Doctor? Doctor? Are You Listening?
Please set aside your agenda and LISTEN to the patient & the health care advocate.
Since March, my husband has had three surgeries, three 911 calls, four ER visits, three hospital stays, and has averaged at least one doctor appointment a week.
He sees a primary care physician, an endocrinologist, a nephrologist, a cardiologist, a kidney transplant team, a podiatrist, and a ophthalmologist. Yesterday, the primary physician added an eye, ear, nose, and throat doctor to the mix. (Note: The primary care doctor was supposed to refer us to someone that would call us and set up that appointment. That never happened.)
“Doctor? Doctor? Are you listening?”
“I said that my husband is experiencing involuntary movements of his arms. In addition, he is having difficulty navigating from the living room to the bedroom without help. He’s moving as if he was drunk.”
Pharmacist & Doctor: “Those side effects to pantoprazole are extremely rare. I doubt the medication is causing that.”
“Pharmacist/doctor, do I need to video him to prove what I am saying?”
Pharmacist: “I’ll contact your doctor for an alternative. Meanwhile, go ahead and stop taking pantoprazole.”
“Doctor? Doctor? Are you listening?
“I said my husband is very disorientated after taking his morning medications, especially the effient.”
Doctor’s nurse: “He can’t stop taking that medication. How can you be sure that it is the effient?”
“Yesterday and this morning I had him take his morning medications one at a time in fifteen-minute intervals. After the effient, he became very disorientated. Is there any chance that he can take it at bedtime instead of in the morning?
Nurse: “Since it is only once, I suppose he can take it at bedtime.”
“Doctor? Doctor? Are you listening?”
“My husband is experiencing diarrhea several times a day. It seemed to start after he began taking the Trulicity.”
Doctor: “His A1C and daily blood sugar numbers are still too high. I’m going to double his prescription.”
“I just told you I think the prescription is making him sick. How can more of it help?”
Doctor: “We’ll see you again in a month.”
“Doctor? Doctor? Are you listening?”
“Our recent relocation and move created a great deal of stress in our lives and found us ignoring the healthy diet we had been following. His A1C before we moved was 6.0.”
Doctor: “You need to meet with our dietitian.”
“We know we need to get back on track. I know how to get his numbers down and how to count carbs and how to cook healthy.”
Doctor: (I kid you not.) “But do you have a certificate or degree behind your name?”
Doctor? Doctor? Are you listening?
“The medication you gave my husband to increase the effectiveness of the lasix is making my husband dizzy and nauseous.”
Doctor: How can you tell? It might be something else.
“For two mornings, I had him take his morning medications one at a time in fifteen-minute intervals. After the Lasix booster, he became very dizzy and nauseous. This morning he decided to stop taking it.
Doctor: We will see you in a month.
“Doctor? Doctor? Are you listening?”
“Since starting the manual exchanges for dialysis, my husband has been vomiting more than once a day.”
Doctor: His phosphorous is elevated and other numbers are not where they should be. How are you feeling, Sir?
Husband: “I feel like crap. I hate this bloated feeling.”
Doctor: “We need to get his numbers under control. Are you taking the phosphorous binders?”
“Yes.”
Dietician: “You have to stop the dairy products. You can’t drink as much milk as you used to or eat as much cheese.”
“We’ve cut out cheese and milk for the most part. The last milk he had might have been a half cup in the pancakes I made.”
Dietitian: “You need to stop drinking dark sodas as well.”
“We haven’t had soda in our house in I don’t know how long. The only soda we have is ginger ale to calm his stomach.”
Dietitian: “And stay away from processed foods.”
“I make almost everything from scratch.”
Doctor: “I’ll see you in a month.”
Doctor? Doctor? Are you listening?
Doctor: “How’s everything going? Isn’t it great to be on the cycler?”
“When we moved to the nighttime cycler, he is up and sick most of the night. He’s throwing up almost 10 times a day. He carries a basket with him wherever he goes.”
Husband: “I feel like crap. I hate this bloated feeling.”
Doctor: “We need to increase the dialysis prescription from 2,000 ml for an exchange to 2,500 ml.”
Husband: “I already can’t move or sleep because of the 2,000 ml.”
Doctor: “I’ll see you in a month.”
“Doctor? Doctor? Are you listening?”
“My husband is dizzy and disoriented. He can’t formulate sentences. He can’t get from the living room to the bathroom on his own, let alone walk a straight line. He can’t remember, sometimes, what he ate at the last meal. His blood sugars keep dropping. Could the insulin be the problem?”
Physician’s Assistant: “People don’t have adverse reactions to insulin. His sugars probably keep dropping because you are stacking.”
“Stacking?”
Physician’s Assistant: “Stacking is when you don’t wait a minimum of four hours between meals and insulin doses.”
“Ok. We will watch that.”
Later, I popped into the endocrinologist’s office with my husband in tow after being across the street at the dialysis center. He was still dizzy and disoriented. He still couldn’t formulate sentences. He still had trouble walking on his own. AND WE WEREN’T STACKING INSULIN.
“This is what I’ve got. It’s like he is a drunk and high at the same time.”
Physician’s Assistant: “It’s not the insulin. I think I would have him checked for mental problems.”
“Gee, they did that when he was at the ER a week ago. They released him after a few hours and fluid and dextrose push. They found nothing that suggested mental issues.”
Physician’s Assistant: “Well, it’s not the insulin.”
“Doctor? Doctor? Are you listening?”
“With the manual dialysis, we take his vitals before each exchange. Now that he is on the cycler, we check his vitals before he hooks up to the machine in the evening and when he disconnects in the morning. His blood pressure keeps bottoming out. He is dizzy and disoriented. He can’t formulate sentences. He can’t get from the living room to the bathroom on his own, let alone walk a straight line. He can’t remember, sometimes, what he ate at the last meal.”
