Diabetes is Goliath, and researchers often feel like David. How are we ever going to take down such a huge opponent? Where is the cure?
I want those researchers to focus on the cure. But I also support work that looks into how we can live well alongside the beast that is diabetes.
But I have been seeing a lot of angry comments swirling around the internet regarding support of non-cure based research, especially pertaining to the artificial pancreas.
"We don't want another fancy pump! We want a cure!"
"The artificial pancreas is just another money-making device for big pharma! We want a cure!"
I understand. I have had diabetes for 20 years and would give anything to not have it. I would be delighted to be "out of a job" in caring for kids with Type I. There are few other wishes I use on birthday candles and fallen eyelashes.
But I still have a hard time fully sympathizing with those sentiments.
I gave a lecture this past week to first year medical students. They wanted to learn about the dual-hormone artificial pancreas, but starting there would be like picking up a book and reading the second to last chapter first. I had to start from the beginning to help them really appreciate how significant the artificial pancreas will be.
We went over how doctors did not even know that a lack of insulin was what caused diabetes for the 3,500 years it was recognized as an illness. How people died within a year of diagnosis from starvation until Drs. Banting and Best discovered how to effectively use insulin. How the insulin had to be drawn into glass syringes that had to be sterilized with heat and how the very long, very thick needles had to be hand-sharpened each day. And about how the insulin came from animals, which created a series of side-effects in many patients until human insulin was able to be synthesized. And once we had human insulin, things improved again with fast-acting Humalog/Novolog and long-acting Lantus. Insulin pumps were invented and refined year after year.
We also discussed how the measure of insulin's effectiveness could only be examined through urine, then through cumbersome blood tests, and ultimately with the advent of continuous glucose monitoring.
We have made such amazing strides in the last 90 years, but mostly rapidly within the last 30 years. Lantus came out when I was in high school and completely changed my quality of life -- no more rigid time schedules, no more inflexible meal plans. I felt like my day wasn't dictated by diabetes in nearly the same way it had been for so many years. And when pump technology improved, it changed my life for the better tenfold. And my CGM is the only reason I have been able to maintain the tight control that I'm in now.
It is hard to appreciate how far we've come when all you have known is pumps and CGGs. All of these advancements were only possible through research - in petri dishes, in animals, in humans. Research gave us these gifts.
The development of refined insulin saved millions of lives. But what if we had stopped there and only focused on the cure? We wouldn't have any of the amazing products that help us live well with diabetes today.
The artificial pancreas is going to be the next big life-changer. The preliminary data is astounding, with Dr. Damiano's study giving trial patients projected A1Cs of 6.3% with less work than they put into their diabetes now. Why would we not support this? Researchers are devoting their lives to this work and many have children and other family members with Type 1 Diabetes. They hunger for the cure, too. But they hope to make life with diabetes better in the meantime.
People often mistakenly believe that supporting non-cure based research detracts from finding the cure. There are armies of researchers trying to realize hundreds of different possibilities. Projects are taking place simultaneously all over the world to treat, prevent, AND cure diabetes.
Shouldn't we continue to tackle this beast from all angles? My answer to that question will always be yes.
And in this way, we'll eventually take it down.
Saturday, September 28, 2013
Sunday, September 22, 2013
Grinch
I don’t like denying patients anything. I always try to find a way to make things work. An appointment time on a day I don’t usually work? I can swing that. A diabetes supply that isn’t covered by their insurance? I will do my best to figure something out.
But the other day I was asked to sign off on a wish – of the Make-a-Wish variety. Except the Make-a-Wish foundation had already deemed the patient medically unqualified for their services, so they forwarded the requested wish to a similar foundation. That foundation called me.
I asked them what their criteria are for granting wishes so I could better assess this patient’s qualifications. They told me they fund wishes for children aged 2 ½ to 18 years with “life-threatening illnesses” that are either “progressive, degenetrative, or debilitating.”
I mulled it over in my mind.
Is diabetes a life-threatening illness? Yes, it can be.
Is it progressive? Maybe. Taming it does not always become MORE difficult over time, but some people do develop hypoglycemia unawareness later in life.
Degenerative? No, that term is usually reserved for horrible neurologic diseases that render patients unable to communicate, feed themselves, ambulate, etc.
Debilitating? Yes. But only with poor control for years and years. And even then, it isn’t debilitating for everyone.
