Doctors can drive you nutts

Ok so I just got out of the hospital today... I was in the hospital due to uncontrolled blood sugar... tachycardia and an asthma attack for the past week and a half... the nurses and doctors were great... all except for my insulin... for some reason they had a love with playing with my sliding scale... Im suppose to be taking 10 units if Im under 80 and going to eat and they moved my sliding scale to start at 200... 200 is really high for me and so my blood sugar was way way too high during my entire stay... grrr doctors... the good thing is I see my endo on monday and Im going to talk to her and see what we can do to talk put a note in my file saying that I can self medicate my insulin... because unfortunatly I have to go in for heart surgery next week... has anyone else had issues in the hospital?

Yes, I have. When I was first diagnosed in July I had to go to the hospital for a week. The first day that I was there and I had only had two shots of insulin before then and was just learning about the disease the nurse came in and said that I needed to do the shot with no help. I know that I need to know how to do it on my own but it was only the first day and I just found out that I had this disease. I was feeling really overwhelmed and I started to tear up a little because I still wasn't taught everything that I needed to know. Then the nurse went and told the doctors that I had freaked out and couldn't handle things. Now I know I can't really judge how upset I was but my mom was there and she saw it all from a different perspective. My mom said that I did not freak out but had a few tears which was normal since it was only the first day in the hospital and just found out that I would live with Diabetes for the rest of my life. Then the nurse told my endo and the whole telephone game started. She said that she heard that I lost it and was balling my eyes out for so long but I wasn't. This was also the endo that told me when I was first diagnosed that I didn't take it seriously. She called my house in the moring since I was high but I had no idea! I was very tired since I was high and I was sleeping at 7 because it was the summer as well. When my mom answered the phone she said "this girl is high and you need to get her to the hospital what were you doing taking her to the mall and walking around for hours. She needs to be in the hospital." The thing was that I had no idea what my number was so how was I supposed to know that I needed to go to the hospital since the other doctors told me to wait at home, rest and wait for the blood test results. Which is what I did. Then I got to the hospital and the doctor said why do you think you are Diabetic. I was just like because you called my house and told me to be here because I was Type 1. I just think that it was a little rude especially when I take it very very seriously and do everything that I can to count every last carb. I have always been that way and never in my life have I lost it and balled my eyes out. I have always been a very quite kid who rarely shows her emotions infront of people. What do you think?

I have had several surgeries in hospital.  The hospital staff ALWAYS make me high.  It seems like they don't use any common sense.  After one minor sugery, my BS was 360.  I didn't bring any of my insulin from home.  They told me that since my doc didn't leave any instructions for correcting highs (only instructions for lows), that they couldn't give me any insulin.  Then they told me that I had to eat a meal before I could be discharged.  I pointed out that my sugar was 360 and said I wasn't eating anything until it came down.  When the nurse left the room, my husband ate the lunch and we lied and said I did. 

When I had a c-section, I brought my insulin from home and just did what I wanted - good thing too because they 'lost' my docs prescription for insulin so they didn't give me any!  They also never checked my sugars. When the on-call endo visited me the next day, I explained what happened.  I guess it led to two of the nurses being formally disciplined.

i realize they want you to run a bit high during the surgery as it would be really bad for a low to happen.  Good luck on your surgery - I hope your doc can give you a bit of control over it.  If it were me, I'd make sure I bring my own insulin and if they don't like it too bad.

i'm not quite sure why (well i'm sure it has something to do with liability), but doctors/nurses have specific instructions they have to follow regarding insulin and blood testing regimens. usually, they will test the BG every 6 hours (more if there is a low). normally, they will also only give insulin 2-4x/day, so if you're high in-between those times, they will not administer any more insulin because of their protocol. it's really not the nurse's fault, as they have to follow their own rules. when i as interning at a hospital, we had a lot of diabetic patients administering their own insulin (that's fine by me, but i'm not a doctor or a nurse). 

i know i have complained several times about being in the hospital and having them run consistently in the 300-400s, but (again) they are limited to their protocols. if they let you, i would do your best to handle it on your own. sometimes we aren't capable of doing so because we are too ill/recovering/whatever, but if you think you are able, you can try. 

good luck on your surgery. i hope everything goes well for you and you make a speedy recovery. my thoughts are with you! (and welcome to juvenation!) :o)

While conscious and alert, you have the right to decline any medical treatment. While in the hospital for my c-section, I declined any d-related care, but accepted all other care. I only shared my insulin doses and BG's with anyone from endo who came to check on me 1-2 x's a day. I was polite but firm when the nurses claimed they were "required to enter my BG's... They finally gave up.

