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Friday, September 12, 2014

The Epic Letter of Complaint

I'm not one to typically complain. I rarely send back meals or make a scene about the poor service I receive. I don't leave complaint cards or online reviews, even when sometimes I should. I don't like confrontation and I lack assertiveness. These are things I know about myself and am working on changing. And when I do decide to stand up for myself and make a phone call about poor service, I often get so distraught that the tears start flowing, completely undermining my efforts.

This year has been a true test of my patience and my tolerance for poor treatment. Between my endocrinology office and online mail pharmacy, I have spent countless hours on the phone or waiting to get the care and medicines that I need.

When the first incident happened, I was upset, but I let it go. It was the first time something had happened in the past 8 years so I didn't make a big deal. When the second incident happened, I was perturbed and frustrated. I knew what was happening and the way that I was being treated was wrong. I made a complaint, but I still didn't feel that my situation was being properly recognized and dealt with. I started thinking about switching doctors, but I still stayed. When the third incident happened, enough was enough. I was mad. Something had to be done.

I wrote this letter (email) back in June. I sent it yesterday. Why did I wait so long? Partially because I didn't want to burn any bridges until I was sure that I wouldn't be coming back, until I had secured a new doctor that I liked. Since this has now been accomplished, I was ready.

Why a letter? As I mentioned early, it's often hard for me to get everything I need to say out before the tears take over. I wanted to be taken seriously, I wanted to be sure that I said everything I wanted to say. And while emotion isn't bad, I didn't want it to get in the way so I articulated my experiences in writing.

What was I hoping to accomplish by sending the letter? Honestly, I just wanted the office to know what kind of errors were being made and the kind of treatment the office was providing so hopefully no one else would have to go through what I went through. Yes I wanted an apology and my feelings to be validated, but more importantly, I want to be sure that other patients are well cared for and don't slip through the cracks the way I did.

So I sent this letter. I know it's long, but hey, a lot of shit happened that I wanted to tell them about.

Dear Mr. X*,

I have been a type 1 diabetes patient in your office for the past 8 years.
I have been on an insulin pump this entire time. 

Several recent medical error events in your office have made me frustrated and worried about the care that I have been receiving.

Recently, while attempting to refill my Humalog prescription I was asked by my mail order pharmacy to call them and verify the prescription that they had received from Dr. Y. This prescription was for 27 vials of insulin, and the instructions were for me to inject 100u three times a day. I usually only require 9 vials for the 3 months.
1.       As I stated earlier, I have been on an insulin pump for the past 12 years, nowhere in my record should it be recorded that I inject insulin
2.       This amount of insulin would probably kill me
3.       I once again needed to call your office and have this corrected with my mail pharmacy so that my necessary prescription could be filled before I ran out of insulin.

When I called the endocrinology office to get the prescription corrected, I talked to a nurse who figured out where the mistake was. I told her that I needed the correct amount sent to the mail pharmacy and she assured me that she was doing this electronically as we spoke on the phone. The next day I still had not received any notification from the mail pharmacy saying that it was received, so once again I called back the office to inquire as to what happened. After checking, it was determined that the prescription was supposedly sent to a different pharmacy and not the mail pharmacy,  although I had asked multiple times over multiple communications for this insurance company mandated change.

Frustrated that this was again not what I had requested, I made sure the nurse sent it to the correct pharmacy. I then called the other pharmacy to let them know that the prescription was incorrectly called in, that I would not be picking it up, and they informed me that they never received a prescription for insulin!

This makes me question both the medical record software and whether your office ever called it in to begin with.

I was forced to once again call the endocrinology office to verify that everything was correct since I was starting to run out of insulin, and was able to get this confirmation.

It is unacceptable that this process took four phone calls to get the correct prescription to the correct pharmacy over multiple days.  As you know, insulin is essential to my health, with fatal consequences if I run out.

