Health Scare - Why We Have To Be Better-Educated than Dr's

Twizzled D.
on 6/9/12 2:07 pm
 I’m sure I’m preaching to the choir on this, but I think it’ll kind of help me work through the emotions to put this out here. And if it helps someone, I’ll feel even better.

I got a panicked phone call from my brother this morning – four of them actually, but I slept through the first three. He had to call an ambulance this morning to take our mom to the ER. For background, my mother is 2.5 years post-RnY and has lost 150+ lbs. She had had Type 2 insulin-dependent diabetes that had been, up til 2 months ago, controlled through metformin only; this was great after years and years of injections with the pills. As I gradually got the story from my brother and later my father, for the past few mornings, my dad’s had trouble waking my mom. This morning, she was “glazed over" as my dad said, and he couldn’t get her to sip orange juice. Thankfully, my brother was still home and getting ready for work, and immediately called 911. The medics took my mother’s sugar, which was 36, which is dangerously low. They had to give her an injection of dextrose, which temporarily spiked her sugar enough to get her coherent, and another shot in the ambulance on the way to the hospital. In the ER, her sugar dropped again to 24 and it took the doctor and nurses quite a while to stabilize her. This was critical level. As the doctor told my father, had they been unable to raise it, she could’ve gone into cardiac arrest.

My mom is fine right now, spending the night in the hospital for observation, but the reason she’s there in the first place is why I’m sharing this. Once the ER doctor found out my mom was diabetic and post-RnY, he called an endocrinologist. My dad knows my mom’s whole medical history. It turns out about 2 months ago, her endocrinologist prescribed a new medication while taking her off the metformin. She told me the name of the med, which I believe is pronounced Buterin but I’m not 100% on it. It is an extended release injection to aid weight loss. How many red flags are there for you in that sentence? My dad got past telling me ‘extended release’ and I freaked out. Well, Mom had lab work done 2 weeks ago, and her A1C was double the normal level, so her PCP put her on Humalog (insulin) twice a day. The ER endo told my father that the Humalog was depressing her blood sugar levels because the amount prescribed was too much, and the extended release med from the old endo was keeping her from eating what she should have been eating. So she wasn’t eating enough to maintain normal blood sugar levels because she had no appetite, and the Humalog was depressing her ‘normal’ sugar levels – but they were just looking at the A1C’s.

My mom’s a smart lady, but her mistake was trusting two doctors who both know she had surgery but are poorly informed about her surgery. The PCP has been her doctor for nearly 50 years, and her former endo has a reputation as a pill-pusher. The ER endo (who she asked to be her new endo, and they did the paperwork to make it happen) has told her that the first order of business is to get her blood sugar stabilized, and next is to have her meet with the entire bariatric team to get a medical plan. My mom’s been compliant with her post-op bariatric plan except for the exercise component. She didn’t feel comfortable with the old endo after he took her off metformin, and had called her bariatric surgeon to tell her of the concerns. Turns out, my mom was smack dab in the middle of a referral process to get a new endo, but this scare expedited it. She trusted her instinct in asking for a new endo, but she trusted both the old one and the PCP and it could have honestly killed her today.

It’s a sobering thought. I know I have always made it a point to make sure that my doctors all have copies of every blood panel or test I get, and for someone with a fear of needles, I’m neurotically obsessive with getting my labs and making sure the levels are right where they should be. My mom’s been like that, too, but one little slip…one instance of trusting two doctors over her gut, was almost fatal. Please, please, please, remember that we know our bodies better than our doctors ever will. Even though they’ve gone to med school for decades to be good at what they do, it is still our job to be the best-educated on what goes into our bodies. I am so glad my mom is refusing to see her old endo and that her surgeon’s office is aware that he was (in my opinion) negligent in my mother’s care (OMG, extended release, I am STILL baffled by the fact that he’d think that was a good idea for someone whose stomach is the size of an egg). I’m even more glad that I still get to take her for her birthday lunch next week, and she’s here to celebrate her next birthday. 

-Kristi
             
Linda B.
on 6/9/12 2:23 pm - CO
VSG on 09/13/12
Wow, I'm glad she will be alright (I hope). You are so right, doctors don't know everything. It is a good idea to listen to your body, and your gut when it comes to your health. Enjoy taking her to that B-day lunch.
Hislady
on 6/9/12 2:53 pm - Vancouver, WA
Thank goodness your mom is OK now! I'm constantly amazed at how uninformed many docs are not just about WLS but many simple common sense things or things that as a layperson I shouldn't know more than they do. I seriously wonder what some of them are learning in med school. Don't get me wrong there are some amazinly good docs out there too but sometimes ya gotta dig pretty deep to find them!
Kevin H.
on 6/9/12 9:59 pm, edited 6/9/12 10:02 pm - Baltimore, MD
VSG on 02/06/12
 " it is still our job to be the best-educated on what goes into our bodies."