Sorry you had to deal with that.. I sometimes wonder what physicians/nurses are thinking ? A few summers ago I was admitted to the ER for a bad case of the stomach flu. After changing into the hospital gown, they told me I could have my pump back after I "had an IV in me and stopped throwing up". Even after explaining that without the pump my (already super high) blood sugar would not go down and maybe even cause me to throw up again, they held onto it. After a few hours and a very angry rant, they gave it back. To this day, I still don't believe they even knew what an insulin pump was or why I needed it so badly.

[quote user="Lindsay"]

To this day, I still don't believe they even knew what an insulin pump was or why I needed it so badly.

[/quote]

Yeah, I think 80% of the medical staff will "give in" if you explain things very clearly to them in a knowledgable way b/c they genuinely don't get it. The other 10% actually know what they're doing, and the last 10% will NEVER admit they don't!

most of the time, hospitals prefer to use insulin drips because they can control the amount of insulin you are getting, whereas with a pump they don't know how much you're getting or how to adjust the amount of insulin. 

i've been in the hospital quite a few times since starting on the pump11 years ago and each time, the pump has been taped to my back where i can't reach it and can't use it. the only exception has been the times for outpatient surgery. they allowed me to wear it and adjust it myself because it was only a few hour stay. 

on top of everything else doctors and nurses have to know, we can't expect them to know how to run all the different insulin pumps. i think this is why they prefer to use the IV insulin because they can have total control over it (even if not good control). 

[quote user="Lindsay"]To this day, I still don't believe they even knew what an insulin pump was or why I needed it so badly.[/quote]

My mom is a nurse, and she pretty much told me that "general" medical professionals are pretty clueless about pumps.  She said that if I ever check into a hospital with it, "they just won't have a clue what to do about it."  Though she went on to say that might not be true everywhere.  Like, she last worked at a cardiology hospital (lots of their patients also happen to have type 2, often insulin dependent) and they handle pumps by putting their CDE in charge of checking up on all things diabetes related with patients with pumps instead of letting floor nurses deal with it...  But by and large, you're likely to end up with floor nurses who don't "get it" beyond simply knowing that it delivers insulin.

She also said that a lot of nurses won't be able to fathom the concept that a patient can manage their own diabetes in the first place.  I was like, "What the hell do they think we do?! "  And she said, "They assume your doctor does all the decision making."  So I can see why they'd think, "Hospital stays are out of the norm, therefore this patient doesn't have the foggiest idea what to do about their blood sugar."

Absolutely wild.

[quote user="Lindsay"]

She also said that a lot of nurses won't be able to fathom the concept that a patient can manage their own diabetes in the first place.  I was like, "What the hell do they think we do?! "  And she said, "They assume your doctor does all the decision making." 

[/quote]

This part of your comment made me chuckle...  I just got a vivid picture in my mind of the phone lines ringing off the hook at my doctor's office!  I guess it would provide a lot more jobs for potential medical receptionists!

[quote user="C"]

i'm not quite sure why (well i'm sure it has something to do with liability), but doctors/nurses have specific instructions they have to follow regarding insulin and blood testing regimens. usually, they will test the BG every 6 hours (more if there is a low). normally, they will also only give insulin 2-4x/day, so if you're high in-between those times, they will not administer any more insulin because of their protocol. it's really not the nurse's fault, as they have to follow their own rules. when i as interning at a hospital, we had a lot of diabetic patients administering their own insulin (that's fine by me, but i'm not a doctor or a nurse). 

i know i have complained several times about being in the hospital and having them run consistently in the 300-400s, but (again) they are limited to their protocols. if they let you, i would do your best to handle it on your own. sometimes we aren't capable of doing so because we are too ill/recovering/whatever, but if you think you are able, you can try. 