And this is not the first time that the lack of care from this office has occurred. Earlier this year, I drove over 40 miles taking off work, waited 90 minutes for an appointment only then to be told by another doctor at the practice (Dr. Y was not seeing patients during this time) that she had clinicals now and could not see me that day and that I would have to come back the next day. Although being compensated for the gas from your office was a confirmation of a problem, this did not instill in me any feeling that I was “appreciated” as a patient, rather that I was considered just another body to move around to the convenience of the doctor.

Additionally, during this past winter, it took 3 weeks and multiple phone calls to get a prescription refilled for my Dexcom sensors due to a misunderstanding in your office that I wanted a refill and not a prescription for a whole new system. During those 3 weeks, I was out of sensors, thus not able to use my Dexcom unit.

This event itself was totally unacceptable.  But coupled with the recent insulin debacle, it makes me question the safeguards (if any) present in your office.

As a patient, and healthcare consumer, this utter lack of respect  of my time, poor record keeping by your office,  and obvious lack of concern for my welling being shown by your staff is not only medically concerning but totally unacceptable.

I have a Master’s Degree in Public Health, and work in the Healthcare arena. I have a high level of health literacy, and unlike many, I am able to generally navigate the complicated and complex health care system. Many if not most of your patients do not have this ability. I hope that you institute changes to the offices policies and practices, so that no one else will have to go through the ludicrous process that I had to endure to get my life sustaining medication and diabetes sensors. This multiple event experience has been completely unacceptable.  

If you would like to discuss this further, I can be reached at XXX-XXX-XXXX

Thank you,

Reva 

*All identifying information has been removed from this letter

Five hours after the email was sent, I received a phone call from the administrative director who I sent this letter to. He apologized for my experiences and told me that he had shared my letter with their chief of clinical services who would be looking into it more and following up. He thanked me for detailing my complaint and asked me if there was anything that I wanted to add. He recognized that I had chosen to leave the practice, but hoped that I would consider them again in the future.

I don't know what will come of my letter and if any changes will actually be made, but I'm proud of myself for sending it. The office needs to know what happened so it can protect its patients. I may not be the most assertive person, but I'm glad that this time I wasn't silent. I'm glad that I spoke up for myself and made my complaints known. Hopefully my complaint can help bring positive changes to the practice and improve everyone's experiences, even if it's too late for me.



Tuesday, September 9, 2014

The Risk

I looked down at my watch. 3:23. Twenty-three minutes past the time of my appointment to see my new endocrinologist. I had arrived at the appointment almost a half hour early, not wanting to be late to the new office. But now I had been sitting in that waiting room for close to an hour and I was starting to get antsy and frustrated.

I checked the time again. 3:27. My impatience had started to turn to anger. Part of the reason I had switched endos was to avoid excessive waits like this. I got up and went to the desk. "Hi, I'm just wondering how much longer you think the wait might be." The woman made a phone call. "They're about to call you back any minute."

Sure enough I soon found myself seated in the exam room. The nurse took my blood pressure and my height and weight, but nothing else. I sat in the chair and waited. And waited. And waited.

When I first arrived at the appointment, I was excited. I was eager for a new doctor, for one that would see me as a person and a patient. Who would listen and help me. Who would take more than a couple minutes to really understand me. I had high hopes for this appointment. But as I sat in that chair, that hope was diminishing minute by minute. 3:47. I started ranting angrily in my head.

"This is so annoying and typical! I leave work early, drive 35 minutes to wait an hour to see the doctor! Not only that, no one checked my glucose, or tested my A1c, or took my meter or pump or CGM to download my numbers. What the heck is the doctor going to talk about then?! How is she going to make any meaningful recommendations?! Why am I even wasting my time here?! Now I'm going to have to find another endo and do this all again!"

I stood up, too fueled with anger to sit any longer. I paced the room as the time approached 3:56. The doctor came in. "I'm sorry to keep you waiting." I shook her hand but didn't reply. She should be sorry. My earlier excitement had turned to bitterness. I sat down, my arms crossed, already defensive. This isn't how I wanted this visit to go.

But then the doctor started talking. 

