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My Surgery Story - by Stephanie
Medical Emergencies: Being Prepared - by Aaron Rolnick
My Lesson: Don't Be Ashamed of Being on Methadone - Linda (California)
Announcement - 501(c)3
Post Surgery Pain (Mis)Management - Annette
Letter Writing Made Simple - by J.L.S.
Last year, I had major surgery on my foot. They had to place three screws and fuse bone to my heal. At first, the anesthesiologist tried to talk me into a spinal. He said that I would have very bad pain post op, and due to my tolerance to narcotics, pain relief would be a big problem. His rationale was that the spinal would still have some effect during the immediate post op time. I said, "absolutely NOT!" I wanted to be asleep.
Anyway, when I woke up, I have no words to describe the pain I felt. In the recovery room, I was given morphine X2. . . with minimal relief.
Once I got to the regular floor, that was when the horror began. At first, I was given Demerol 50mg IM—it was as if they gave me nothing—I complained. Three hours later (and I watched every minute go by!), I was given 75mg Demerol, Vistaril 50mg IM—again, I literally felt as if I received nothing at all.
I was in severe pain, and there also was a problem going on as I was bleeding through the cast. After I complained that I was still in pain, the nurse comes back into the room and says, "let me get something straight with you--IF there is an order for your methadone, you will get it—and even IF there is an order, that doesn't mean that you will get it right away. I have other patients to take care of." I hadn't even asked for my methadone; she just ASSUMED that must be what I wanted AND, of course, more drugs.
Normally, I would have screamed, but I just couldn't. . . I was in pain! However, I did call the patient representative, nursing supervisor, and administrator on duty—all 10 minutes apart—and complained about this nurse's unprofessional behavior. Anyway, to make a long story short—I never did get anything else for pain. They were not able to give me morphine as floor nurses at this particular hospital were not allowed to dispense morphine. . . except in the ICU.
One more thing—upon discharge, the resident [doctor] had to come down and write me a discharge pain med (as my surgeon forgot to). He says to me, "well, how about I give you Tylenol #3 with Codeine—after all, you are already on methadone, and that is for pain." I could not believe what I was hearing!!! I shook my head back and forth and said, "I cannot believe you people! Why give me anything at all? From what you are saying... theoretically, I should have no pain at all. . . ever. Is that what you mean?" He smirks and says nothing.
It was a learning experience and I will never, ever go into the hospital again without having every single detail worked out in advance.
Editor's Note: The anesthesiologist in the story above was wrong when he said, "due to tolerance to narcotics, pain relief would be a big problem." Treating pain in methadone maintenance patients is not a big problem. Pain relief IS possible in maintenance patients—even those on a "blockade dose."
However, methadone-maintained patients should NOT not be given large doses of Demerol as it can cause seizures. This patient was given very poor medical attention.
Contrary to the opinion of the doctor in the story above and on p. 3, maintenance patients need a higher--not lower--dose of opiate medication than opiate naïve patients would need to treat pain—and pain meds may need to be administered more frequently than in opiate naïve patients. Once stabilized, methadone maintenance patients are completely tolerant to the analgesic (pain relieving) effects of methadone—also contrary to the belief of the doctor in the above story—a patient's maintenance dose of methadone has no value in pain relief. (See CSAT's TIP 1, "State Methadone Treatment Guidelines," p. 55. To order this TIP or the series, call (800) SAY NOTO and ask for the TIP/TAP series. They will be sent to you free of charge).
Furthermore, doctors should not be overly concerned with prescribing sufficient opiate medication, since methadone- maintained patients on a blockade dose will not become intoxicated from opiates—at least at the dosage used for pain relief. A "blockade dose" of methadone will block the intoxicating effects of opiates but will not block the pain-relieving effects of such medications (See TIP 1, p. 54-55).
Thus, the problems methadone patients sometimes have with adequate
pain relief are not the fault of methadone maintenance treatment or the
patient. On the contrary, these problems or "difficulties" are the
result of improper pain management by doctors who are ignorant about how
to treat pain in methadone maintenance patients.
A medical emergency can happen to anyone at any time. Making arrangements for your care in advance of an emergency is important for everyone, and particularly significant for methadone maintenance patients.