Doctor: “Who put him on Lisinopril?”
“The nephrologist.”
Doctor: “Let’s cut the blood pressure medication he is taking by half. If it is still low in a couple of days, call us; and let’s schedule a nurse’s check.”
THANK YOU FOR LISTENING.
“Doctor? Doctor? Are you listening?”
“Hubby is still throwing up at least 10 times a day. He is not keeping his medications down. He can’t eat.”
Doctor: (I kid you not, these were his exact words.) “Well, I suppose I could refer you to a gastroenterologist, if you want? Or, you could go see your primary care physician.”
Husband: “We’ll make an appointment with the primary care physician.”
Doctor: “Great. I’ll see you next month.”
“Doctor? Doctor? Are you listening?”
Husband: “I am nauseous most of the time. I can’t keep any food or medication down. I’m up all night.”
Doctor: Says nothing but takes notes. A long pause after my husband finishes his stream of concerns. “You had an MRI of your abdomen in 2015. It showed some gall stones. You had an MRI of your abdomen in 2017. It showed a greater amount of gall stones. It’s more than likely you need to have your gall bladder removed. I’m going to refer you to a surgeon.”
Husband: “Who had the MRIs done?
Doctor: “Your nephrologist.”
“Doctor? Doctor? Are you listening?”
Husband & Me: “Why aren’t you concerned about his nausea and vomiting? Why didn’t you consider that all this was due to his gall bladder?”
Doctor: (I kid you not) “I’m just a kidney doctor.”
“Doctor? Doctor? Are you listening?”
My husband’s gall bladder surgery was a same day surgery. In the wee hours of the next morning, I rushed him to the ER because his one of his incisions was bleeding. They admitted him to the hospital.
“Why all the antibiotics?”
Doctor: “He has diarrhea, and I’m worried that he has an infection.”
“The phosphorus binder he is taking causes him to have diarrhea. All the tests have come back negative, and the surgeon asked that the antibiotics be stopped.”
Doctor: “He still has excessive diarrhea. There still might be an infection.”
“Did you consider that massive antibiotics can also cause diarrhea?”
Doctor: “He is very sick.”
“No shit” went through my mind.
A SHIFT IN OUR STRUGGLE
It took a left heart cath, a diagnosis for bypass surgery, and a heart attack for our experiences with doctors to turn around.
On October 20, my husband began to experience chest pain as we were wrapping up a night of playing cards with his daughter and her boyfriend.
He took two baby aspirin as instructed by the doctor and we finished the game. When his daughter and her boyfriend left, he declared he was beginning to feel better, and that I could run to the pharmacy and pick up his medication refills.
I was ten minutes from home when he called to ask when I would be home, but when I got home, he was on the phone with a 911 operator. I put the dogs on the deck and within minutes the paramedics arrived.
Since our local hospital didn’t have a surgeon that performed open heart surgery, he was transported to St. Thomas Hospital in Nashville.
It was here that we found doctors who actually listened.
“Doctor? Doctor? Are you listening?”
Husband: “So, did I have a heart attack? What does this surgery entail?”
The cardiologist, who we had met during an earlier hospital stay, pulled up a chair and sat down and actually talked with us at length. He not only answered our questions and gave us a great deal of information, but he also wanted to know about us and our life and what gave Hubby motivation in life.
It should be no surprise that this doctor is now my husband’s cardiologist.
THANK YOU, DOCTOR, FOR LISTENING.
“Doctor? Doctor? Are you listening?”
Since Hubby is a diabetic, he was visited in the hospital by an endocrinologist and her nurse practitioner.
Hubby talked about his low blood sugar numbers, his dizziness and disorientation, and his inability to formulate thoughts when his blood sugars were low.
They asked about his insulin prescription.
“You were experiencing hypoglycemia because you were getting too much insulin.”
They understood our concern and frustration.
Husband & Me: “We are trying to mesh a renal diet and a diabetic diet and now a cardiac diet. It’s frustrating.”
Doctor: “Follow the renal and, if necessary, the cardiac diet. We’ll work the insulin to work with those. Not the other way around.”
(NOTE: We decided to switch to the endocrinologists Hubby had seen in the hospital but imagine our surprise yesterday when we received a letter explaining that his current endocrinologist was taking a position elsewhere.”
THANK YOU, DOCTOR, FOR LISTENING
Now all we need to do is secure a new nephrologist, one who listens.
It is so important for your health and the management of your health issues that you and your doctor(s) are a good fit. When it is a good fit, you feel more comfortable discussing your health issues and concerns. When you feel listened to, you are more apt to go into details about how you are feeling.
If your doctor doesn’t seem to be listening, or if you and your doctor don’t seem to be a good fit, there is NOTHING WRONG in seeking out the services of a new doctor.
Hang in there. There is a doctor out there who listens and really wants to help you with your health.
Rebecca (Becky) spent 34 years in a teaching career, but when she retired in 2014, she picked up her pen and pursued her passion to write. As a high school English teacher, Becky held the philosophy that she wouldn’t give any writing assignment that she personally wouldn’t or couldn’t do. That philosophy strengthened and broadened her own writing.
In addition to publishing her writing on various platforms, Becky also blogs at Life is for Living, a blog to encourage, motivate, and help others live the best life possible. As an extension of Life is for Living, she also publishes a weekly newsletter, Let’s Chat. (Check it out HERE.) Life is for Living also has a social media presence with the group Coffee on my Porch. (Check it out HERE.)
After teaching writing for 34 years, Becky began Ink & Keyboard, a blog for writers at all levels. She supplements what she writes on the blog with a subscription newsletter, The Writer’s Notebook (Check it out HERE.) and the social media group Ink & Keyboard (Check it out HERE.)
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