Monday, April 14, 2014

Professionally Insulted

There are only few moments in my life that I wish I could go back to in order to defend myself properly, or to shoot that perfect comeback, or to say what I was really thinking. I had one of those moments recently.

There is a teenage girl that I follow in clinic who has struggled greatly with the diagnosis of diabetes, among other things in her life. That slap-in-the-face feeling you get at diagnosis never quite left her. Her family is very supportive but her social situation is somewhat tumultuous given that she has many siblings, several of whom are struggling with their own medical issues. She always gives me the impression that she is flailing and unable to grab onto any lifesaver thrown her way.

I try especially hard to forge a connection with her at each office visit, because I know first-hand that difficulty in adolescence can create a slippery slope to long-term poor diabetes control. I chip at her hard exterior until I make a small dent, but there is never enough time in a visit to chisel all the way through. She sees counselors regularly, but I feel that we are losing her.

One day not long after one of her diabetes appointments, she and her mother argued over one of the many small details of diabetes and it quickly blew up into a screaming match. My patient ran away from home, though it seems more likely that she was just trying to run away from diabetes. The police soon found her, and they also found the marks on her arms where she had been regularly cutting herself. She was admitted to an inpatient psychiatric unit, at which point I was contacted by her mother. Her mother wanted me to discuss her diabetes care with the on-call psychiatrist because he was limiting what types of foods she could eat and had drastically changed her doses. 

I reached the psychiatrist, expecting to discuss technicalities of glucose measurements and insulin units, but the conversation went in a direction I was not expecting at all.

"Oh yes, Dr. Bialo. I've heard of you because the patient has mentioned you a lot. She likes you because you also have diabetes," he said.
"Oh, that is good to hear, " I responded.
"I also have diabetes," said the psychiatrist, "but I would never tell her that. She needs to understand that there are people out there that care about her well-being alone and not just because they have something in common," he said. 

His words took my breath away. Within seconds my emotions spanned shock, offense and anger. I realize that counselors, psychologists and psychiatrists have to meter what they share with patients because a deeper connection can actually harm treatment in certain situations. But that does not apply to my profression, at least not in the same way, and I took his explanation as mean and unnecessary. 

I ignored his comment and moved the conversation toward her medical treatment, but have regretted it since. In an effort to keep things professional despite his unprofessional comment, I feel I let both myself, my patients, and his future patients down.

Tuesday, December 24, 2013

Elf on the (Hospital) Shelf

My social media updates are full of pictures of elves on shelves - those playful little elf dolls that carefully watch children during the day and fly to Santa at night to inform him of their good and bad deeds. The elves, upon returning to the childrens' homes, often get into a little mischief.

I do not have children of my own, but I very much enjoy the endless stream of elf scenes on my computer and how creative those elves can be. When kids wake up in the morning, they find their elves taking marshmallow bubble baths or riding My Little Ponies.

The parents of my patients comment that the "Elf on the Shelf" is an amazing motivator for good behavior, including good diabetes care. Many of my patients eagerly check their blood sugar and take their insulin without a peep under the watchful eye of their elf. It seems like a win-win for all.

Holiday time should be full of innocent joy like this, but it can be a little more bitter than sweet at work. It feels as though we always get a handful on new-onset type 1 diagnoses too close to what should be a happy and festive time. No one wants to spend the days leading up to Christmas learning how to count carbohydrates instead of simply counting down the time until Santa arrives.

As if on cue, a little 7 year old girl came into the pediatric intensive care unit two days ago with very bad diabetic ketoacidosis from undiagnosed type 1 diabetes. She was so sick that she was not quite conscious the night she came in to the hospital. With the help of IV insulin and lots of fluid overnight, she was back to her usual self by the morning.

She awoke in the morning and stared up at the ICU ceiling where there was an unused hook for hanging IV bags. Her face lit up with excited recognition.

Magically, her elf had found her...even in the hospital!

