You are a patient. You have rights. Speak up.

[SIcklyhatED]

I wanted to write a post about something that happened to me on my last hospital stay, and why I think young people with CF, especially those transitioning into the adult world, should be aware of.<br>Long story short, the Sr. resident assigned to me misdiagnosed me with CFRD. What happened was the glucose test was done incorrectly and multiple people screwed up and didn't catch the mistake. This resident was too hasty in her decision to diagnose, not even running it by her higher-ups. The end result was the worst 24 hours of my life. You want to take emotional distress? Yeah, that's one way to do it.<br>Within hours a diabetic education nurse was in my room, yammering away about insulin and carbs counting and all of this crap that I, at the age of 18, alone, and just starting to shoulder the nitty gritty things about having CF and being an adult, could not absorb.<br>Well, after much crying on my, my mother's and my pumonologist's part, and some digging done by my father, we discover that no, I am NOT diabetic, and that this Sr. resident not only has terrible bedside manner, but made a HUGE HIPAA violation in reveling my "diagnosis" without my permission in front of a friend and her mom who were visiting me at the time. Needlesstosay, she was in a crap load of trouble and will never forget my name.<br>What I wanted to say was that as patients, you have RIGHTS. Do NOT just take what the doctors give you and accept it. Fight for what you think is right for your body. I screamed that I had no symptoms and that this was a misdiagnosis... some to find out I was right. Ask questions, look at your own charts, seek additional opinions. Mistakes happen, but we can help prevent them too.<br>What disturbed me was what if this was a family who was not medically savy like my family is? What if it was a family that did not speak English well? Or a family that simplyacceptedtheir fate and went along with what the doctors said? They where <i>thisclose</i> to giving me insulin. That could have put me in a coma. Had we not fought it, something horrible could have happened.<br>So, speak up. Take charge of your medical proceedings, because there's more than one crappy resident out there that will forget the fact that a person is tied to a diagnosis.

 

[SIcklyhatED]

I wanted to write a post about something that happened to me on my last hospital stay, and why I think young people with CF, especially those transitioning into the adult world, should be aware of.<br>Long story short, the Sr. resident assigned to me misdiagnosed me with CFRD. What happened was the glucose test was done incorrectly and multiple people screwed up and didn't catch the mistake. This resident was too hasty in her decision to diagnose, not even running it by her higher-ups. The end result was the worst 24 hours of my life. You want to take emotional distress? Yeah, that's one way to do it.<br>Within hours a diabetic education nurse was in my room, yammering away about insulin and carbs counting and all of this crap that I, at the age of 18, alone, and just starting to shoulder the nitty gritty things about having CF and being an adult, could not absorb.<br>Well, after much crying on my, my mother's and my pumonologist's part, and some digging done by my father, we discover that no, I am NOT diabetic, and that this Sr. resident not only has terrible bedside manner, but made a HUGE HIPAA violation in reveling my "diagnosis" without my permission in front of a friend and her mom who were visiting me at the time. Needlesstosay, she was in a crap load of trouble and will never forget my name.<br>What I wanted to say was that as patients, you have RIGHTS. Do NOT just take what the doctors give you and accept it. Fight for what you think is right for your body. I screamed that I had no symptoms and that this was a misdiagnosis... some to find out I was right. Ask questions, look at your own charts, seek additional opinions. Mistakes happen, but we can help prevent them too.<br>What disturbed me was what if this was a family who was not medically savy like my family is? What if it was a family that did not speak English well? Or a family that simplyacceptedtheir fate and went along with what the doctors said? They where <i>thisclose</i> to giving me insulin. That could have put me in a coma. Had we not fought it, something horrible could have happened.<br>So, speak up. Take charge of your medical proceedings, because there's more than one crappy resident out there that will forget the fact that a person is tied to a diagnosis.

