Because this is a well visited forum, I need some help. Update #29

[kaylabelle05]

Email to my Urologist. I can't re-type this without breaking down. Please, I need information on how to take off the label "drug seeker" on my head.

My name is Dagny. I am a patient of Dr. C's. She has been seeing me for reoccurring kidney stones. I saw her on 9/18 because I kept having kidney stone attacks on top of being pregnant. She said I needed to come in after delivery to have lithroscopy done along with a possible stent. She also wrote me a note to take with me to the ER if I happened to have another kidney stone attack. Well I have had 3 since. I have been in contact with my OB, Dr. Z and on Friday, 9/28, I started having a moderate attack. I went into Dr. Z's office to talk with him about pain medicine as he said he would be the only prescriber because of my fear that the hospital has me labeled as a drug seeker. He did prescribe me Fentanyl lozenges for pain control but I am unable to get it filled due to insurance hoops that have yet to be fulfilled. I would take regular oral narcotics (like Vicodin or Percocet) but they cause horrific heartburn even with taking an OTC acid reducer. Well this evening, my fear was confirmed. I had another "attack" (as Dr. Y called it) this evening, 10/2/12, at 7:15pm. It was so bad and happened so quickly that I had a neighbor call 911 for me. I was out of my mind with pain. I get there and was told that they would be getting me pain medicine immediately. I thought I would get relief within 20 minutes. I had to wait 2 hours. By that time I had no IV and the doctor only ordered a fetal ultrasound. I was suspicious when the doctor talked to me and had a tone to his voice that did not sound like he believed me. I saw him on 9/1/12 for my 2nd stone attack and got the feeling he didn't believe me then. And he confirmed what I thought were his beliefs when I asked for more pain medicine and my nurse told me Dr. Y refused to give them to me based on my lack of evidence on previous visits. Then he basically outright said it when he told me "I am concerned with how many times you have come into the ER for pain." I even contacted the on-call doctor for my OB/GYN with the hope that the doctor could talk some sense into Dr. Y. But now I fear that the on-call doctor will tell all the OB's that I am a drug seeker and I won't get help from them either. I will be talking with the hospitals Admin about Dr. Y but also this stigma of basically faking my pain to get pain medicine. Each one of these supposed faked attacks have no real proof that I am passing a stone. There is no blood in my urine and there is no hydronephrosis. But yet I am having pain in the exact same place as my previous kidney stone attacks and even though I have not caught a stone, they are magically disappearing from my right kidney. And the pain is just as severe as the attacks I had in 2005 while pregnant with my daughter. I know this is not a place to ask for medical advice. My first hope is that you pass this along to Dr. C. My second hope is that I can get some idea on what to do if another one of these attacks happen. I was told in so many words that if I came into the ER again with this "faked pain" I would be refused treatment. I doubt I will make it through the next 18 weeks without another attack as I even left the ER this evening without my pain being controlled.

I left the ER sobbing. Heck as soon as Dr. Y left, I broke down and cried for 15 mins. I honestly don't know what to do anymore. I have done everything that every doctor has asked of me when I have these stone attacks and even before this, I follow my doctor's instructions to the letter. I cannot live my life with these stones. And now I am being told I am faking my pain and that I will no longer receive pain control at the local ER. And I having a sneaking suspicion that Dr. Y will be letting the 2 other local ER's know that I am a drug seeker. One of them is affiliated with the ER I go to.

Does anyone have ANY advice they could give me? I don't know where to go from here.

[mom1mg]

I would do two things --
Tomorrow call your regular Dr and ask them to provide you with a letter AND a contact number (pager) that you can take to the ER with you if this happens again.

ALSO - Call the hospitals patient safety line or complaints office or social workers office. All major hospitals should have one of the above. Just dial the main number and tell the switchboard operator you want to make a complaint about the care you recieved and they will direct you to the right department. You need to file a formal complaint about the treatment you recieved. I would go so far as to ask them to copy your complaint into your medical records for future reference.

THEN - I would probably ask your Dr to refer you to a pain clinic. Again most hospitals have one. I am not sure if they can treat acute illness but since this sounds like a chronic thing they may be able to help you out and would be far better to deal with them then whoever is on-call with the ER. IF that doesn't work I would ask your OB if from now on you can be treated in Labour and delivery instead and see the OB on-call instead of going to emerg. In general I've found the ER just doesn't know what to do with pregnant people.

Sorry you are going through this mama! If you have this Dr again you can always ask to see someone else. I would just explain to the nurse that you have a complaint in against this Dr and would prefer a different person to treat you. They "should" understand.

[Foolalex]

I have no real advice, but I work in the health care field. Sadly, "frequent flyers" to the ER do get treated this way. Pain is not something we can prove, unfortunately.

One thing you can do is contact the Joint Commission and make a complaint. They investigate concerns reported by family and patients.

I hope that you can find some sort of advocate to help you out! In the meantime,

[holly6737]

So there is no evidence of stones and the only pain med that works for you are iv narcotics? While I'm not saying I don't believe you, that is a classic presentation of pain seeking behavior. So I really don't blame dr y. You're asking him to give you a very heavy medication (IV dilaudid might as well be heroin for all intensive purposes) with no real objective evidence of there even being a problem. He has to protect his license.