Our office knows this patient well. His family is lovely and his father has a prominent position in the community. His diabetes has been impressively controlled since he was diagnosed seven years prior. He actively participates in multiple sports and after-school activities. He is planning on attending a competitive university. Diabetes has never held him back and was showing no signs that it ever would.
I decided that I had no choice but to sign that the patient was not medically eligible for the wish as he did not meet the criteria put forth by the organization. The woman on the phone – clearly seeking the opposite answer – told me that their criteria are “more open to interpretation” than those of the Make-A-Wish Foundation.
I mulled this over, as well.
There are other patients in our practice that qualify to have the rules bent a little more in their favor. For instance, there is a child that had to be taken from his home because his father is in jail and his mother has a drug addiction that left her unable to care for him and his diabetes. Foster homes are difficult for ANY child, but even more so for him because few families are willing to undergo the training and devote the time necessary to care for a child with diabetes. His diabetes is holding him back and making his life palpably more difficult – a life that is gut-wrenchingly difficult already.
It made me uncomfortable to tell the foundation representative that I could not sign off on the request, even though this particular patient is living such a full and vibrant life.
“It breaks my heart to have to call them and tell them they were denied,” she said to me.
“I’m sorry. But it breaks my heart even more to use your funds on this request that would be better served for a child that needs it more,” I responded. I signed the denial and faxed the form with resolve.
Nevertheless, I have felt like a grinch ever since.
But the other day I was asked to sign off on a wish – of the Make-a-Wish variety. Except the Make-a-Wish foundation had already deemed the patient medically unqualified for their services, so they forwarded the requested wish to a similar foundation. That foundation called me.
I asked them what their criteria are for granting wishes so I could better assess this patient’s qualifications. They told me they fund wishes for children aged 2 ½ to 18 years with “life-threatening illnesses” that are either “progressive, degenetrative, or debilitating.”
I mulled it over in my mind.
Is diabetes a life-threatening illness? Yes, it can be.
Is it progressive? Maybe. Taming it does not always become MORE difficult over time, but some people do develop hypoglycemia unawareness later in life.
Degenerative? No, that term is usually reserved for horrible neurologic diseases that render patients unable to communicate, feed themselves, ambulate, etc.
Debilitating? Yes. But only with poor control for years and years. And even then, it isn’t debilitating for everyone.
Our office knows this patient well. His family is lovely and his father has a prominent position in the community. His diabetes has been impressively controlled since he was diagnosed seven years prior. He actively participates in multiple sports and after-school activities. He is planning on attending a competitive university. Diabetes has never held him back and was showing no signs that it ever would.
I decided that I had no choice but to sign that the patient was not medically eligible for the wish as he did not meet the criteria put forth by the organization. The woman on the phone – clearly seeking the opposite answer – told me that their criteria are “more open to interpretation” than those of the Make-A-Wish Foundation.
I mulled this over, as well.
There are other patients in our practice that qualify to have the rules bent a little more in their favor. For instance, there is a child that had to be taken from his home because his father is in jail and his mother has a drug addiction that left her unable to care for him and his diabetes. Foster homes are difficult for ANY child, but even more so for him because few families are willing to undergo the training and devote the time necessary to care for a child with diabetes. His diabetes is holding him back and making his life palpably more difficult – a life that is gut-wrenchingly difficult already.
It made me uncomfortable to tell the foundation representative that I could not sign off on the request, even though this particular patient is living such a full and vibrant life.
“It breaks my heart to have to call them and tell them they were denied,” she said to me.
“I’m sorry. But it breaks my heart even more to use your funds on this request that would be better served for a child that needs it more,” I responded. I signed the denial and faxed the form with resolve.
Nevertheless, I have felt like a grinch ever since.
Tuesday, September 17, 2013
Time Bomb
Time slips by quietly until you are almost 18 years old. It seems like everyone counts down the days until that big milestone. And when it arrives, you instantly morph from child to (young) adult.
At least in the eyes of the law.
The day a child turns 18 can be bittersweet for pediatric physicians. Graduating a patient from the practice can be difficult to do if a close rapport has been established over many years, or it can be difficult for many other reasons.