Many methadone patients have typically (and understandably) been reluctant to inform health care "professionals" about their methadone treatment because of previous "bad" treatment or attitudes on the part of these professionals, including being seriously undertreated for pain. But, there are several reasons why medical personnel should know of your methadone treatment. For example, the administration of opiate antagonists or mixed agonist-antagonists can cause severe withdrawal syndrome. Other medications can affect the body's metabolism of methadone, resulting in onset of withdrawal syndrome. If narcotic pain medications are required, methadone patients need higher doses of medication more frequently to achieve the same degree of pain relief as an "opiate-naïve" patient.
It is especially important to be prepared before an emergency arises in case you should become incapacitated and unable to tell medical personnel anything. The simplest way to make sure that medical personnel will know you are on methadone maintenance (in case you are unable to communicate that information to them) is to carry a "medical alert card" or bracelet. Such a card or bracelet would include pertinent information, such as: a statement that the patient requires a special medication on a daily basis (methadone), a list of medications which should NOT be administered (unless absolutely necessary, such as in the case of coma or to prevent death) because of potential drug interactions or allergies, and the name and phone number of the treating clinic and/or doctor(s). A medical alert card or bracelet may also state the existence of any other medical conditions, drug allergies, and prescriptions. A medical alert card/bracelet is especially vital for methadone patients who have other chronic diseases or conditions (i.e., diabetes, hepatitis C, HIV, etc.).
If you are to undergo surgery or any procedure where general anesthetic will/may be used, you may want to talk to the doctor(s) prior to surgery about any concerns you have and give them literature/information about methadone maintenance treatment. (DONT can provide such literature or direct you to the appropriate internet site to obtain it).
Many methadone patients carry a signed form letter given to them by their clinic physician. This form letter is for methadone patients to give to their outside physicians and health care providers or to carry in a wallet or purse in case of a medical emergency. The form letter signed by the clinic physician provides all the necessary information about methadone treatment, along with information on how to contact the clinic physician if more information is needed. This form letter explains important aspects of methadone treatment; for example, that methadone maintenance patients are tolerant to any analgesic and sedative effects of their maintenance dose, along with how to properly treat pain in methadone patients, and lists medications that should be avoided.
If your clinic does not provide such a form letter for patients, there is one such sample letter on page 28 of TAP #7. TIP and TAP manuals are published by the Center for Substance Abuse Treatment, a government agency, and are available free of charge by calling (800) SAY-NOTO. You could order TAP #7, show the sample form letter to your clinic physician, and suggest he or she make up such a letter for patients at your clinic.
You may also want to give an extra copy of this letter to a family member or friend who can give it to medical personnel in case you are incapacitated during an emergency. This brings up the subject of a "Patient Advocate." A patient advocate is a trusted family member or friend who may either make medical decisions for you after you've given the person that power, or make sure your wishes are carried out in the event you are unable to do so--for example, if you are unconscious, in a coma, sedated, or otherwise incapacitated. The individual you choose for your advocate obviously should have your best interests at heart—someone that you can trust. Obviously, your advocate needs to be aware that you are on methadone maintenance treatment. You will want your advocate to have the phone number of your clinic, along with the names of your counselor and doctor. Talk to your advocate beforehand to make sure that he/she understands all your wishes and concerns.
Once you have chosen your "advocate", it is a fairly simple process to make it (hopefully) legal. All you have to do is fill out a form, usually called a "Living Will", "Health Care Proxy", or something similarly titled. This form should be available at most physicians' or lawyers' offices or in hospitals. In fact, federal law requires hospitals participating in Medicare and Medicaid to ask patients whether they have a Living Will. Depending upon the state in which you live, you will need two or more witnesses to sign and date the form, along with your signature; it may also have to be notarized. This document will include a section where you can specify personal instructions and/or limitations—these instructions are to be followed by your physician(s) and cannot be overridden by anyone, including your advocate. The Living Will includes information such as your wishes regarding being put on life support if you are in a vegetative state, whether you want life-prolonging procedures done that could artificially delay your death, etc. Some experts also advise obtaining "durable power of attorney" in addition to a Living Will to make certain everything is legal in your state (consult a lawyer about this).
The purpose of this article is not to frighten anyone. Most medical personnel are professional and will treat you properly, but many are just not educated about methadone treatment. Additionally, in the event of an emergency that results in your incapacitation, medical staff needs to know your wishes. In conclusion, these are simple steps you can take to prevent mistreatment or mistakes from being made. We suggest you look into obtaining a Living Will or at least get a medical alert card or bracelet. It is well worth the small amount of time and expense to avoid any future potential pain or discomfort.