As a medic myself, it is unreal and unbelievable how many people have no clue.  I ask them their medical history .. they have no idea.  They might say, "I've got high blood" (instead of high blood pressure) or "i got sugar."  They don't even know its called diabetes, they call it "sugar" lol.

When I ask them what medications they are on .. half the time they don't even know or have any clue what its called or even what it is for.  This just boggles my mind.  

Humans are supposed to be the smartest creatures on the planet, but sometimes I wonder...

Best of luck to your mom.


 
  

olderbutwiser
on 6/9/12 10:18 pm, edited 6/9/12 10:20 pm
 AND your mom had RNY -- medical people pretty much have NEVER even heard of VSG so that means WE have to do all the explaining and watch what's being done.  They don't know what it is and think we mean RNY and are just misinformed............very frustrating.  Hope your mom gets everything she needs and is better soon.
VintageChick
on 6/9/12 11:48 pm
This is another reason why I want my loved ones to know my medical history and would never try to hide this type of major surgery from them.  Medical professionals need as much information as possible in an emergency where they have NO access to previous health history other than verbal, especially if a patient is so critical they can't give it themselves.  Glad your dad was watching out for your mom and got her help in time!!!
sunnymicki
on 6/10/12 1:04 am
Wow, so glad your mom is ok!  That was a really close call.  Was she taking her fasting blood sugars prior to this incident?  One thing that jumped out at me was your dad saying she had been hard to wake up the previous few days.  Hopefully she is cued into it now, but the first thing your parents should think of in those cases is to test her sugar.  And call the Dr right away.  With all of those medication changes, it is even more important.  

Insulin dependent diabetics also need to be so aware of what they are eating in relation to how much insulin they are giving themselves.  It sounds like the new endo is on top of things and will provide your mom with that type of education. I'm always shocked by how little some of my patients have been told about how to best manage their diabetes.  It is also surprising to me that your mom's PCP would change her diabetes meds, rather than refering her back to her endo...I think I would change PCP's too.

And fyi, the reason RNY patients are told not to take extended release *pills* is due to their stomach emptying speed and bypass of part of the small intestine.  An injection wouldn't have those same concerns because the stomach and intestinal track isn't involved.  Not that I'm saying the med your mom was on is a good one (I don't know anything about it), but an extended release injection isn't necessarily always a bad thing for a WLS patient.

5'9" All weight lost post-op. Goal weight determined by body composition testing.

Jackie
Multiplepetmom

on 6/10/12 1:50 am
 it's good info -you should cross post on the MB and/or the Rny forum

once upon a time I had a group to talk about Binge Eating Disorder, and later one about Clean Eating.

PM me if you are interested in either of these.

 size 8, life is great
 

ksommer08
on 6/10/12 9:05 am - OH
VSG on 06/25/12
I'm going to pop in and add my two cents as a pharmacist assistant. The first injection your mother was prescribed was Bydureon. It has been on the market for less than 2 months. Please, go to www.fda.gov/safety/medwatch/default.htm and file a report about what happened to your mother. This is not a punitive thing, but to provide information to the FDA and the manufacturer about potential problems using the medication in conjuction with insulin or in patients that have had bariatric surgery. This may help save someone elses life.
                
Twizzled D.
on 6/10/12 11:45 am
 Thank you all for your kind words. My mom had been checking her blood sugar throughout the day, and it had been lowish in the morning (70s) but came up by the time she had breakfast and lunch – still low, in the 90s. My brother has emergency responder training and lectured both of my parents about the times this happened earlier in the week and they didn’t seek medical attention. I’m just thankful he was home Saturday morning. I’m going to that FDA website to report this incident. The endo she saw was a notorious pill-pusher for my mother. Right now she’s on night 2 in the hospital. The new endo wanted to establish a baseline before he changes her meds, so he opted to keep her another night. Mom’s not totally thrilled but she understands. She just wants to go home tomorrow because tomorrow’s her birthday. I’ll definitely cross-post to the RnY board too.

Thanks for the info too on how an extended-release injection shouldn’t have affected her. I’m not totally up on that med she was on, I do know she had to inject it into her tummy-area and she had had lumps at every injection site. I’m more perturbed that her former endo thought it was a good idea to put a bariatric patient on a new medication that even suggested ‘extended release’. I’m just glad the new endo is having her come in for a consult with the whole team, and while I’d like to see her change PCP’s, it’s not going to happen. She’s been with him for almost 50 years and she’s not changing til he retires. My parents have also both decided to get medic alert bracelets, in case this were to happen on vacation or when they’re not with each other. It was a scare but it’s thankfully passing, and we’re all a little wiser for it. 

-Kristi
             
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