Hi, my name is Tom, I am using my wife’s account to write you. My wife, Jane, has been advocating for a long time now. Unfortunately, she fell during a doctor’s off, face first off of the exam table. That was the beginning of the nightmare that I now find her in today. She is unable to contact you herself, or she would be the one contacting you about my question(s) . I want you to know that she is not only a pain patient advocate, but also she is a medical researcher and was working for a large hospital system here in mid-west. She has POTS (Postral Orthostatic Tachycardia Syndrome) initial fall came during an appointment with a new cardiologist. She fell off the exam table, after the doctor asked her to stand up to see how orthostatic she was at the time. She also had Chiari, and has had multiple surgeries, none of which has helped her. During the hospitalization, She was put into an induced coma, it was to help her because she had major brain swelling due to the trauma caused by the fall. She fought hard and she was completely off of the ventilator for three days, then she developed pneumonia, she was put back onto the ventilator immediately. While in the coma, a doctor decided that she needed to have a routine urine test, and they also did a urine drug screening. They tried to say that she didn’t have the right levels of medication in her system. They forced me to leave her side for 4 days as they went through the cameras in the ICU. (I guess they thought I could have somehow get into the locked pump? Impossible, right?) After they re-tested, the results were the same, but she supposedly tested positive for “Norco.” The entire situation is ridiculous! How would they know what medication in that group it was specifically, and how in the world could she have taken it with a trachea in? Then things got worse. Suddenly, her palliative care provider decided that she was “too complex” and they dropped her. Then, her pain doctor (doctor that writes her prescriptions) was raided and all patients were dropped, if complex or needed high doses. And now she is still in the hospital without a pain management doctor to follow her after she gets home. I believe in my heart that she is a fighter, and will pull through this. But I don’t know how to fight this. I have talked to patient advocates, her close relative spoke with the president of the hospital (Her relative is an attorney and retired from the deanship at a Law School) and the hospital keeps maintaining that they cannot help, and there was no way the urine test could have been wrong. They are so corrupted! We requested an immediate blood test when we were told that she had “Norco” in her system, but it never happened. Then, yesterday, the head of the anesthesia department came to see her to see how she was doing. During this visit she informed her father and I that as of June or July of 2019, there will not longer be a diagnosis code for chronic pain. And that they will be placing a number of pills needed for any surgery someone may have. For example, they will only allow three days of low level opiates for a same day surgery. Possibly up to 7 days for back surgery, etc. I asked for any paperwork that she may have regarding this, and she said that she would bring it to me when she comes back next time. I was in such shock, I failed to ask if it was going to be a state or federal law. Jane would have known what to ask, but it comes naturally because of her training in medical school, and working for the hospital (different hospital system than where she is currently inpatient.)I apologize for my lack of all of the correct medical terminology, I am learning in the moment and I may have misspelled some or many of the medical terms. Do you have any advice you can offer me? Have you heard anything about this change in chronic pain diagnosis codes? She basically said that there will no longer be a classification for chronic pain. If you have any advice or information that may be helpful, please message me back! I have lost trust in anyone working in the hospital, they all join together as a corrupt group that will never correct anything that another doctor has said or done. I have heard over and over again that “If Dr. X said that, then it must be correct.” I have also been informed that the only medication that she will be able to go home with is Suboxone or Subutex. (sorry if I butchered the spelling) I have reached out to other people in the chronic pain community that knows her personality, and 4 out of 5 told me that you were the one to contact for advice and guidance. I apologize for reaching out to you on this platform, I wasn’t sure how to best contact you. I look forward to hearing from you! Happy Holidays!
“as of June or July of 2019, there will not longer be a diagnosis code for chronic”
A year or two ago the diagnosis coding system ICD9 was replaced with a new and revised ICD10 codes and the number of diagnosed codes were DRAMATICALLY INCREASED. Here is an example of the number of ICD10 codes referencing pain https://www.icd10data.com/ICD10CM/Codes/G00-G99/G89-G99/G89-/G89
Putting a pt on Suboxone or Subutex will virtually automatically have someone put a ICD10 code of “opiate use disorder” on her list of health issues. Would almost guarantee that a pt will not get a opiate for pain in the future.
Here is a article that I authored about the reliability of urine tests http://nationalpainreport.com/when-the-urine-test-lies-8833834.html
No blood/urine test is guaranteed absolutely accurate and reproducible, it is claimed that with a urine test that you can expect a 20% +/- false positive/negative. And urine tests are defined as “qualitative test” the substance that you are looking for is either there are not… it is like a pregnancy test – you are either pregnant or you are not based on the presence or absences of a single hormone. For the hospital to say that “the right quantity” did not show up in a urine test is PURE BULL SHIT !
Blood tests are “quantitative tests… the come back with “how much” of a substance is in the blood. They can also vary from one test to another.. it just depends on what you are looking for because the body has numerous biological cycles and values can/will vary given the time of day that the sample is taken, taken on empty stomach or not … etc…etc…
The best non-medical reference I can give is to ask a person to take out their driver’s license and ask them to make a comment on the pic on their license and is it a good reflection of how you look or have looked in other photos ?
I do not know if this hospital is just one large hospital in the mid-west or a teaching hospital, if the all the healthcare professionals are independent practitioners or JUST EMPLOYEES of this corporate healthcare system… but I don’t think that this story and this pt’s issues concerning her pain management will have some more things coming to light.
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