Hello friends! Can I just vent about my HORRIBLE doctor experience. Ok. So no one ever warns you that when you become a diabetic that you will have more than just your disease to worry about. I was dxd in 2012 with T1 diabetes after a misdiagnosis of gestational (well, to be fair I WAS pregnant) and then T2. I've shared my story here before. And to complicate matters my husband is in the military and we move around...alot. That makes having consistency of care near impossible. I was originally dxd and seen by endo but then handed over to be managed by a Nurse Practitioner. That's just how the military hospitals do it, and the first one I had was Awesome. She was so great. Unfortunately we moved right after. The next place we lived was also a military hospital and I was also seen by ONLY another NP. I think maybe an endo looked over things once in a while? Who would know? The whole year I was there I only ever saw this nurse. She started me on an insulin pump at my leading because I had originally started the process with my first NP. In retrospect I probably should never have gone on the pump with so little knowledge of what it was like to live as a T1. When I started the pump no one ever told me a could (uh, and SHOULD) adjust my own basal rates. This nurse was such a control freak and I think probably told the endo's what to do. She was horrible. I learned nothing about diabetes while I was with her. Thankfully, we moved after living in the area only a year. I could have spent my whole life thinking that basal and bolus rates were something only doctors had the ability to control. So after we moved I looked for another endo- this time I was able to find one NOT in a military hospital. I got a referral from my insurance company. Called a practice and waited 4 stinkin' months to get in only to have them cancel on my the day before my first new patient appointment. Seriously. I'm on an insulin pump here people. Something happened to the doctor or something like that. So I had to make a new appointment with another endo. and I had to wait another 3 months to see him. So I had been on a pump for 9 months- started off by a clinic that had the policy that the patients don't control the settings, and then I moved. I was on my own for 9 months basically with little knowledge about how to use the pump. My bs was not controlled as you can imagine. So the endo that I did end up seeing put me on the right path. He was a jerk, but his office fully supported medtronic and pump users. He put me in contact with my local rep and she was amazing and getting me the right education I needed. I still have SO MUCH to learn. Well, so I've had one good experience but we moved (AGAIN) at the beginning of the summer. I being the good patient that I am thinking that now I am a worldly wise about endos and what I need as a pump patient went ahead and got my referral asap. I looked online and read about the endocrinologist I was referred too. People complained about the wait times and some billing/insurance claims but it didn't look out of the ordinary for any of those online doctor review sites. I called the office and specifically grilled the receptionist if this practice supports metronomic patients and insulin pump uses. I made sure to ask if they have the technology and equipment to download my pump information and the receptionist reassured me that "oh yes, we do." Well, she was a BIG FAT LIAR. I have never EVER had an experience quite like the one I did today. First of all I drive to the office and they are in a horrible part of town (not unheard of- a lot of times hospitals are not in the best section of town esp. in big cities) well, the office is in a house. Yes, a house. Like from the 1940's complete with nasty walls and ceiling and a front porch with outdoor carpet. The inside is AWFUL. I can't even describe. The plaster is crumbling. The sign is old. There are NO SINKS in the exam rooms (which are like the small bedrooms because this was a house). The parking was awful but I'm not even going to go there because it's a house with a driveway. I called because there was no way to park without blocking someone and the receptionist informed me that the practice is also the two little houses to the left. I go in and wait an hour to be seen. There are other patients in the waiting room(/living room)so I'm not completely freaked out. I guess the nurses were coming in from the left of the waiting room (which I guess is the kitchen). One of the patients had to have a urine sample and this is how I know because the nurse comes out of the nurses area(/kitchen) with a cup, hands it to one of the patients sitting with all of us in the waiting room(/living room), and that person takes the cup to the bathroom. When the person is finished the nurse walks across the waiting room goes into the bathroom and collects the cup, carries it across the waiting room in front of all of us waiting back into the nurses area(/kitchen?). I guess I should have probably just walked out right then and there. During my exam the endo performed the correct exam (that I've experience before with other doctors so that was okay). His "technology" of handling my insulin pump was me showing him where my basal rates were set and my ISF and carb ratios which he entered on a computer that was from the 1980's. Did I mention there was no sink in the exam room? He wrote out my information in either a different language or he was just scribbling. He told me nothing that I didn't already know. His assistant took my blood but refused to tell me what the doctor was testing for or she didn't know. I pushed for her just to get my records from my last endo because I had just had a full panel of blood taken. So at the end a new nurse comes in and takes me to another house. Which is another old, smelly house and tells me she is going to test my nerve/neuropathy with a machine to see if I have any nerve damage. Now, I am so curious because I have never heard of anything like this. ALL my doctors and nurses have just tested my feet with the little silver thin thing. So this "machine: is two mirrors you step on with your bare feet and you put your hands on two mirrors and stand like this for 5 minuets. Have any of you done this or even heard of this. I don't know if its a real deal or if it's a quack thing or what?! I was in so much shock from the whole experience I just don't even know what to think! I am not a dramatic person. I am a normal person with diabetes who just wants help! I have three small children. I want to live the best life possible with diabetes. I WANT to take care of myself. I hit the gym every day. I watch what I eat. I am motivated!!! I did call metronic and get the name and number of my local rep here. I am anxious to talk to him about my experience and get some information on who to see and where to go, and hopefully my insurance company will cooperate. I am also going to call them and ask what are they thinking referring people out to this guy?! I'm so discouraged. This diabetes thing has been so frustrating, and some of it is our military lifestyle and the moving around most recently. I don't even know if the military healthcare system should even recommend the pump to it's patients! Anyways, sorry to write so much I just needed to get it out.