NOTE: You can order a personalized, laminated Medical
Alert Card from DONT.
I've been guilty of being afraid that everyone knows I'm on methadone. If I am ashamed of being on methadone, then I have been defeating the very thing I am trying to fight—stigma. Last night I was rushed to the E.R. I was in pain that I never have felt before—even labor. I told the E.R. doctors, nurses, and everyone who came in contact with me or who was giving me any type of medication that I am a methadone patient, and I was treated like anyone else. (I live in a small town too; I grew up here).
What made me think about this was the gal that came to draw blood. She had a real hard time. I kept telling her "I'm sorry", and I was ashamed about her having to stick me so much, because she really was telling me she was sorry for hurting me. She asked me how long have I been clean; I told her and said I was now on methadone though I was a little ashamed to tell her.
Her reaction was this: "Hon, ashamed is when you are still using drugs. What you are doing now is saving your life and your family's." I had never really thought of it that way—of someone who never has been there. She went as far as giving me a hug and blessing me, and telling me to keep doing what I'm doing. I guess we can't tell a book by the cover either, but in reality, I think people are seeing the difference between medication [administered for treatment] and addiction.
She blew me away—I was taught a lesson last night: Never be ashamed of being clean. It hit me—I have a problem with everyone knowing I am on methadone, yet they sure as hell knew when I was shooting!
I'm not saying to stand there with a sign that says "Hey, methadone patient and proud of it"—you know when to be discreet and when not to. But actions speak louder than words: if you hold your head high, act and treat those people how you want to be treated, then that says something about patients on methadone. Not everyone will accept it, but what the hell. It takes all kinds to make this world interesting. As long as my family and friends support me, who cares?
Eventually everyone may have a friend or someone in their family
on methadone, and it's their job to educate those family and friends.
It would be a domino effect. The truth will be heard.
DONT is a 501(c)(3) Exempt Organization.The IRS has determined that Detroit Organizational Needs in Treatment (DONT) is exempt from federal income tax under the Internal Revenue Code as an organization described in section 501(c)(3). As a result, donations to DONT/Methadone Today are tax-deductible. 501(c)(3) status should make it easier for DONT to obtain grant money, as many grantors will only fund 501(c)(3) organizations. Exempt status may also allow donors' money to go further by utilizing discount bulk mailing rates for nonprofits, exempting DONT from state sales tax, etc.
Remember: DONT does not have a grant and still depends on
individual support to print Methadone Today; please consider
subscribing to MT, a DONT membership, purchasing a Medical Alert
card, and/or sending a tax-deductible donation to DONT to allow us to keep
printing Methadone Today (see p. 4).
Oh boy, I thought I had taken care of everything before the surgery. I brought information to the doctor explaining everything (Dr. Payte's Dear Doctor Letter). Editor's Note: This letter explains how to manage pain in methadone-maintained patients—clearly, her doctor either didn't read the letter or simply did not follow its recommendations. He was so responsive, I didn't give him anything else.
Well, I was given Toridol shots in the hospital, but luckily for me, I only had to stay 24 hours and the anesthesia was still in my system. The night of the surgery I was in some pretty bad pain and even the nurse said, "Toridol?" and called an attending physician. He gave me Vistaril after he was given my history. She came in with the shot of Toridol and Vistaril and asked me when did I take my methadone?
After I thought about it for 10 minutes I called her back in and asked why did she even ask that? The doctor had asked and thought if I had not taken it that might be why I was crying and upset. No, I am in Pain!!! I told her that my methadone was not for pain management and would not help me in any way that many hours later. Nothing was done but I knew I was leaving in the morning. Well, the damn doctor prescribed Toridol for me and fortunately, my insurance would not pay for them, so we called his office back. They were then going to prescribe another Nsaid, well we blew up and asked, "JUST WHAT DO THEY PRESCRIBE FOR THEIR OTHER PATIENTS!?" We were told, ‘Lortab, and others of the like.' My husband then said, "Well why don't you give her those? This is absurd; she is in pain."
Well he did give me Lortab--all 20 of them. I guarded them like a vulture, but I had to take two at a time and really could take three or four. I am so sick of all of this; I just don't feel up to fighting.