Not long ago I treated a patient admitted to the pediatric intensive care unit for diabetic ketoacidosis, but was not familiar with him as he was followed elsewhere for his routine outpatient diabetes care. I looked at the long list of visits that filled his hospital chart and was appalled – in the 4 years since he had been diagnosed with Type 1 Diabetes he had been admitted a handful of times for DKA and had over 10 documented hypoglycemic seizures. There were notes about his ongoing refusal to partake in treatment with psychology or psychiatry despite his family’s pleas and how he would become combative and strong-arm his way out of the hospital. He could not legally sign himself out of the hospital, but his parents were always left with little choice but to sign the discharge papers against medical advice. His relationship with them was so strained over his poorly controlled diabetes that he often lived with friends for weeks on end instead of coming home.
I waited until he was alone in the hospital room to sit down and talk with him. I pointed out the number of admissions he had in 2013 alone, and he corrected me. “It’s actually way more than that, they just haven’t all been at this hospital. I’ve had over 20 hypoglycemic seizures and over 10 admissions for DKA. I feel like I’ve been in the hospital longer than I’ve been out.”
I asked him if he had thoughts of suicide, because his erratic insulin administration (skipping shots and then ultimately overdosing) could very well kill him. He denied suicidality, but his actions spoke louder.
“I just don’t care,” he said as he looked at me. His face was as indifferent as his words.
Looking back down at his chart, I realized he was only a few weeks away from turning 18. This was significant, because in a few short weeks he would have the legal power to refuse all treatment for himself at his will. If he kept going down his current path, he would surely meet a premature death. Our endocrine team discussed the situation with his own endocrinologist and the ICU team. We all agreed that something drastic had to be done while we still had any power over him -- while he was still a minor.
His parents were approached with the idea to admit him to a medical-psychiatric unit and carry through with it even if he fought and argued and refused. They worried about his potential reaction, but knew that his health was dangerously at stake. His parents, desperate for any intervention that would help their son, agreed.
When the patient heard about the plan involving inpatient med-psych treatment, he said no.
When we did not accept that answer, he ripped his IV lines out and headed for the door.
When security blocked him, he tried to fight them off.
When he continued to fight, we had to give him a sedative and transfer him to a unit that rested behind a double set of locking doors.
It felt like a harsh way to handle a person who is almost an adult. But he wasn’t an adult – not yet. After that day, the time leading up to his 18th birthday may have ticked by very slowly for him. But it is our job to ensure that his time keeps ticking at all.
At least in the eyes of the law.
The day a child turns 18 can be bittersweet for pediatric physicians. Graduating a patient from the practice can be difficult to do if a close rapport has been established over many years, or it can be difficult for many other reasons.
Not long ago I treated a patient admitted to the pediatric intensive care unit for diabetic ketoacidosis, but was not familiar with him as he was followed elsewhere for his routine outpatient diabetes care. I looked at the long list of visits that filled his hospital chart and was appalled – in the 4 years since he had been diagnosed with Type 1 Diabetes he had been admitted a handful of times for DKA and had over 10 documented hypoglycemic seizures. There were notes about his ongoing refusal to partake in treatment with psychology or psychiatry despite his family’s pleas and how he would become combative and strong-arm his way out of the hospital. He could not legally sign himself out of the hospital, but his parents were always left with little choice but to sign the discharge papers against medical advice. His relationship with them was so strained over his poorly controlled diabetes that he often lived with friends for weeks on end instead of coming home.
I waited until he was alone in the hospital room to sit down and talk with him. I pointed out the number of admissions he had in 2013 alone, and he corrected me. “It’s actually way more than that, they just haven’t all been at this hospital. I’ve had over 20 hypoglycemic seizures and over 10 admissions for DKA. I feel like I’ve been in the hospital longer than I’ve been out.”
I asked him if he had thoughts of suicide, because his erratic insulin administration (skipping shots and then ultimately overdosing) could very well kill him. He denied suicidality, but his actions spoke louder.
“I just don’t care,” he said as he looked at me. His face was as indifferent as his words.
Looking back down at his chart, I realized he was only a few weeks away from turning 18. This was significant, because in a few short weeks he would have the legal power to refuse all treatment for himself at his will. If he kept going down his current path, he would surely meet a premature death. Our endocrine team discussed the situation with his own endocrinologist and the ICU team. We all agreed that something drastic had to be done while we still had any power over him -- while he was still a minor.
His parents were approached with the idea to admit him to a medical-psychiatric unit and carry through with it even if he fought and argued and refused. They worried about his potential reaction, but knew that his health was dangerously at stake. His parents, desperate for any intervention that would help their son, agreed.