Tuesday, November 19, 2013

The Secret Life of D's

I carry my diabetes with me throughout the work day, sometimes sharing it with patients and sometimes not. I pick and choose based upon whether or not I feel it will be beneficial.

As a physician still in the final leg of training to be an independent pediatric endocrinologist, everything I do has to be signed off by my superiors. I follow many patients that I consider "my own" and often pick up others that "belong" to my bosses.

Last week there was a particularly busy diabetes clinic, and I picked up a patient that I had not previously seen. I rushed from the patient before him and quickly scanned his medical chart for the pertinent information about his diabetes history. He was 6 years old, on Lantus and Humalog, and still honeymooning from his diagnosis only 6 months prior. It was noted in his chart that he has had a hard time coping with the diagnosis, which struck me as sad yet impressively mature for a child his age.

I swept into the room all smiles in an attempt to start the appointment on a positive note. I said hello to him, then to his mother and father sitting to either side of him. I introduced myself and my role, and assured them that their usual doctor would also be seeing them after me. His parents were polite but clearly exhausted, the stress of the previous 6 months weighing heavy on them. His mother was very attentive, his father just nodded without taking his eyes off of his cell phone. With my focus on the boy again, I asked him how he was doing. Not the diabetes, just him.

"But everything is diabetes," he said with sadness and an understanding that was beyond his years. "I don't really want to do it anymore." My heart ached at the sentiment, and I decided that this was an appropriate time to share my own.

"I understand that feeling. I wish you did not have to do it anymore, either. I feel that way sometimes, too, because I also have diabetes," I carefully explained.

His eyes widened in disbelief. He stayed quiet for a few moments and then shouted in disbelief "You have diabetes like me?!"

He studied me carefully, almost looking to see if there was something on me that he missed. Something that would have declared me as diabetic had he looked closer the first time.

He then pointed to his father and said, "My dad has diabetes, too! My mom is the only one here who doesn't!" His smile widened bigger than his amazed eyes.

Now it was my turn to be surprised. I turned to his father and our eyes met as he looked up from his cell phone. I smiled at him and looked back down at the chart. It was listed there: father with longstanding Type 1 Diabetes, with diabetic retinopathy and nephropathy. I caught myself thinking that I would have never guessed he had Type 1 despite knowing firsthand that diabetes is an invisible disease.

"Guess we're all in the D-Club together, huh?" I said to the boy.

"Haha, yeah! It's like a secret club!" he said with a giggle.

More insightful words from a very insightful little boy.

Tuesday, November 12, 2013

Diabetes Awareness Month

I have never been more acutely aware of diabetes than this particular month. And all I want to do right now is ignore diabetes completely.

I know that designating November as Diabetes Awareness Month was not meant for making the patients themselves aware, but for the public. For the masses that don't know anything about Type 1 or Type 2 or any other type and for those that think diabetes is not as big a deal as breast cancer and heart disease. I appreciate that. I just can't bring myself to join the movement at this moment in time.

I got bad news at the ophthalmologist at the start of this month regarding my recently diagnosed retinopathy. It is news that will be more eloquently fleshed out in a future post, when I have the strength to chip this mountain of emotion down into words and sentences.

For now, I just want to bury it. All of it. The tears, the guilt, the frustration, the anger, the shame, the fear, the regret. The massive regret. I can't face it all head-on right now. I want to walk away from diabetes.

But diabetes is holding me hostage. As much as I want to ignore it for even a few hours, knowing that ignoring it is what gave me this complication in the first place forces me to pay closer attention. Test, bolus, repeat. I am shackled by the guilt of it and fear of doing even more damage. The ball and chain has always been attached, it's just never felt so heavy before.

Work has been busier than ever, but I have been slower to get out of bed. I drag myself there and put on a happy face. I encourage patients to keep doing their best. I diagnose kids with new-onset Type 1 and tell them that they can live a perfectly healthy, normal life free of complications. This is the truth. It isn't my truth, but I keep that to myself. And I constantly feel like a hypocrite behind my cheerful facade.