[/quote]

As far as nurses go, that is totally true. They are limited to following the written or standing orders for any given patient. After I had my first C-section all of the nurses but one would let me administer my own insulin. None of them would let me draw it. (I was on MDI then) But, I could check the syringe myself, so I was okay with that. Then one night I felt low. I pulled out my meter and I was high 40s. My husband went into the patient/family nutrition room and got me some apple juice. I then called the nurse. When she finally came to my room I told her what happened, figuring she'd want to chart it. Instead she yelled at me. Telling me I needed to call her before self medicating! Are you kidding me? Since when is apple juice self medicating?! My husband told her "Good thing we didn't wait it took you 15 minutes to answer the nurse light!" She then told me she was going to report me to my doctor. Go ahead. He thought she was crazy. So for C-section #2, two years later, my endo just wrote very detailed instructions regarding self testing, medicating, drawing insulin ect. I had no problems the second time around.

I know I just went on a tangent, but it really bothers me, when medical staff, just lump everyone together. Most of the time, when they just assume we don't know what we are doing, or they think they can do a better job. I just want to say to a nurse who tries to come across like they know everything - Live with it every moment of every day then come talk to me!

 

[quote user="Kelly720"]Most of the time, when they just assume we don't know what we are doing, or they think they can do a better job. I just want to say to a nurse who tries to come across like they know everything - Live with it every moment of every day then come talk to me![/quote]

Ohhhh, reading bout that nurse made me so mad for you!

But, in my experience, you're right about nurses (medical professionals in general) making the blanket assumption that they "know better" than the patient...  Because that's usually true!  I think, on the whole, people are pretty clueless about their own health issues...  It's just that people with T1 can't be clueless, so we get more educated than your average Joe.

And I think you nailed it on the head about living "with it every moment of every day."  Nurses may know how to bring blood sugar up or down to a good number, but they do it in the very small environment that is their job, which is also very heavily regulated.  To her, a glass of apple juice for a diabetic is medication that probably needed to be calculated then measured.  She probably couldn't see beyond that and understand that treating a low is just an automatic part of life.

(For the record, having a nurse for a mother was a mixed blessing when I was diagnosed.  She was really helpful with a lot of things, but then she also tried to indirectly control my treatment based on how she was trained to take care of PWDs in the hospital!  I really had to put my foot down on making my own decisions and following the CDEs' recommendations.  I may be biased because of my mom, but I've developed the theory that most nurses are probably type A personalities. :p )

The day I was diagnosed my nurse came in after the doctor had left and asked me if I needed some juice (she saw that I was a little shaky/shocked from just getting the diagnosis). My bg was in the 500s and she thought I needed juice?! After going through the training later that day and learning that you have some juice when your bg is low, I was shocked that had asked me that earlier. She must have confused me with another patient or forgotten that I was very newly diagnosed!

It always surprises me that hospitals are so behind the times when it comes to dealing with diabetes.  Before giving birth to my son, my OB-GYN reassured me I would be able to administer my own insulin while in the hospital.  But that was ignored while I was actually a patient. 

I didn't make a big deal of it with the nurses, because I understand they have to follow protocol.  When they weren't in the room I'd take correction boluses and eat to correct a low.  The only problem occured when my doc authorized me to hook my insulin pump back up a couple days after my C-section, but didn't put that on the chart.  I had to fight off 2 nurses who were insistent that I get my scheduled shot.  They acted like I was some crazy patient denying my diabetes, not someone who'd had the disease for 28 years with a 5.1 A1c.  Diabetes education is desperately needed in the medical community, but I'm not sure how to make that happen. 