When the patient heard about the plan involving inpatient med-psych treatment, he said no.
When we did not accept that answer, he ripped his IV lines out and headed for the door.
When security blocked him, he tried to fight them off.
When he continued to fight, we had to give him a sedative and transfer him to a unit that rested behind a double set of locking doors.
It felt like a harsh way to handle a person who is almost an adult. But he wasn’t an adult – not yet. After that day, the time leading up to his 18th birthday may have ticked by very slowly for him. But it is our job to ensure that his time keeps ticking at all.
Wednesday, September 11, 2013
Attachment
Every once in a while, the tables turn and your own life experiences stare back at you. It is an odd feeling, to view things from the other side.
I have been going to the ophthalmologist each week, like a good patient, to patiently sit while he burns my retina. The lasering itself is only slightly uncomfortable (probably more anxiety-driven discomfort than anything else) and is relatively short. Every week my mother calls me on my way to the appointment to wish me well and express her distress over her being so far away from me. Her calls are like a warm hug and ease my pre-appointment jitters. And she is always the first person I call after I’m out, though the conversation is always the same. She expresses her pride that I am doing what I need to do to stay healthy, and then offers to fly up to be with me for the next appointment. It is sweet, but silly.
She did finally fly up to visit with my father, though not because of my eyes. We had long planned a visit over Labor Day weekend with a short stop-over in New York to attend the U.S. Open tennis tournament. It was a wonderful weekend, and I didn’t think about my eyes and the damaged retinas inside of them as they followed those tennis balls back and forth across the tennis court. Things were good.
But over breakfast the next morning I could tell something was wrong - though not with me. My mother looked like she hadn’t slept at all. She told me that throughout the previous day she had seen “floaters” in her right eye and before bed she saw a series of “lightning-like” flashes in her right eye. We only briefly covered common eye problems in medical school, but I remembered enough to be concerned that she was possibly experiencing a retinal detachment.
I quickly called my ophthalmologist and explained, but the doctors were in the operating room that day. The nurse recommended an optometrist that the office trusts, and thanks to some amazing luck he was able and willing to squeeze my mother into his schedule for an urgent dilated eye exam.
As we drove to the appointment, I felt my mother’s stress build the same way mine does before my eye appointments. I held her hand as we walked toward a scenario I thought was only ever going to pertain to me.
I took a seat near my mother’s exam chair and, in an effort to lighten things up, chatted up the optometrist. I joked about how I had been spending so much time with eye doctors lately given my recent diabetic retinopathy. His own eyes widened, and he shared that he has had Type 1 Diabetes for 20 years as well, and that he too is on a pump. Even though it had no bearing on his examination skills, our common bond somehow put me at ease. And he was wonderful with my extremely nervous mother, speaking softly and answering her questions clearly.
Her retina had not detached, but her posterior vitreous had. He explained to her that the gel in the eye shrinks with age, and the vast majority of older people experience this. The shrinking gel causes some pull on the retina, causing the flashes and floaters. She is at risk of retinal detachment as it shrinks further, but the risk is small and it will be caught early if it does happen. It just needs to be watched.
As we walked out of the office, again hand in hand, I better understood why she always wishes she was there with me during my own appointments. Health scares are scary for the whole family, not just the patient.
The tables may have turned on us that day, but I am so grateful I was able to sit right next to her.
I have been going to the ophthalmologist each week, like a good patient, to patiently sit while he burns my retina. The lasering itself is only slightly uncomfortable (probably more anxiety-driven discomfort than anything else) and is relatively short. Every week my mother calls me on my way to the appointment to wish me well and express her distress over her being so far away from me. Her calls are like a warm hug and ease my pre-appointment jitters. And she is always the first person I call after I’m out, though the conversation is always the same. She expresses her pride that I am doing what I need to do to stay healthy, and then offers to fly up to be with me for the next appointment. It is sweet, but silly.
She did finally fly up to visit with my father, though not because of my eyes. We had long planned a visit over Labor Day weekend with a short stop-over in New York to attend the U.S. Open tennis tournament. It was a wonderful weekend, and I didn’t think about my eyes and the damaged retinas inside of them as they followed those tennis balls back and forth across the tennis court. Things were good.
But over breakfast the next morning I could tell something was wrong - though not with me. My mother looked like she hadn’t slept at all. She told me that throughout the previous day she had seen “floaters” in her right eye and before bed she saw a series of “lightning-like” flashes in her right eye. We only briefly covered common eye problems in medical school, but I remembered enough to be concerned that she was possibly experiencing a retinal detachment.
