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Wednesday, February 6, 2013

She Tried.

When I was an ER nurse many moons ago, there were two girls who came in all. the. time.  "Frequent Fliers", as we would call them.  In addition to "diabetes" (plus a host of other miscellaneous diagnoses), they both had End Stage Renal Disease (ESRD), and their blood pressures were NEVER less than 200/100.  

They were both in their early 20's.  They were rude, impatient, demanding, and...well...MEAN. And, by "mean" I don't mean mean.  I mean name-calling, cussing, throwing-emesis-basins-at-you,  downright M E A N.

I swear if one wasn't there, the other one was.  The only thing worse than having the charge nurse assign one of them to your team, was being assigned both of them.

After a few years in that ER, I took a position in the PACU (aka "Recovery Room"), and must admit that part of me was happy knowing I wouldn't have to deal with them any longer.

Or so I thought.

Turns out dialysis shunts require revisions more often than I realized.  Shunts are revised in the OR under anesthesia...which means these patients need to be recovered from anesthesia...which means...


I could run, but I couldn't hide.

And you know what else?

Their surgeries were usually "add ons".  Meaning, more often than not, they were added on at the end of the day, after the scheduled procedures were finished.

I *ALWAYS* worked evening shifts.

So, unlike the ER, when there was a chance that they'd come in earlier or later than the time I was the PACU, I was pretty much guaranteed to see one or both of them ALL. OF. THE. TIME.

Dammit!  Why didn't they take care of themselves?  Huh?  Have a flippin' vegetable.  Stop skipping your insulin. Exercise a little. And lighten up on all that salt you must be adding to everything you put in your mouth, because your blood pressure is out of control.  Quit getting yourself into these quandaries, leaving you no choice but to come here...AGAIN.  Have a little self respect.  Do better for yourself.

And get out of my life.  

These are things that jumbled my mind as soon as I saw one (or both) of their names added to the schedule.

One day I was behind the curtain helping one of them with something.  I was frustrated.  I was tired...and I'm sure it showed.

Then I felt her hand brush against mine.

Not in a M E A N way.

More like a soft nudge.  A call for attention in the midst of her drowsy state of mind.

"My mom couldn't figure it out, and my dad wasn't ever around."

Really???  Do we have to talk right now?  I just want to get out of here before you decide to start throwing something at me.

"My diabetes.  She just couldn't figure it out and I tried as best as I could, but I was just a little kid.  She had lots of boyfriends and I have all these brothers and sisters and stuff, but I don't really know where everyone is.  Some of them are in jail.  Some of them went to foster homes. She couldn't really take care of herself, and it was hard trying to take care of me.  I went to a foster home a couple times, but no one ever kept me for long because it was hard to deal with the sugars.  When the other kids were gone, they gave me back to my mom. I dropped out of school when I was 16.  Just like she did when she got pregnant with me."

I felt a lump in my throat.

"I'm not going to live much longer.  The doctors told me that already.  I just wanted to tell someone that I tried, but when I was old enough to understand it better my kidneys were already failing. You medical people are the only people I ever see.  I don't really have anyone else to talk to."

She was right.  She didn't live much longer.  I think I might have seen her once or twice after that.

That conversation happened 11 or 12 years ago.

Fast forward a few years, and my daughter was diagnosed with Type 1 Diabetes.

I had no idea.

I was shocked when I figured out the amount of effort, time, and brainpower it was going to take to keep her alive.  Vegetables, reducing sodium, more exercise, self-respect...while they're all fine and dandy, THEY WON'T MAKE THE PROBLEM GO AWAY.

Over the years, I've thought about that patient of mine from long ago.

She taught me a lesson, and I had no idea just how close to home her lesson would hit.  What if her mom had a community of support?  What if SHE had a community of support?

What if a million things.

What would she have become?  What could she have become?

What has the world lost, because she didn't have a chance?

So...WORLD??  Are you there?

She tried.  She tried her best.

And, to my patient...

Maybe your family hardly remembers you.

But I do.

Thank you for sharing your heart with me.

I will take your message to the top.  I will tell them.  And I will do whatever I can to make sure another child doesn't succumb the same fate.

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  1. Sigh. I remember when Lauren was diagnosed (going on 16 years ago now!) Someone saying to me "Well, I"m glad she has the family she has and the mother she has" and thinking to that "Well that's just BULLSH**!"because I DID NOT WANT THIS. But now, looking at Lauren at the same age these frequent fliers were when they were in your life; considering her current state: happy, healthy, rocking college and her internship (helping with your "to the top!", in love with a great guy and just embracing life, I think: I'm glad I was picked to help her and not some poor parent who would be in way over their heads.