There is more—my husband called the doctor yesterday (thought it would help if he did). He told him we had seen a sign about a requirement for a 24-hour notice for prescriptions, said I was down to seven Lortab, and was concerned about the weekend. Last night, I checked my answering machine, and they had called back yesterday—I missed it somehow. So, as of this morning, I am not even sure if I will get anything else.
I am so upset over this, I can't stop crying. I am afraid to take anything this morning in case I need it more later. I will find out first thing this morning, but the way everything has gone up until now, I think I already know why they called. This is making me sick.
This procedure is not as invasive as the other two I have had, and the doctor kept saying there would be hardly any pain. Well, it is true that the pain is not as severe as before, but for God's sake, it is hurting. It was done vaginally—two bolts screwed into my pelvis, the bladder put in a sling, and tied to the bolts. It has only been four days since the surgery, and I am having some pretty strong discomfort and pain—especially by noon or later in the day. I am not asking for anything more than proper pain control. I have taken very little of the pain meds for fear of running out, and I shouldn't have to concern myself with this.
Is there something you don't like about the current treatment system? Stop laughing right now!
Seriously, maybe there is a regulation that needs changing which affects methadone patients, or you may want to let CSAT know how the new proposed regulations might affect you and other patients.
Personal letters, even if they're short and simple, are one of the best ways of influencing regulations and laws. It is easiest to start with something with which you're familiar or really worried about.
There is no time to waste (120 days from July 22, 1999 is the cutoff date). Find your pen and paper, and write a letter about it! No typewriter or computer? No problem--just try to write neatly.
Here are the points your letter should include and some ways to say them. Just "fill in the blanks" and you'll have a letter:
1. Name and address. Who are you writing to? If it's an existing state regulation, you should write to the agency that regulates the methadone system. Not sure what it's called or where it is? Look on the bulletin boards at your clinic--there's probably a poster with its name and address. The patient advocate will also know. Or ask one of the organizations that work for methadone patients. If nothing else works, get out the telephone book and the "government" listings for your state government. Call the Health Department, and tell them you're trying to locate the name and address of the state methadone authority. They can probably help.
2. What are you writing about, and do you think it would be good or bad? Include the name or number of the regulation or bill, if you possibly can. This makes sure your opinion gets to the right place. If you don't know it, you can just write "regulations that don't allow..." or "any legislation that would..."
3. Who are you, and why do you care? You can describe yourself as a methadone patient. If you don't want to do that, you can just say you're a "concerned citizen," or (to a legislator) a "resident of your district." If you're a taxpayer, or a registered voter, include that too, it shows that methadone patients are just like everyone else.
4. Why do you think it's harmful or helpful to patients? Try to stress how it affects other patients as well, so it doesn't seem like a personal complaint. Explain how it affects patients' being able to be good citizens and productive members of society: "stay in treatment," "hold a job," "care for children," "lead normal productive lives" are some ideas. Give a real-life example if you can.
5. What action do you want from the person you're writing to? Be as specific as possible.
6. Say thank you. You can also suggest that the person contact you if they want more information, if you like.
7. Your signature, name and address. You may get a response thanking you for your opinion! If you don't want to sign your name, say why. For example: "I don't want to sign my real name because too many people don't understand about methadone treatment, and I could be fired if my boss finds out."
Here's an example asking the State to review a harmful regulation:
Dear Ms. Director:
I would like you to review State Regulation 198.376 which allows only two take home doses of methadone a week. This affects me and many other patients. It is more difficult for us to work because we have to go to the clinic every morning. Please work to change this regulation in any way possible. Thank you very much.
Senator James Clueless
Dear Senator Clueless:
I'm writing in favor of Senate Bill 147.1, the Improving Methadone Treatment Act, that would provide a state-funded methadone clinic in every county. Many who want treatment would be able to actually get it. For example, I would have gone into treatment much sooner if a clinic had been closer to home. As a resident of your district and a methadone patient, I'm asking you to work to pass this bill. Thank you very much.
Say what you think, and keep it simple. Remember, letters show that someone out there cares about an issue even if they don't produce any immediate "results." Want to have even more fun? Get a few friends together, and you can have several letters to the same office at once. Any letter (even a postcard) is better than nothing. Good luck, and keep writing! Ask your friends and family to write!
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