I quickly called my ophthalmologist and explained, but the doctors were in the operating room that day. The nurse recommended an optometrist that the office trusts, and thanks to some amazing luck he was able and willing to squeeze my mother into his schedule for an urgent dilated eye exam.
As we drove to the appointment, I felt my mother’s stress build the same way mine does before my eye appointments. I held her hand as we walked toward a scenario I thought was only ever going to pertain to me.
I took a seat near my mother’s exam chair and, in an effort to lighten things up, chatted up the optometrist. I joked about how I had been spending so much time with eye doctors lately given my recent diabetic retinopathy. His own eyes widened, and he shared that he has had Type 1 Diabetes for 20 years as well, and that he too is on a pump. Even though it had no bearing on his examination skills, our common bond somehow put me at ease. And he was wonderful with my extremely nervous mother, speaking softly and answering her questions clearly.
Her retina had not detached, but her posterior vitreous had. He explained to her that the gel in the eye shrinks with age, and the vast majority of older people experience this. The shrinking gel causes some pull on the retina, causing the flashes and floaters. She is at risk of retinal detachment as it shrinks further, but the risk is small and it will be caught early if it does happen. It just needs to be watched.
As we walked out of the office, again hand in hand, I better understood why she always wishes she was there with me during my own appointments. Health scares are scary for the whole family, not just the patient.
The tables may have turned on us that day, but I am so grateful I was able to sit right next to her.
Wednesday, August 28, 2013
Grave Mistake
An endocrine emergency takes place right next to an endocrinologist, but she cannot do anything about it. Why?
Endocrinologists have all resuscitated patients and dealt with common medical emergencies, as they must train in either internal medicine or pediatrics prior to sub-specializing. But when you spend all of your time in a subspecialty, you don’t routinely practice the other skills. Endocrine emergencies are limited to adrenal crises and episodes of DKA, not heart attacks and strokes.
I thought about this a few months ago as I was walking to the ENDO conference. Attendees were given bright purple tote bags, and the streets were flooded with purple. I laughed to myself thinking that despite thousands of doctors milling about, how useful would we really be in an emergency that wasn’t involving hormones?
I met a lot of different people over the four days that I was there. One was a physician from Europe hoping to train to be an endocrinologist and he hung out with me and a group of friends the whole time. He noticed my insulin pump over dinner one night and we had a long discussion about it, as they are not commonly used where lives.
He and a co-worker of mine went sight-seeing around San Francisco the next day, which involved a heavy amount of walking. A few hours into it, they were at a street corner waiting to cross and he suddenly went pale and started speaking incoherently. My friend who was with him, and who is an adult endocrinologist, feared that he was having a stroke or maybe displaying signs of encephalitis. She sat him down and called 911 because he was completely unstable and deteriorating rapidly.
EMS showed up and immediately tested his blood sugar. It was 31 mg/dl. It turns out he had Type 1 Diabetes. He had not told any of us about it, even after I had spoken very openly about my own diabetes the evening before. He was not wearing medical alert jewelry, but he did have a messenger bag full of glucose tabs. The only problem was that he went hypoglycemic so quickly that he was unable to verbalize that they were in there and she did not know to look.
How ironic that one of the few emergencies that endocrinologists are really good at dealing with happened right in front of one and she was still unable to help. People cannot help in an emergency unless they are equipped with the right information. Despite being a doctor in the company of doctors, he felt so self-conscious about his diabetes that he was uncomfortable sharing it.
He learned his lesson the hard way. Luckily for him, he got glucose in time and then started to think more clearly about being open about his health.
Endocrinologists have all resuscitated patients and dealt with common medical emergencies, as they must train in either internal medicine or pediatrics prior to sub-specializing. But when you spend all of your time in a subspecialty, you don’t routinely practice the other skills. Endocrine emergencies are limited to adrenal crises and episodes of DKA, not heart attacks and strokes.
I thought about this a few months ago as I was walking to the ENDO conference. Attendees were given bright purple tote bags, and the streets were flooded with purple. I laughed to myself thinking that despite thousands of doctors milling about, how useful would we really be in an emergency that wasn’t involving hormones?