    I hope that does not sound arrogant -- it's not meant to me. simply that I was lucky enough to have some brains, a warm home, a stable marriage, some money in the bank (sometimes) and a big mouth I've never been afraid to use for my child.

    Those poor young women were hit by the bad luck stick that is diabetes with no one able to sooth the bruises that come along with it.

    Beautiful post.

  2. Aw, that made me cry.

    When we were at Phoenix Childrens when Kortnie was dx'd, after ICU and on the Diabetes floor, there was a boy, a young man I guess, I never saw a parent with him, he was out sitting at the nurse's station a lot, he knew everyone there by name, he was in the school house room, he was everywhere and seemed like he knew his way around, like he'd been there a lot.

    I asked one of our nurses, "how many times can we expect to be back here with our daughter?"

    She told me something like, "if you do the work and try your best to take care of her, you won't be back here often, you may have to go to the ER sometimes when she is sick and you need help, but you shouldn't leave here ever expecting that you'll be back"

    I said to her "yeah, but, I know you can't give me details, but what about that boy, he seems like he's been here a lot"

    She said to me that sometimes kids don't have people to take care of them the way they should and sometimes they get tired or burnt out or they want attention so when they get to their teen years those kinds of kids come in more often but that she didn't think my daughter would turn out like that.

    I think of that boy often and wonder what has happened to him over these few years. This post made me think of him again today. I hope he's okay.

  3. Oh my - that strikes a chord. My first ever ward placement as a student nurse was the renal ward. All those patients who had tried or not to cope with their diabetes. Getting agitated when they felt judged. 'You try living with this', I heard them shout at nobody in particular. Tired. scared, but hoping for a miracle. Some remain in my memory for ever. The single mum who had an allergic reaction to an anti emetic. The bride -to- be who prayed for a transplant. The transplant patient who walked out the door, without peritoneal dialysis, untethered. The hope I saw there was inspiring, the way the Teams worked to improve chances for all those patients. But it scared me. I had diabetes in the family. This couldn't happen to us. Could it?

  4. Such a beautiful post. I’ll never forget the first time our healthplan invited us to a group diabetes meeting after my daughter was diagnosed. There was another little girl there about my daughter’s age (10) with what I had assumed was her mother. We got to talking in the lobby, as at the time I’d really only met one other child with type 1. The woman started crying and told me that she was actually the little girl’s grandma, and that she was raising her granddaughter because the little girl’s mother (her daughter in law) had recently died from type 1 diabetes “complications”, in her early 30’s. I was floored. She proceeded to tell me that her daughter in law hadn’t ever taken good care of herself and that she’d come from a “messed up” family. That was kind of a moment for me. If I didn’t realize how much responsibility I had been given to raise my child to be healthy and happy, I certainly did at that moment. And it also made me so sad realizing how much WORK goes into not only keeping my child healthy, but teaching her not just the actions and theory, but the self-discipline she will need to continue to care for herself as an adult. It’s really kind of daunting when I think about it. And what happens when a child with absent, or disengaged, or “messed up” parents is diagnosed? What happens to a child like mine who doesn’t have the support system our kids do? That keeps me up at night.

  5. Wow, what a story and what a memory. The sad thing is, I'm sure that isn't only a story of 11 or 12 years ago. I'll bet it happens today to parents who either are unable to care for their kids or simply choose not to.

    The comforting part of the story is that she left an impression - although one that she'll never know. Hopefully she is the impetus for some sort of change; though I'm not quite sure what kind of change that would be. Wishing for all parents to be GOOD parents seems, to me, out of reach - unfortunately.

  6. Very beautiful post, Wendy. Thank you for passing her story along, keeping that memory alive, and reminding us what can happen when there's people who love and support you, and an entire community of people caring.

  7. I am so glad you listened to her.
    Thanks for telling us about her.

  8. That doesn't sound arrogant at all.....and Mrs Rose, I know you WILL take this with you all the way to the top! I spent a lot of time defending my Dad after Maddi and I were diagnosed, by then, it was too late too to guide him to newer technology...nph and too high blood sugars was all he knew. He did everything right, he didn't know any different....which is why he didn't seek answers, that was just how diabetes was in his mind. He tried his best too.

    Knowledge and education is where its at. Advocate, advocate, advocate!

  9. What a beautifully written but heartwrenching story. It is all too familiar for me, too. As I progress through my Pediatric Endocrinology training and new-onset Type 1's come along, I get a tightness in my chest that doesn't loosen until I meet the child's family and confirm that they are type that can "handle" diabetes. All too often, we are faced with people in social situations that just don't allow them to be successful in their diabetes care. There are SO MANY FACTORS that can interfere -- it's amazingly overwhelming. And it is heartbreaking to have to send kids home from the hospital with the feeling that they might ultimately not succeed, despite providing the family with every single resource available.
    Thank you for being a voice for that unfortunate patient. She is lucky to have been treated by you!