My very situation is why Diabetes Awareness Month needs to exist. We need to get the word out to fund the research that improves and eventually eradicates this illness so no one else has to feel what I feel right now. I am grateful that the diabetes community has been so involved in getting the word out and wish I was a more vocal participant, but my rally cries have been overcome by a different kind of cry.

Wednesday, October 30, 2013

Pump Surgery

I have been on-call this whole month and it has been chock-full of interesting patients, though the majority involved issues with every hormone besides insulin. Keeping my head above the proverbial water has been a struggle.

So, of course, life decided to throw me a few more challenges in the midst of the work-related ones. Nothing serious - just annoyances like flat tires and stolen credit cards. And tonight I had my own medical issue that stole my attention away from the many tasks on my to-do list.

It started with a simple need for a pump site change. Then I got that low battery warning. No big deal, except that the battery cap on my pump appeared to be cemented on. I pushed and pushed and pushed the quarter against that plastic slot like it was the only job I had and it did not give me a hint of a budge. I pushed so hard that the plastic started to deform, causing the quarter to slip and slide out of place with each push. I started to doubt my approach.

Lefty loosey, righty tighty, yes? YES! I was definitely lefty loosey-ing, but without the loosening. It figures my husband was working late on the one night I REALLY needed him, haha.

I broke down and called the pump technical support, and the nice lady on the other end of the line suggested I find a pair of needle-nose pliers to help pry that battery cap off. She was willing to wait for me to find some, but I knew that was a lost cause. I went for a different kind of tool.

Rummaging through my husband's desk, I found a pair of surgical forceps -- medical pliers! They are normally used for grabbing on to surgical suture or vessels or skin, but I used them to operate on that battery cap and operate they did! It was off in less than 5 seconds.

We may not have the most traditional toolbox in our house, but it gets the job done!

Saturday, October 5, 2013

Washed Away

A childhood in Florida is amphibious. The summer heat is suffocating, and the only way you feel you can breathe is to keep yourself submerged in the cool water of pools, lakes, and oceans.

All of my fondest childhood memories involve the water. I would jump and doggy paddle and dive and dunk to my heart’s content. Hours later my parents would shout for me to come inside the house, but I would quickly duck under the water and pretend I never heard it.

Only diabetes had a real way of pulling me out. But not for long. Keeping juice near the edge of the pool or next to the beach chair would have me back in action minutes after a swimming-induced low. As a child, I felt invincible in the water.

But it wasn’t until just prior to my wedding that my now-husband convinced me to try SCUBA diving. He is a diving enthusiast, but I had never given it much thought before our relationship because no one close to me was a SCUBA diver. I finished my certification a few weeks before our wedding, and after the ceremony we jetted off to beautiful blue waters to try out my new skills. It was love at first dive.

I am extra vigilant of my diabetes before I dive. I check my blood sugar just prior to jumping in to be sure I am running between 200-220 mg/dl before the 45 minute swim. Sometimes there are strong currents that force me to work harder than expected and it can zap my blood sugar. Rising to the surface for a glucose source during the dive is not an option for risk of getting the bends, so I pack my dive vest with one or two 30g carbohydrate gel packs that I can squeeze into my mouth in case I go low under water.

I am also sure to be extra vigilant once I’m out of the water, again checking my blood sugar and treating any residual high or low blood sugars.

But being under water allows me to feel free in a way that I never am when I am above it. My oxygen tank and BCD replace my pump and CGM. Any electronic beeping comes from dive computers and underwater cameras, not high and low alarms. The only thing stinging my skin may be an occasional brush with fire coral, not pricks of a lancet.

The shouts and demands of life above are replaced by the calm sound of the bubbles flowing from my mask. I float effortlessly over underwater landscapes and creatures, the weight of the life with diabetes washed from my shoulders.

Saturday, September 28, 2013

Until the Cure

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.