 

[SIcklyhatED]

I wanted to write a post about something that happened to me on my last hospital stay, and why I think young people with CF, especially those transitioning into the adult world, should be aware of.<br>Long story short, the Sr. resident assigned to me misdiagnosed me with CFRD. What happened was the glucose test was done incorrectly and multiple people screwed up and didn't catch the mistake. This resident was too hasty in her decision to diagnose, not even running it by her higher-ups. The end result was the worst 24 hours of my life. You want to take emotional distress? Yeah, that's one way to do it.<br>Within hours a diabetic education nurse was in my room, yammering away about insulin and carbs counting and all of this crap that I, at the age of 18, alone, and just starting to shoulder the nitty gritty things about having CF and being an adult, could not absorb.<br>Well, after much crying on my, my mother's and my pumonologist's part, and some digging done by my father, we discover that no, I am NOT diabetic, and that this Sr. resident not only has terrible bedside manner, but made a HUGE HIPAA violation in reveling my "diagnosis" without my permission in front of a friend and her mom who were visiting me at the time. Needlesstosay, she was in a crap load of trouble and will never forget my name.<br>What I wanted to say was that as patients, you have RIGHTS. Do NOT just take what the doctors give you and accept it. Fight for what you think is right for your body. I screamed that I had no symptoms and that this was a misdiagnosis... some to find out I was right. Ask questions, look at your own charts, seek additional opinions. Mistakes happen, but we can help prevent them too.<br>What disturbed me was what if this was a family who was not medically savy like my family is? What if it was a family that did not speak English well? Or a family that simplyacceptedtheir fate and went along with what the doctors said? They where <i>thisclose</i> to giving me insulin. That could have put me in a coma. Had we not fought it, something horrible could have happened.<br>So, speak up. Take charge of your medical proceedings, because there's more than one crappy resident out there that will forget the fact that a person is tied to a diagnosis.

 

[ymikhale]

I could not agree more. I am a black sheep at my hospitl, questionning everything in regards to my dd's. care. Shee is only 4 and I believe I averted at least 3 errors, not such huge ones as what happened to you but nonetheless. Thanks for posting this, it gives me sTrength to keep up being my dd's'advocate.

 

[ymikhale]

I could not agree more. I am a black sheep at my hospitl, questionning everything in regards to my dd's. care. Shee is only 4 and I believe I averted at least 3 errors, not such huge ones as what happened to you but nonetheless. Thanks for posting this, it gives me sTrength to keep up being my dd's'advocate.

 

[ymikhale]

I could not agree more. I am a black sheep at my hospitl, questionning everything in regards to my dd's. care. Shee is only 4 and I believe I averted at least 3 errors, not such huge ones as what happened to you but nonetheless. Thanks for posting this, it gives me sTrength to keep up being my dd's'advocate.

 

[lilmac1177]

i agree completely with your post! as we grow with CF, and continue to learn and understand ourselves, sometimes we actually end up knowing more than the doctors do about the disease and the way it may affect our own bodies (as each and every one of us w/ CF is different). so pay attention, take charge of your health and speak up when something doesn't feel right!

i experienced a similar situation during an admission over the summer during which i was having particular trouble keeping my oxygen saturation up. i also have an acute issue with anxiety and one evening in the hospital, i asked for some Ativan. i told the doctor (i'm not sure if a resident or intern or what ... i need to pay better attention to that myself!) i am usually prescribed only 0.25 mg due to my weight of only 98lbs. sooo, the nurse came in, administered the Ativan via IV and next thing i knew i woke up in another unit of the hospital, considered a step down from ICU, on bi-pap which i'd NEVER had to utilize before. i was alone (my family lives a couple hours from my hospital), i was scared (even at 34 years old!) and it was a mess! the whole milligram of Ativan the doctor wrote for me not only knocked my butt out, but it also caused my O2 sats to drop even more!

so, bottom line...PAY ATTENTION AND SPEAK UP!

 

[lilmac1177]

i agree completely with your post! as we grow with CF, and continue to learn and understand ourselves, sometimes we actually end up knowing more than the doctors do about the disease and the way it may affect our own bodies (as each and every one of us w/ CF is different). so pay attention, take charge of your health and speak up when something doesn't feel right!

i experienced a similar situation during an admission over the summer during which i was having particular trouble keeping my oxygen saturation up. i also have an acute issue with anxiety and one evening in the hospital, i asked for some Ativan. i told the doctor (i'm not sure if a resident or intern or what ... i need to pay better attention to that myself!) i am usually prescribed only 0.25 mg due to my weight of only 98lbs. sooo, the nurse came in, administered the Ativan via IV and next thing i knew i woke up in another unit of the hospital, considered a step down from ICU, on bi-pap which i'd NEVER had to utilize before. i was alone (my family lives a couple hours from my hospital), i was scared (even at 34 years old!) and it was a mess! the whole milligram of Ativan the doctor wrote for me not only knocked my butt out, but it also caused my O2 sats to drop even more!

so, bottom line...PAY ATTENTION AND SPEAK UP!

