.
Thank you for taking the time to speak with me today and to share your experience here at Rappahannock Family physicians.
 
Gail Metts
Practice Administrator
Rappahannock Family Physicians
120 Executive Center Parkway
Fredericksburg, VA 22401
[email protected]

-------------------------
9/25/18
From: Shelley Pineo-Jensen
To: Gail Metts
Subject: RE: Contact Information
 
Hi Gail Metts,
The hospital bills are starting to roll in.
I have updated my website posting about my brush with death.
56 people have looked at it so far.
I have not made a major effort to publicize this piece of writing.
https://www.pineojensen.org/non-fiction.html
 
Sincerely,
Shelley Pineo-Jensen, Ph.D.

-------------------------
9/28/18
From: Gail Metts
To: Shelley Pineo-Jensen
Good afternoon Dr. Pineo-Jensen,
 
We have received your complaint, and our board of managing physicians has initiated a formal review. Please allow for a working timeframe of ten business days; our response will be issued upon completion thereof.
Quality of care is of paramount concern at Rappahannock Family Physicians. Thank you for bringing this to our attention.

Gail Metts, CFPC
​
-------------------------
10/16/18
From: Gail Metts
To: Shelley Pineo-Jensen

Hello Dr. Pineo-Jensen,
A response from Dr Rafael Hernandez, MD, President Rappahannock Family Physicians is being mailed to your home address.
 
Gail Metts, CFPC
Mail Communication
10/16/18

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Back to the Table of Contents
 

Part IV
12/7/18
Dr. P-J's Response
1) Feelings . . . 
I want Rappahannock Family Physicians to pay my hospital bills because it is their fault that I was hospitalized. I have not asked for damages. I have not claimed pain and suffering. I have not filed a malpractice lawsuit. I let them know about what happened and asked them to pay the hospital bills. I did talk them into crediting my account so I didn't have to pay for that last truly awful visit to their clinic. The one where they ignored my health concerns and sent me home, perhaps to die.

I am offended by the "offer" from Rappahannock Family Physicians. The letter reads that I am somehow guilty of something - I will be punished if I talk about what happened to me. Sued!

What I want to happen is for Rappahannock Family Physicians to pay my hospital bills because they should. I will not be signing any agreement. I have no way of knowing how bad this attack on my health is . . . I still suffer the damage to my system every day. But I sure as hell will sign NO agreement to be silenced. I think people should know that they could be risking their lives when the get medical services at Rappahannock Family Physicians. If RFP does the right thing and pays my bill, I will add that information to this narrative.

2) Communications!
Yesterday, 12/3/18 I did some work on this webpage. Fewer than five people had looked at the page by the end of the work session. Today, 29 people have looked at this page. I did zero publicity! Now that I have finalized the current text on this project, I will do some minor publicity - on my Facebook page, basically. I hope this work will help people to take care of their health and avoid the nightmare I experienced. 
And . . . I will be mailing a link of this page to Rappahannock Family Physicians . . . perhaps they will do the right thing. Stranger things have happened.
​
3) 204 web page hits in December 2018
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Back to the Table of Contents
Shelley Pineo-Jensen, Ph.D.