That said, I think your best bet is to go to a pain clinic or explore having the stents placed while you are pregnant. Ive seen it done before.

[kaylabelle05]

Originally Posted by mom1mg THEN - I would probably ask your Dr to refer you to a pain clinic. Again most hospitals have one. I am not sure if they can treat acute illness but since this sounds like a chronic thing they may be able to help you out and would be far better to deal with them then whoever is on-call with the ER. IF that doesn't work I would ask your OB if from now on you can be treated in Labour and delivery instead and see the OB on-call instead of going to emerg. In general I've found the ER just doesn't know what to do with pregnant people.

One of the first people I started to contact when I started these attacks 6 weeks ago was a Pain Management clinic. After them giving me no answer, I finally did get to talk to someone and they said they would not see me while pregnant. I did not want to see them for narcotics. I wanted to see them for a note to the hospital to get treatment because of Dr. Y's treatment of me 4.5 weeks ago.

Ooooh I will ask my OB when I go in tomorrow about going to L&D. I never thought of that. I am not calling the office, I am going in.

[kaylabelle05]

Originally Posted by holly6737 So there is no evidence of stones and the only pain med that works for you are iv narcotics? While I'm not saying I don't believe you, that is a classic presentation of pain seeking behavior. So I really don't blame dr y. You're asking him to give you a very heavy medication (IV dilaudid might as well be heroin for all intensive purposes) with no real objective evidence of there even being a problem. He has to protect his license. That said, I think your best bet is to go to a pain clinic or explore having the stents placed while you are pregnant. Ive seen it done before.

I totally get what you are saying. And this has been my fear since this first started back in 2005. With DD, I had blood in my urine until 36 weeks and then no more blood. It totally stopped. By that time I had been in the ER over 10 times, admitted 4 times for pain control and I have no idea how many stone passed as I never caught any but they kept disappearing and reappearing in the U/S they did.

I honestly have tried oral narcotics. In fact, I had way too many at home. they kept giving them to me even after I asked them not to. I didn't use them and if I did, it was 1-2 per bottle of 30. And now my heartburn told me this weekend (I was trying to stay out of the ER as DH & DS were camping) that that was a bad idea. I slept upright with my chest on fire from my heartburn. With Zantac being taken at every Vicodin dose plus Mylanta and Rolaids.

I have tried Dilaudid too. And I have BAD reactions to it; projectile vomiting, uncontrollable shaking, and hallucinations.

And because I have been through this over 20 times, I know what works and what doesn't. I would take Toradol in a heartbeat but I can't while pregnant. And not one medical person has given me a safe alternative for pain control while pregnant other than narcotics. Trust me, I have been asking since my first attack in April 2005.

I know that everything I have done, said, or tried makes it sound like I am drug seeking. But how does one get around that if they actually have a pain problem? And I tried Pain Management. They won't take me until I deliver.

I have done everything I have been asked to do and even did things (like contact Pain Management and Urology without anyone referring me) that I figured wold be helpful. I listed to what my doctors tell me to do and ask them what I need to do to help them and help myself. I do not like the position I have been put in.

[kaylabelle05]

Originally Posted by Foolalex I have no real advice, but I work in the health care field. Sadly, "frequent flyers" to the ER do get treated this way. Pain is not something we can prove, unfortunately. One thing you can do is contact the Joint Commission and make a complaint. They investigate concerns reported by family and patients. I hope that you can find some sort of advocate to help you out! In the meantime,

I thought Joint Commission was only for military hospitals. And do they do small hospitals?

Thanks you.

[holly6737]

If urology is seeing you for the stones, urology needs to be writing you pain scripts and be the admitting physician. Them passing it off to the ED doc is lazy medicine. What is their plan for you? I would make an appointment and have a come to Jesus with your urologist. These stone attacks are his/her problem, not the ED docs, and they need to create a workable Plan for you that doesn't involve going to the ED.

[kaylabelle05]

Originally Posted by holly6737 If urology is seeing you for the stones, urology needs to be writing you pain scripts and be the admitting physician. Them passing it off to the ED doc is lazy medicine. What is their plan for you? I would make an appointment and have a come to Jesus with your urologist. These stone attacks are his/her problem, not the ED docs, and they need to create a workable Plan for you that doesn't involve going to the ED.

That is what I keep saying. I wish these doctors had common sense like you.

My Urologist's plan? Wait until I deliver and have the OB do everything. Then when I deliver, possibly put in a stent and do lithroscopy for the stones that I have not passed. Great plan, huh?

[Foolalex]

Originally Posted by kaylabelle05 I thought Joint Commission was only for military hospitals. And do they do small hospitals? Thanks you.

The hospital I work for isn't military and is fairly small. The Joint Commission has flyers up on how to report complaints to them about quality of care.

Check out their website:

http://www.jointcommission.org/report_a_complaint.aspx