I met a lot of different people over the four days that I was there. One was a physician from Europe hoping to train to be an endocrinologist and he hung out with me and a group of friends the whole time. He noticed my insulin pump over dinner one night and we had a long discussion about it, as they are not commonly used where lives.
He and a co-worker of mine went sight-seeing around San Francisco the next day, which involved a heavy amount of walking. A few hours into it, they were at a street corner waiting to cross and he suddenly went pale and started speaking incoherently. My friend who was with him, and who is an adult endocrinologist, feared that he was having a stroke or maybe displaying signs of encephalitis. She sat him down and called 911 because he was completely unstable and deteriorating rapidly.
EMS showed up and immediately tested his blood sugar. It was 31 mg/dl. It turns out he had Type 1 Diabetes. He had not told any of us about it, even after I had spoken very openly about my own diabetes the evening before. He was not wearing medical alert jewelry, but he did have a messenger bag full of glucose tabs. The only problem was that he went hypoglycemic so quickly that he was unable to verbalize that they were in there and she did not know to look.
How ironic that one of the few emergencies that endocrinologists are really good at dealing with happened right in front of one and she was still unable to help. People cannot help in an emergency unless they are equipped with the right information. Despite being a doctor in the company of doctors, he felt so self-conscious about his diabetes that he was uncomfortable sharing it.
He learned his lesson the hard way. Luckily for him, he got glucose in time and then started to think more clearly about being open about his health.
Monday, August 19, 2013
Breaking Point
There is no use crying over spilled milk. Or spilled Lantus. But that doesn't stop anyone.
Every once in a while, a frantic call comes in via the emergency pager about this very thing. More often than not, the call comes in the night the patient was first discharged from the hospital. The night we nudged the entire family from the nest, with the parents feeling like the flailing baby birds.
They are so very green - only 3-4 hours into unsupervised life with diabetes. Lantus is the last hurdle of the day, but it's a high one. Do you remember the first time you held a vial and syringe? The first time you tried to hold both with one hand while pulling back the plunger with another? It seems so fluid now - having done it a countless number of times - but it wasn't always so mindless.
Sure, they spend lots of time practicing while in the hospital. But nurse and doctor supervision is a warm, comforting blanket that got left behind. Doubt and fear quickly creep in, chilling parents to the bone, and they panic. They tremble. They drop things.
The insulin spills everywhere, permeating everything. But so does the fear, sadness, frustration, and anger that has been building and building and building since the first news of the diagnosis. Having not had diabetes long enough to build up a stash of supplies, they have no recourse but to contact the on-call doctor.
Those emotions come spilling through the phone line, too powerful to stop. I've heard parents at their most panicked, rambling incoherently over my attempts to soothe. I've heard husbands and wives carry out screaming matches that I am forced to awkwardly sit through, unable to mediate because no one is able to hear me. I've had parents take out their frustration on me, yelling that I should have prescribed two bottles instead of one.
I can easily call in a prescription to remedy the insulin shortage. But when that first bottle hits the ground and shatters into a million tiny pieces, it always manages to crack their spirit, too.
And there is no prescription I can write to remedy that.
Every once in a while, a frantic call comes in via the emergency pager about this very thing. More often than not, the call comes in the night the patient was first discharged from the hospital. The night we nudged the entire family from the nest, with the parents feeling like the flailing baby birds.
They are so very green - only 3-4 hours into unsupervised life with diabetes. Lantus is the last hurdle of the day, but it's a high one. Do you remember the first time you held a vial and syringe? The first time you tried to hold both with one hand while pulling back the plunger with another? It seems so fluid now - having done it a countless number of times - but it wasn't always so mindless.
Sure, they spend lots of time practicing while in the hospital. But nurse and doctor supervision is a warm, comforting blanket that got left behind. Doubt and fear quickly creep in, chilling parents to the bone, and they panic. They tremble. They drop things.
The insulin spills everywhere, permeating everything. But so does the fear, sadness, frustration, and anger that has been building and building and building since the first news of the diagnosis. Having not had diabetes long enough to build up a stash of supplies, they have no recourse but to contact the on-call doctor.
Those emotions come spilling through the phone line, too powerful to stop. I've heard parents at their most panicked, rambling incoherently over my attempts to soothe. I've heard husbands and wives carry out screaming matches that I am forced to awkwardly sit through, unable to mediate because no one is able to hear me. I've had parents take out their frustration on me, yelling that I should have prescribed two bottles instead of one.