 

[lilmac1177]

i agree completely with your post! as we grow with CF, and continue to learn and understand ourselves, sometimes we actually end up knowing more than the doctors do about the disease and the way it may affect our own bodies (as each and every one of us w/ CF is different). so pay attention, take charge of your health and speak up when something doesn't feel right!

i experienced a similar situation during an admission over the summer during which i was having particular trouble keeping my oxygen saturation up. i also have an acute issue with anxiety and one evening in the hospital, i asked for some Ativan. i told the doctor (i'm not sure if a resident or intern or what ... i need to pay better attention to that myself!) i am usually prescribed only 0.25 mg due to my weight of only 98lbs. sooo, the nurse came in, administered the Ativan via IV and next thing i knew i woke up in another unit of the hospital, considered a step down from ICU, on bi-pap which i'd NEVER had to utilize before. i was alone (my family lives a couple hours from my hospital), i was scared (even at 34 years old!) and it was a mess! the whole milligram of Ativan the doctor wrote for me not only knocked my butt out, but it also caused my O2 sats to drop even more!

so, bottom line...PAY ATTENTION AND SPEAK UP!

 

[SIcklyhatED]

Exactly Lilmac. It's so easy to be passive and let them put the drugs in you without really thinking about it. Granted, being in the hospital can be very disorientating. It takes me a good 2 days to figure out who's who and what my schedule will look like. Next time I will focus on being more active and present in my surroundings for sure. I'm learning to appreciate my body more and more and with that comes the questioning and awareness of what they're putting into it.

 

[SIcklyhatED]

Exactly Lilmac. It's so easy to be passive and let them put the drugs in you without really thinking about it. Granted, being in the hospital can be very disorientating. It takes me a good 2 days to figure out who's who and what my schedule will look like. Next time I will focus on being more active and present in my surroundings for sure. I'm learning to appreciate my body more and more and with that comes the questioning and awareness of what they're putting into it.

 

[SIcklyhatED]

Exactly Lilmac. It's so easy to be passive and let them put the drugs in you without really thinking about it. Granted, being in the hospital can be very disorientating. It takes me a good 2 days to figure out who's who and what my schedule will look like. Next time I will focus on being more active and present in my surroundings for sure. I'm learning to appreciate my body more and more and with that comes the questioning and awareness of what they're putting into it.

 

[LouLou]

Is there any way you two could have an advocate there with you most of the time until you are on the mend when you are admitted? I think it's best to have someone double checking EVERYTHING. Sometimes we may not be well enough to be our own advocate. In my case I do home IVs. I have only been hospitalized 2 times in my adulthood and both times I was an anxious wreck because I didn't like how a single thing was done. I feel if we have that anxious attitude it inhibits our ability to recover. Teach a loved one to do it for you if you have someone.

 

[LouLou]

Is there any way you two could have an advocate there with you most of the time until you are on the mend when you are admitted? I think it's best to have someone double checking EVERYTHING. Sometimes we may not be well enough to be our own advocate. In my case I do home IVs. I have only been hospitalized 2 times in my adulthood and both times I was an anxious wreck because I didn't like how a single thing was done. I feel if we have that anxious attitude it inhibits our ability to recover. Teach a loved one to do it for you if you have someone.

 

[LouLou]

Is there any way you two could have an advocate there with you most of the time until you are on the mend when you are admitted? I think it's best to have someone double checking EVERYTHING. Sometimes we may not be well enough to be our own advocate. In my case I do home IVs. I have only been hospitalized 2 times in my adulthood and both times I was an anxious wreck because I didn't like how a single thing was done. I feel if we have that anxious attitude it inhibits our ability to recover. Teach a loved one to do it for you if you have someone.

 

[SIcklyhatED]

Personally, my parents have always been my advocates and would take turns staying with me in the hospital. But as I'm getting older they're letting me take the reins more, and my incident occurred the very first time that no one else was with me. My older sister, who is a pharmacist, was so pissed off by this that she said next time I'm in the hospital she's just going to fly home for the week xD. She'll scare the doctors, that's for sure.

 

[SIcklyhatED]

Personally, my parents have always been my advocates and would take turns staying with me in the hospital. But as I'm getting older they're letting me take the reins more, and my incident occurred the very first time that no one else was with me. My older sister, who is a pharmacist, was so pissed off by this that she said next time I'm in the hospital she's just going to fly home for the week xD. She'll scare the doctors, that's for sure.