She started asking all the right questions. She asked about my history, about my numbers, about my obstacles. She asked about my habits, my patterns, my journey. She asked me what I wanted to work on. She asked me what my goals were. And she listened. She took notes, she analyzed, she discussed. She took my CGM and downloaded the numbers, pinpointing right away areas that we could work on, some today and some over time. As she filled out my medical record, she read her notes out loud. They were so thorough and detailed. She made sure that we talked about everything I wanted to and made sure we had a plan to follow up. When we were all done, she looked at me and said, "Welcome to this practice, we'll take good care of you. Your goals are our goals and we'll work together to meet them."

It was everything I hoped the visit would be. She was everything I had hoped my doctor would be. It was night and day between this doctor and the one I've had the past 8 years. It even made that hour wait worth it. Besides the wait, I wasn't thrilled about the fact that I have to go to separate lab for my A1c test or that she couldn't download the information from my pump just my CGM. But regardless, I still consider the visit a great success. 

It wasn't easy to leave my other doctor and practice. It's hard to leave comfort and familiarity behind. But sometimes we don't know what better things await us if we never take the risk. 



Friday, August 29, 2014

Oh crepe!

When I was first diagnosed, I carried a little book around with me to look up the carbohydrates of everything I ate. Since I didn't always have access to the packaging of the food, I would look up every food and add up all the carbs in my meal. Now, that same information is available right on your smartphone. However, after adding up the carbs for thousands of meals over the years, I've memorized the majority of the foods I eat and have gotten pretty good at estimating.Yes, there are times when I over or underestimate, but I generally feel pretty confident in my abilities.

In fact, one could say that I've gotten a little too confident and maybe even lazy when it comes to carb counting these days. And this attitude is dangerous. Because when I am significantly wrong in my counts, the results can be pretty catastrophic. The continued importance of being accurate in my carb counting was made abundantly clear to me last week over a meal of crepes.

I was excited to try a new crepe restaurant for dinner with a coworker. Although I knew what a crepe is, I greatly over estimated the number of carbs for the thin pancake like wrap. While a typical crepe is about 10 carbs, I had figured it was at least double, thinking of it as more of a tortilla.


Everything was fine for awhile and I figured that I had successfully calculated the meal. I drove home and decided that I was going to go for a run, never mind that I was still really full from dinner. After my second mile, I started to feel off. I figured it was just from running on such a full stomach. I headed home and showered. It wasn't until after I finished my shower that I realized that the weird feeling was feeling more like a low blood sugar. I checked my blood sugar. 34!! Ohhh crepe!

I treated the low and eventually felt better, but the experience was definitely a reminder that even after all these years, it's still important to look up foods that I'm not as familiar with. It's easy to fall into old habits of guessing and being a little lazy, but I realize it's definitely worth the extra time to look something up in the beginning than to deal with a low blood sugar later. Next crepe, I'll be ready.



Tuesday, August 19, 2014

The time has come

Sometimes it's so much easier to give advice than to take your own. I know how important it is to be your own health advocate, to stand up for yourself when you aren't receiving the care and treatment you deserve. I know how important it is to ask questions, be involved, and make sure you are heard when you see your doctor. I know these things, I tell others these things, but it's time I practice what I preach.

I've been going to the same endo office for about 8 years. However, over the past couple years, I've had some truly horrible visits at that office with the staff, the doctors, and just the overall experience. Each time something went wrong, I would give some excuse on their behalf. "They aren't normally like this." "They seemed really sorry." "They promised it wouldn't happen again." My family and friends told me to find a new doctor. "But they know my history." "It's so close though." But enough is enough. It's time to demand the treatment, respect, and courtesy that I deserve as a patient and a person.

I'm leaving my endocrinologist.

I have to admit, I'm a little nervous about the switch. Even if my new endo has my old charts, she doesn't know my story, my struggles, my successes. She doesn't know me. When my new endo opens up my chart and sees my numbers, my history of my A1cs, my biometrics and glucose graphs, this is what I want her to know:

Those A1c's, they're not the best, I know that. I have room for improvement. But they're not awful either. And man did it take some work to get them to where they are! I try really hard, even if those numbers don't show that. I wear my CGM almost every day. I check my finger too throughout the day.  I try my best to carb count accurately and give insulin on time. Yes, I slip up. I'm off in my counts or I wait too long after eating to give insulin, but these are things that I'm constantly working on.