I can easily call in a prescription to remedy the insulin shortage. But when that first bottle hits the ground and shatters into a million tiny pieces, it always manages to crack their spirit, too.
And there is no prescription I can write to remedy that.
Friday, August 16, 2013
I'll Dye Another Day
I survived my first retina lasering session. I know, I know. I sound extreme. Why wouldn't I survive it? Well, I wasn't so much concerned about the laser as I was about the dye test they had to administer beforehand.
At the appointment during which I was told of my retinopathy, my doc explained that he would have to insert a needle into my hand to administer sodium fluorescein, a fluorescent dye that helps light up the blood vessels in my eyes to faciliate picture-taking so he could have a good road map for zapping those unwanted vessels on my retina.
As is standard protocol for consenting a patient for a procedure like this, he listed off the possible side effects of the dye. In residency, I consented patients for procedures and surgeries all the time. No big deal. Let's get on with it: Nausea (pfft, that's nothing), vomiting (meh), hives (itchy, but I can deal), and anaphyctic shock (hmmm, not so fun), and about 1 in 250,000 result in death (um, WHAT!?).
But I was so overwhelmed and emotional from hearing that my eye was trying to invade itself with wayward blood vessels that I just sort of thought I heard him wrong.
When I got home, I talked to my husband about it. I thought 1 in 250,000 sounded kind of high. He thought it did, too. But why would they do it so commonly if the risk was that high? I convinced myself that I misunderstood him. Wanting the truth, we both used our doctor-tools to look up doctor-papers and come to doctor-conclusions. I wasn't able to find that exact stat, but I did find papers that detailed a few patient deaths. I fixated on one that occurred because the patient had no access to life-saving epinephrine (to stop the anaphylactic shock). I felt better! Surely, the office had epinephrine.
But then doubt crept it, mostly because I work in hospitals and clinics. I know that supplies aren't guaranteed. Things expires. Things go missing. I wanted to call the office to ensure they had epinephrine, but I stopped myself because I didn't want to be "that patient". You know, the crazy one.
Fast forward a few days later, and the issue is still haunting me. So when the office called to confirm my appointment, I hesitated for a brief second and them meekly asked if I could ask a question. "Of COURSE we have epi, the staff assured me." Cue sigh of relief.
So I go the next day, petrified of the unknown but determined all at the same time. The tech who would administer the dye asked if the doctor had listed the possible side effects. With a smile, I said yes. Then (I don't know why I said this) I continued with, "But he said 1 in 250,000 resulted in death. I heard that wrong, didn't I?"
She looked at me and simply said, "Oh no, that is correct."
My heart rate rising a bit, I pushed it, "Oh, but only those without access to epi die, right? I mean, they go into anaphylactic shock and then die because they don't have epi, right?"
And she says, very matter of factly, "Well yes, they go into anaphylactic shock. But 1 in 250,000 die regardless of the use of epi."
I think I turned white. She took note and quickly tried to comfort me, "But don't worry! I've been doing this a long time and that has never happened! It will not happen to you!"
Cardinal rule #1 of medicine: Never speak in absolutes. Doctors tend to be superstitious folk. In residency, if someone told you "Oh don't worry, you'll have a quiet overnight shift!" it pretty much guaranteed you would have the worst, most disastrous night of patient care you have ever experienced and would ever experience in you entire career.
So her well-meaning words of comfort only served to send me into panic overdrive. I was going to die.
I was sent into the waiting room so my eyes could work on dilating. Waves of sadness and fear washed over me. Of all the ways to die, I wasn't really keen on it being that day, in that office. I thought about backing out of the test, but knew I was being unreasonable. Nevertheless, I wanted to tell my parents and husband I loved them...you know, just in case. These were the thoughts flitting around my scattered brain. If I called them, I would (probably) unnecessarily freak them out. So I sent heartfelt text messages. That made me feel better for a minute, and then I lost it all over again.
Trying to muster all of my powers to self-soothe, I figured a comparison might work best. There are far more common ways to die, I thought! Things I do every day, like driving! I happily googled, "chance of dying in a car accident." I am the most morbid person I know.
BUT, it completely worked. I found this great New York Times article and felt comforted by the fact that I have a 1 in 84 lifetime risk of dying in a car accident. I get in cars all the time regardless of this horrific fact! And I also learned that I have a 1 in 79,746 lifetime risk of dying by lightning. I spent over 20 years of my life in Florida, which is lightning central!