Hey, never have to apologize for needing to vent...it is part of the disease in my experience. I have found that one of your best resources is one of the local Medtronic trainers when it comes to the pump.I have been on the pump about 5 yrs. now and been a T1 from the start when diagnosed in 1995. My first Endo when I moved to Ohio and medtronic rep when I went on the pump were ok, but didn't tell me about having an emergency back up plan if my pump failed and didn't do a lot about adjusting my basal rates when looking at my graphs. However, when I added the CGM system about a year ago I had a new Medtronic rep and she is great!! She told me about a different endo since I wasn't happy with the one I had and he is fantastic. I used to have 3 basal rates in a 24hr period and the new endo looked at my graphs and set up 8 rates in a 24 hr. period. I feel so much better now it is amazing. I will say my Medtronic trainer and I spoke about adjusting my rates before I exercise by setting a temporary basal but she said she is not supposed to tell me to do that right out...but to discuss with my doc first which I did and I agree 100% with her since I am an RN and don't believe folks should try these things on their own right away. I do hope you find a good endo and trainer since it can make this life as a diabetic a whole lot easier! Good luck!!
MKSSS- I am so sorry to hear the problems you have had. I think TuD is a good place to vent and get support. I had gestational diabetes, was misdiagnosed with T2 almost 20 years later and then finally diagnosed as LADA by a Nurse Practioner- not the endo who had seen me for 2 years. It took a while longer before I started on a Medtronic pump with a different endo. But I am a fan of PAs and NPs now.
Possibly the Medtronic rep could tell you who takes T1 patients, but I don't know if they can render an opinion about who is the best endo. Probably your own assessment is the best.
I thought it would take me 6 months to learn what I needed to do to use the pump. It takes longer. You can read some of the diabetes books and participate in the webinars on TuD. Can you get an appointment with a Certified Diabetes Educator? I go to a nutritionist who is also a CDE. She takes time with me and is a huge help.
There are many on TuD who have been unhappy with medical care for PWD in one way or another. The reality is that you have to be your best advocate. A friend of mine gave me good advice many years ago. "If he/she was your OBGYN, would you go back?" It's easier for us to answer that question.
Stay with TuD. There are many others who can help.
Thank you for the encouragement. I'm learning at stages how much of an advocate I need to be for myself! But in order to advocate for yourself you have to KNOW what you are advocating for. There is so much to learn about diabetes. I think that's my experience thus far. I'm trying to figure out what are acceptable and not acceptable levels of care. My first diabetes experience was so good. My first NP was awesome. She was awesome, and unfortunately we had to move. I feel like I could have learned so much more if we stayed. I guess I can look at each bad experience I've had and think "well, now I know." It's just so exhausting! And frankly hugely depressing. Who knew (that at least for me anyways) the administering insulin, eating right, checking blood sugars all day long, making sure I stay in good physical shape would be the easy part of this disease?!
Wow!I can't help you with the doctors, but you can help yourself with this book. http://www.amazon.com/Pumping-Insulin-Everything-Need-Succeed/dp/18...
I met John in 1987 at a bicycle race. He finished with a 400bg and I had a 135 after going low in the middle. We were on the board of International Diabetic Athletes Association back in the dark ages. Anyway, the book is a step-by-step guide on how to adjust everything!
I just ordered it. Thank you!
Oh dear, that sounds just awful. You're getting good ideas here.
You might want to ask your rep, ask them for dr suggestions, even CDE suggestions. When my HMO lost my endo (and others were not taking new patients) I hooked up with a wonderful CNP. She can do just about what any Endo can. She does more than he did, and spends more time as well.
Might try purchasing the book Pumping Insulin. It's got great tips and things you can work through. You eventually wont think twice about making your own adjustments. You just need someone on your medical team to review them with, lending their opinion and hopefully providing you with a meaningful discussion.
You may want to also check out additional books--Think Like a Pancreas and Take Control Of Your Diabetes (available on the TCOYD website. You can read them several times and still get information from them.
I second these great resources. MKSSS...I am impressed with your perseverance and bravery. That house based endo sounds like a nightmare. Was that in the US? I have to admit my overwhelming anxiety over getting the right endo. Managing this illness is very demanding. I agree we need to be proactive. And we need lots of support from doctors, family and friends. Thanks for your willingness to share.
Yes! But the doctor was from a different culture so maybe he didn't really see any big deal operating out of the house?! It was really just bizarre. Thanks for letting me vent.
I did get Think Like a Pancreas at the beginning of my dx and it was (IS) very helpful. When I realized that I need to be the one to control my basal settings I was able to go back to the book and had an "aha!" moment- so THAT's what he was talking about. I just ordered the 'Pumping INsulin' book as well.
"Think like a pancreas" changed my life!