Doc, I care about my health. I get my blood work done, I see my eye doctor. I try to eat healthy. I exercise 5-6 days a week. I get enough sleep. But I'm scared by the statistics. I know about potential future complications. I know that when I'm ready, that I can become pregnant and have a healthy baby, but that it will take work and vigilance. I'm here because I care. I'm not non-compliant, I'm not uncontrolled.

I want you to understand me. I want you to work with me. I want you to help me.



I'm ready to close the door on one doctor and open it for another. I'm ready for a doctor and an office that cares. I'm ready for this change. I hope that the switch will be worth it.




Thursday, July 31, 2014

The Missed Meeting

It was 10:28.

I was late. I was never late.

Every day at 10:15 we have a "stand up" at work, a quick standing meeting, sometimes just 15 minutes long, that I haven't missed...until today.

10:28. How did I miss it? Oh yea, I remember.

Gigi had been acting up all morning, never really connecting and so not graphing my blood sugars. I had started the morning within my normal range, but at the higher end. But I was starting to feel pretty sick. With no help from Gigi, I tested my finger. 437! Shiiiiiiiiit.

I wasn't sure how that had happened.. I went to the bathroom and first changed my set. It was close to being empty and I didn't want to take any chances. Then I gave myself a shot. Since I don't normally use syringes at work, I wondered if my workplace had a sharps container.

I walked to our front desk to inquire. "Do we happen to have a sharps disposal here?"

My question was returned with perplexing looks. "Like for...sharp...things?"

"Yea like needles." Then I quickly added, "for insulin shots," not wanting there to be any misunderstanding.

"No we don't have one. But we can look into getting one."

"Oh, it's not a big deal, I can take it back home, I was just wondering."

I started to walk away when the office manager stopped me. "Hey, one more thing. We are working on our emergency preparedness plan for the office. We are going to get cases of water, would orange juice be something that you would want us to get too?"

For some reason this question caught me by surprise. For as long as I can remember, I've always had to be prepared. I look out for myself, never knowing when a low blood sugar might strike. I guess I wasn't expecting that my office would want to be prepared for me specifically as well. I thought back to a few months ago when we were all stuck in the basement for 3 hours during a tornado warning. I had a few packs of fruit snacks with me, but I did worry if I ran out. It would be reassuring knowing there would be an office emergency stash.

"Um actually yea, that would be great. Orange juice is perfect for low blood sugars. Thank you!"

"We'll be sure to pick up some and look into the sharps container."

I thanked her and walked away, glad that I work for a company that is so understanding and accommodating. I walked back to my desk, checked my blood sugar again, and looked at my clock.

10:28. Crap. I quickly emailed my coworker, apologizing for missing the meeting and explaining that I had some diabetes issues to take care of and lost track of time. It wasn't a lie, but at the same time I try never let my diabetes be my excuse and didn't like using it this time. I know my diabetes is disruptive. It wakes me in the middle of the night, it stops me in the middle of my workouts, it makes me rearrange my plans. But now it had gotten in the way of my work and made me miss a meeting. I was upset at myself for losing tack of time, even if I was taking care of my health, and hoped my coworker would understand.

Thankfully I had nothing to worry about. My coworker was more concerned with my health and wellbeing than with the fact that I missed the meeting. With my blood sugar on its way down, I hoped that the worst of the day was over.

I have to say how glad I am that I work in a place and with people that are so understanding of my health condition, I know that I'm lucky. And I know diabetes isn't the only health condition that can get in the way of people's productivity, everything from headaches and migraines to chronic pain, allergies, and stomach issues can be just as disruptive. But I hope that this was the last time that I'll use my diabetes as an excuse and the last meeting I'll miss because of it.


Thursday, July 10, 2014

The boot camp bond

The sun burned brightly in the sky as sweat dripped down my face, falling on the concrete below. My legs burned as I jumped from one side of the block to the other.

"10 more on this side! Keep going!"