Smiling like a loon, I found comfort in my macabre fact search. They called me back, inserted the needle, pushed the flurescein, and I forced myself to take a deep breath.
I'm still breathing.
At the appointment during which I was told of my retinopathy, my doc explained that he would have to insert a needle into my hand to administer sodium fluorescein, a fluorescent dye that helps light up the blood vessels in my eyes to faciliate picture-taking so he could have a good road map for zapping those unwanted vessels on my retina.
As is standard protocol for consenting a patient for a procedure like this, he listed off the possible side effects of the dye. In residency, I consented patients for procedures and surgeries all the time. No big deal. Let's get on with it: Nausea (pfft, that's nothing), vomiting (meh), hives (itchy, but I can deal), and anaphyctic shock (hmmm, not so fun), and about 1 in 250,000 result in death (um, WHAT!?).
But I was so overwhelmed and emotional from hearing that my eye was trying to invade itself with wayward blood vessels that I just sort of thought I heard him wrong.
When I got home, I talked to my husband about it. I thought 1 in 250,000 sounded kind of high. He thought it did, too. But why would they do it so commonly if the risk was that high? I convinced myself that I misunderstood him. Wanting the truth, we both used our doctor-tools to look up doctor-papers and come to doctor-conclusions. I wasn't able to find that exact stat, but I did find papers that detailed a few patient deaths. I fixated on one that occurred because the patient had no access to life-saving epinephrine (to stop the anaphylactic shock). I felt better! Surely, the office had epinephrine.
But then doubt crept it, mostly because I work in hospitals and clinics. I know that supplies aren't guaranteed. Things expires. Things go missing. I wanted to call the office to ensure they had epinephrine, but I stopped myself because I didn't want to be "that patient". You know, the crazy one.
Fast forward a few days later, and the issue is still haunting me. So when the office called to confirm my appointment, I hesitated for a brief second and them meekly asked if I could ask a question. "Of COURSE we have epi, the staff assured me." Cue sigh of relief.
So I go the next day, petrified of the unknown but determined all at the same time. The tech who would administer the dye asked if the doctor had listed the possible side effects. With a smile, I said yes. Then (I don't know why I said this) I continued with, "But he said 1 in 250,000 resulted in death. I heard that wrong, didn't I?"
She looked at me and simply said, "Oh no, that is correct."
My heart rate rising a bit, I pushed it, "Oh, but only those without access to epi die, right? I mean, they go into anaphylactic shock and then die because they don't have epi, right?"
And she says, very matter of factly, "Well yes, they go into anaphylactic shock. But 1 in 250,000 die regardless of the use of epi."
I think I turned white. She took note and quickly tried to comfort me, "But don't worry! I've been doing this a long time and that has never happened! It will not happen to you!"
Cardinal rule #1 of medicine: Never speak in absolutes. Doctors tend to be superstitious folk. In residency, if someone told you "Oh don't worry, you'll have a quiet overnight shift!" it pretty much guaranteed you would have the worst, most disastrous night of patient care you have ever experienced and would ever experience in you entire career.
So her well-meaning words of comfort only served to send me into panic overdrive. I was going to die.
I was sent into the waiting room so my eyes could work on dilating. Waves of sadness and fear washed over me. Of all the ways to die, I wasn't really keen on it being that day, in that office. I thought about backing out of the test, but knew I was being unreasonable. Nevertheless, I wanted to tell my parents and husband I loved them...you know, just in case. These were the thoughts flitting around my scattered brain. If I called them, I would (probably) unnecessarily freak them out. So I sent heartfelt text messages. That made me feel better for a minute, and then I lost it all over again.
Trying to muster all of my powers to self-soothe, I figured a comparison might work best. There are far more common ways to die, I thought! Things I do every day, like driving! I happily googled, "chance of dying in a car accident." I am the most morbid person I know.
BUT, it completely worked. I found this great New York Times article and felt comforted by the fact that I have a 1 in 84 lifetime risk of dying in a car accident. I get in cars all the time regardless of this horrific fact! And I also learned that I have a 1 in 79,746 lifetime risk of dying by lightning. I spent over 20 years of my life in Florida, which is lightning central!
Smiling like a loon, I found comfort in my macabre fact search. They called me back, inserted the needle, pushed the flurescein, and I forced myself to take a deep breath.
I'm still breathing.
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