The Time I Didn’t Really Almost Die by Shelley Pineo-Jensen, Ph.D. in three parts
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
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
Part III 9/25/18 And then the hospital bills started coming in . . .
Coco Cay, Bahamas At Coco Cay, I waded into the water and saw a needle nose fish – transparent mostly, long and skinny with a very long pointy snout. There were little fish as well, yellowish – in schools. As I moved forward I saw that the dark places in the water that I took for cloud shadows or sea weed were actually schools of fish that moved away from me as I approached. On my left I saw two larger log shaped grey fish about three feet long and about 6 inches in diameter. I backed out of the water and went straight for the life guard. We had a little chit chat about whether the fish in the cove were dangerous.
The life guard smirked at me and said that the fish were not dangerous and even if there were barracuda, that they would not bother me. I think the shocked looked on my face caused him to add that if there were any dangerous fish, he would call out to warn me. I decided to rent a flotation raft (or what I would call an “air mattress” but which was made of foam covered in thick plastic). They came in four colors, yellow, green, blue, and what I labeled “red.” The rental guy looked around and then said, “I don’t have any in red but I have these pink ones.” I was corrected on my color description buy the flotation device vendor. I am still amused by that. Not red, pink. In my own defense, may I point out that it was a very dark pink.
So I got it in the water, and arranged the flotation devise crosswise so I could paddle around with just my upper body on it. The water was fine, only a bit cool, but fish bigger than a dollar bill, creamy white with perhaps yellow markings, kept bumping into me. After the third or fourth bump, I struggled my way all the onto the air mattress and looked down into the water – there was a school of the fish swirling around me, stalking me. I thought they might have liked the shade I was creating but perhaps they were smelling/attracted to all that sunscreen I had on. It was equal parts creepy and fascinating. Eventually I drifted away from them or they moved on.
It was easy to paddle around. There was a slight wind that made slight waves that pushed me down to the end of the man-made cove – to the left. I paddled my way to the right side of the cove and then let the wind and wave action push me back to my starting point while I scanned the waters for more fish. I saw none and when I looked up, I had drifted almost out of the cove through the small opening. Surprised I was and I paddled quickly back to the shore in front of the life guard, where I had left my sandals. I pulled the flotation device onto the shore, donned my sandals, and made my way back to the lounge chairs where my daughter was reading her book.
Why the Teacher ate the Donut It was an ordinary day of teaching fifth grade. I came in early; as was often the case my car was among the first in the teachers’ parking lot. I stopped by the staff room to check my mail and noticed a big box of fresh Krispy Kreme donuts on the table. How sweet! I sailed passed the fragrant gorgeous confections, confident that I could skip those empty calories, no matter how well-intentioned the gift.
At lunch time, there were still six donuts left in the box. They were no longer fresh, and any Krispy Kreme devotee can tell you that the donut is best eaten as soon as it is cool enough to wolf down. It was easy pass those donuts up and eat a wholesome lunch.
At the final recess, there were still some donuts left. Someone had carefully cut one of the donuts in half so that only one and a half donuts remained. I laughed out loud – stale Krispy Kreme donuts are not that enticing and yet someone longed for a bit so much she or he had cut one in half.
After school ended, I was forced into a hall-way ambush-meeting with the mother of poor dysfunctional Danny. I had called Danny’s mom the previous day to let her know that students had reported to me that Danny smelled of pee. I checked and he did smell of pee. Upon questioning, Danny had told me that he had slept in his clothes, wet the bed, and not bothered to change his clothes before coming to school. He told me that his mother had to leave for work before he got up, so he and his younger brother got their own breakfast and got themselves ready for school without help. I had called Mom to give her a heads up.
Now here she was, in my face, yelling at me. Danny’s mother was outraged at me! I don’t recall her claim – perhaps she said it was none of my business or defended her mothering. I was stunned and not taking much in. She told me she was going to remove Danny from my class. I told her that this would be a problem for Danny, who had made friends in our class. Their concern for him was not to complain or get anyone in trouble. Nonetheless, she was adamant. She marched off to find the principal.
I sighed for poor Danny and then continued on to the staff room. There was the Krispy Kreme donut box, still sitting on the table. I inspected the contents. There was one (1) donut left. I sat down and ate it. And that is why the teacher ate the donut.