The instructor urged us on. It was halfway through the boot camp class, and today we were outside using stepping blocks, jumping up and down, side to side. 

My body was shaking, I was getting light headed. "It's just the heat," I thought, "Your body is just getting tired. Don't give up now." I encouraged myself, trying to push through. But this feeling wasn't exhaustion, it was something different. 

As everyone continued with their workout, I pulled out my glucose meter and tested my finger. 52. Once I stopped, the low hit me full force. I rummaged through my bag looking for my fruit snacks. I couldn't find them, but remembered I have a whole box in my car. I walked silently behind the class towards my car, ignoring the questioning looks. I grabbed a couple packets and poured the contents in my mouth as I headed back to my mat.

The instructor had moved on to the next exercise. I stood there awkwardly, waiting for my blood sugar to come back up so I could join back with the class. I don't usually get self conscious while treating a low, but this time I did. I was sure everyone was wondering why I had suddenly stopped exercising, why I was standing there while everyone continued to jump around. When I tried to join back in, my body felt weak and dizzy. I couldn't do it, I knew I would just have to wait it out. The class is only an hour, and I knew I would be wasting 10-15 minutes waiting to feel better. And while I know this is necessary, I was mad. I was mad that I was missing part of a workout that I wanted to do, that I paid to do. I was mad at how disruptive my diabetes can be. I was mad that I was being forced to eat sugar that I just worked so hard to burn off. And I was mad that my diabetes had singled me out once again.

I sat there as the instructor walked over to ask if I was okay. 

"I have type 1 diabetes and my blood sugar went low. I'm fine but I just have to wait for it to come back up." My voice was full of emotion. I don't know why, but this particular low had made me feel vulnerable. I was afraid that the instructor wouldn't understand. I was fine, I just needed time, but I'm strong and capable. I didn't want her to underestimate me.

But the instructor looked at me and said something that made me confident that she understood.

"My son has type 1 diabetes."

I looked at her and smiled, instantly relieved. As a parent of a T1D, I knew she got it, and I knew I was in good hands.


Friday, June 27, 2014

Oh the Irony

I have this ritual. Almost every time that I go for a long grocery shopping trip, I treat myself to a cold bottle of diet A&W root beer on my way out. I don't drink a ton of pop and root beer has always been one of my favorites. Having performed this ritual enough times, I've come to recognize the diet bottle just from the color of it. I was finishing up a particularly epic grocery shopping trip and grabbed the A&W from the cooler as I got in line to pay, confident that it was the right one.

Parched from my long shopping excursion, I got into my car and immediately cracked open the pop and starting chugging, relishing the cool and refreshing taste. With half the bottle gone, I glanced down at the bottle. Something was off. I didn't see the "Diet" sign anywhere! Shit.

Two thoughts immediately crossed my mind. Well technically first I silently cursed myself. But then my first thought was "What a waste of calories!!" followed by, "Holy crap that's a lot of sugar!" A bottle of regular A&W root beer is a whopping 80 carbs! And here I had just drank close to half.

I took out my insulin pump and immediately started figuring out how much insulin to give. It looked like I drank half, but the top half of the bottle is skinnier than the bottom half, so maybe its not actually 40 carbs. I decided to subtract some to account for bottle shape and gave myself some insulin.

Within 5 minutes Gigi (my CGM) was already buzzing, displaying the two upward arrows showing that my blood sugar was rising quickly. I cursed again. Maybe I should give a little more insulin. I could just picture my blood sugar rocketing to the 300's. I was pissed. What a stupid, careless mistake. Really I was thinking that if I was going to have that many calories and sugar, I would have preferred ice cream or at least a root beer float!

I went about my afternoon and tried to put the incident behind me. That is until about an hour and a half later.

Something wasn't right. Gigi was being quiet, but all of the sudden I did not feel well. I got out my glucose meter and tested my finger. 37. Ummm what?! The low caught me off guard, as I was sure that I had given the appropriate amount of insulin according to the label. I needed sugar, and fast.

The bottle that only an hour earlier I was cursing, was now my salvation.

Ohhh the irony.