You know, I don't expect these non CDE nurses to understand T1 in great detail, nevermind understanding how to use the various insulin pumps, meters, etc. But, what I think has the majority of us mad (including myself!) is a lack of respect for our knowledge. I think it's a sign of professionalism to admit if you aren't familiar with something and ask for help. How else do we learn new things in our careers???

I'm wondering if other adult onset t1s have had this problem - when my husband was diagnosed about a month ago, we were sent to the hospital by our primary care doctor, who let us know that he suspected he might have type 1.  The diabetes educator saw him in the hospital before we ever saw a doctor, and she thought that based on his lifestyle (active, healthy eater, not overweight) and the fact that he'd lost a ton of weight over the past few weeks, he was type 1.  It took the hospitalist almost two days to come see my husband and give him a diagnosis and prescriptions.  He told us my husband had type 2, rattled off some prescriptions, and told us we could leave.  He didn't do any tests.  He made the call based solely on my husband's age (30).  Luckily, my father-in-law is a retired podiatrist who knew an endocrinologist.  He convinced the hospitalist to call him up and get his opinion.  I think the hospitalist got a bit of an education that day when he learned that adults can be diagnosed with type 1.  It was news to me as someone who knew nothing about diabetes a month ago, but should it have been news to him??  I've since heard that this is a common problem and that many type 1 adult onsets are initially misdiagnosed as type 2s.

[quote user="Mandiee"]

... the good thing is I see my endo on monday and Im going to talk to her and see what we can do to talk put a note in my file saying that I can self medicate my insulin... because unfortunatly I have to go in for heart surgery next week... has anyone else had issues in the hospital?

[/quote]

In addition to talking with your heart surgeon before your surgery, ask (demand) to talk with the anesthesiologist for your surgery. That is usually who will be monitoring your blood sugars during the surgery. THey will have you run higher (to prevent lows) and probably control BG via insulin in your IV (vs your pump or shots) but you should be able to talk with them to understand and agree on how they plan to control BGs during the surgery. I would also talk with the heart surgeon and your cardiologist making sure that they are aware of your target BGs and get them in agreement as well on how often your BG will be tested, how to correct for highs or lows as you are recovering. If they need to all talk with your endo too, get them to do it. You don't have to agree to any treatment unless YOU are comfortable with it and you should be able to see that it is all in writing. Since it sounds like your last visit was an emergency, they didn't have clear instructions so they did what they wanted and "think" is best. For this planned admission for your heart surgery, you have more control and can make sure you are comfortable with everything before they start the surgery. (And if any of the surgeons complains about you wanting to see all of this in writing, get another surgeon.)

I hope your heart surgery goes smoothly and that you have a better experience this time!

Hospitalizations are no fun at all for so many reasons, but one of the most annoying parts to me was how the nursing staff dealt with my insulin. When I went in to deliver my baby it was planned so I made sure that everyone knew that I was keeping my pump and that my OB and endo had discussed in detail what the plan would be to keep things in line. This worked well until an overnight nurse decided she wanted to take control. I had to actually refuse treatment from her and make an issue of it to get the head nurse involved, but it is my body and I don't like anyone to cause more issues than good. Other than that one person things went well on that visit.

This past Winter I had my first instance of DKA in over 11 years and ended up in the hospital. The staff did well while the doctor was constantly monitoring me, but once the gap closed and he wasn't on top of things as much they really screwed me up. They decided that they were not going to allow me to have insulin, but wanted me to eat. I tried to fight it, but after not eating anything for 3 days I was too weak to fight anymore and gave into the food. As we all know, food with no insulin is not a good thing for us. I shot way up and then had to beg for insulin, again getting the head nurse involved. The next morning the diabetes educator and quality control nurse came to visit and I told them what happened. I was told that the nurse misunderstood the doctors orders and didn't think about food intake requiring a change to the plans.

My suggestion, talk to the diabetes educators up front, get them involved, and don't let them force you into anything. It is your body and you have the right to accept or postpone treatment.

Also make sure to take your own insulin, glucose tablets, and glucose meter to the hospital with you.  That way you can take care of yourself even if the nurses aren't authorized to allow insulin or extra food at a certain time.