  10. I found this story very powerful -Kelly Kunik shared it on Facebook and that's how I came to your blog... My fiance is an ICU / ER nurse, and they too have frequent fliers (that's what they call them too). I am going to share this story with her tonight, and wanted to say thank you for sharing this.

  11. Wow, what a touching post. I was talking to my Dad about this the other day. He is a very fragile, type 1 with so many health problems. (None of which he could have done anything about) He said its so exhausting, even as an adult. He said we never know what people are going through at the moment. It's sad that the world is filled with people that we see everyday, that are fighting tremendous battles.

    I really feel for parents of diabetic children. The worry, and lots of times, the inability to control it, no matter what the circumstances.

    You are truly brave, and someone I really look up to! <3

  12. All i can say is hugs! Im an rn...mother of two type one and typenonw myself!!!

  13. Oh, wow. Thank you for that. This is so sad, and also so...I don't know. Just. What a reminder of what happens if we don't take good care. Thank you for this.

    Cute nurse photo too!

  14. I always get so sad when I hear stories like this. There is so much that we didn't understand back then, but also, so much that medical professionals didn't care to teach us. I remember when I was little, any time I got sick (any kind of sick), my mom would call the doctor and his rote answer was "Take her to the ER." My mom didn't want to take me to the ER. She wanted someone to tell her how to take care of me!
    I want people with diabetes (and their families) to understand that they CAN ask questions. They CAN learn. They CAN question doctors. They CAN.
    Doing the best we can is all we can do. And if she did her best, that's all she could do. It's so easy to be angry when you're sick all of the time. I pray she's at peace now.

  15. Wendy-

    I've read this about five times now. And each time, I've cried. This story is truly amazing. Thank you so much for sharing it with us.

    We all are so quick to judge other people. We have no idea what someone else has been through. What burdens they are carrying. Thank you so much for reminding us. Love you!

  16. Wendy -
    This story made me cry , and by "cry" I mean it made me sob out loud - And it made me think about so many things.
    It made me think about my sister and her diabetes struggles, her time on dialysis, and her death and what she said to me before she died. And what people said (and still say) to me about her passing - telling me that she didn't take care of herself - And I tell them she did the best she could with what she had in the Diabetes Dark Ages.
    It made me think about my life with diabetes and me diabetes fears and struggles - And it made me think of the people who I grew up with with who also had diabetes and are no longer here.

    Thank you so much for writing this - And thank you for remembering your patient and sharing her story with us.
    Now we all all will remember her - And we will remember that she did indeed try - And through your post we will make sure others remember her too.

  17. I left a msg on FB, but wanted to tell you here, too that this is still true and that is why I am thankful that you and your daughter are taking the time to help make some changes. Show everybody your daughters shining face and remind them that diabetes isn't always the overweight, old, them hear how blessed your daughter (and my son) are to have family that cares and will fight every night to keep our children safe, but not all are that lucky. I worry more about the children that depend on state help than those that don't, I won't forget that just a few years ago WA state had some legislators trying to make it so that kids with t1d that had state healthcare would only get 1 test strip a day...could you imagine the ramifications of that?!
    Anyhow, thank you.

  18. Oh, wow. Wendy. What a powerful story.

    It makes me (and my dad) grateful for my mom and a good care-team as I was growing up.

    Thank you for sharing.

  19. Thank you for the remarkable story. As a former ER nurse turned CDE in a type 1 program, I appreciate that you have given her story life. May its impact reach many!

  20. Wow.. When our daughter was diagnosed a little over a year ago I remember my husband saying, "What about the kids who have parents that aren't capable of doing this? Or the ones who just WON'T do it? What happens to them?" You just told us. So sad.

  21. Wow. I was dx'd at 19. By that time I was out of the house & although I'd moved back home several times since high school I never did after being dx'd. My parents are split & although they've always done what they thought was best for me I can't picture them taking care of my diabetes. I know they would try but like y'all have said "It's hard to wrap your head around."
    4/1 marked 2 years being dx'd & even though I've tried teaching my parents what to do when I'm low or high they still don't get it. I've had my moments were I was done with being diabetic. D.O.N.E but that's a miserable feeling after a while. Thankfully, I've been blessed by an amazing man that knows how to take care of me. & now on those days when I don't want to take care of myself I think of our future kids & grandkids & I know I have to be around long enough for all of them.


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While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.