The sensitivities of people with environmental illness, fibromyalgia, ME/CFS, and other 'invisible' illnesses become special challenges during a hospital stay, surgical procedure, or trip to the ER. The reality is that many medical providers are unfamiliar with such sensitivities or, in emergencies, are trained to deal with 'averages' rather than 'outliers'.
The following information from MCS America* provides an overview of precautions that vulnerable people - especially those with chemical sensitivities - can take to avoid unnecessary harm during visits to a hospital or ER.
(See also the attached Appendix for links to resources that will help ME/CFS, FM, and RLS patients prepare for a successful surgery experience.)
A Plan for the Worst: Preparing for Surgery and Hospitalization
Life has a way of tossing in emergencies where one must be rushed into the hospital, and perhaps surgery, without any planning or option of hand-selecting a doctor. Accidents, medical problems, and life-threatening situations creep up completely unexpected and leave little choice in the matter. When it comes to the hospital or death, the hospital wins every time.
The average emergency room (ER) physician evaluates the life and death aspects of a patient’s immediate presentation. They are taught to quickly and decisively identify and treat the most likely cause of a patient’s symptoms and test results. What happens to the patient later or throughout the rest of his/her life as a result of the treatment is of little concern.
The process by which physicians are trained is a pretty arcane one. Up until the 20th century, medicine relied solely on theoretical constructs. With the advance of science, medicine has come to rely much more on averages.
Physicians quickly diagnose and treat based on the average cause of a patient’s presentation.
However, in any average, there are outliers. Outliers are numerically distant from the average data. Simply put, they are different.
In medicine, outliers may come with an atypical presentation or atypical response to treatment. For example, a young female corporate executive of 22 presenting with chest pain, by the law of averages, is more likely to be suffering from stress and anxiety than from a heart attack because she is not of the average age when heart attacks occur. Even when such a patient voices that she has not been under stress or feeling anxious, she’s given anti-anxiety medication, told to take a vacation, and sent home. In other words, presentations which are atypical are often dismissed.
In addition, side effects of drugs and surgeries are commonly accepted in an extremely narrow view of harm/benefit ratio which compares the results favoring a specific treatment or drug vs. no intervention.
This poorly designed ratio fails to take into account quality of life issues and complications which may impact other health conditions once the emergency has passed.
It also completely fails to take into account alternatives, such as a different drug, which may be tolerated better by an individual patient.
Adding insult to injury is the alarming number of medical errors made.
In the years 2000, 2001, and 20002, an average of 195,000 people in the USA died due to potentially preventable, in-hospital medical errors, according to the Health Grades Patient Safety in American Hospitals study.
The fact is that ER doctors are trained to act fast and with confidence. They are taught not to question themselves. This becomes clear when concerns are presented by a patient over the effect of a treatment or surgery on an environmental illness, such as multiple chemical sensitivity (MCS).
The hospital is an unnerving place for many people, but it can be an especially dangerous place for people with illnesses of environmental origin when their concerns are dismissed by medical providers.
When it comes to atypical presentations or a patient asking detailed questions to assert their needs, most physicians placate the patient, manipulate their decision, or simply don’t care.
When a patient asks detailed questions or expresses concern or desire to be tested for reactions prior to anesthesia, the only issue the physician may see is the life or death part. The physician may even dismiss the patient by saying inappropriate things such as, “Well, you can have the surgery or you can die. Your choice.”
There is no reason why a patient with a history of adverse drug reactions should accept any dismissal from a physician.
It’s not an either/or choice. It’s a matter of proceeding with the most information and most choices to ensure the best outcome. In most cases, there is more than one anesthetic, more than one treatment option, and more than one way to control pain.
The patient has every right to request testing, receive more information, and give consent only when it is fully and truly informed.
Even after being admitted, most hospitals have a policy that allows a patient to refuse some or all care. This is an important right most patients are not made aware of. Of course, if it is life threatening, there is not much choice except to stay and stand strong for your needs, preferably with the assistance of a friend or loved one by your side saying the same thing to avoid being dismissed.
Because MCS is not well understood by the average doctor, it is often equated as an allergy.
Unfortunately, an allergy is not a big concern for most doctors because they figure they can administer some Benadryl or hydrocortisone and proceed. With MCS, however, this is not the case.
MCS is not an allergy; it is a reduced ability to clear toxicants. Just as poisoning won’t respond to Benadryl, neither will MCS.
Remember that even when things have been noted in the medical chart, they may not be read.
The patient may be fed unsuitable foods or administered unsuitable medications. No one knows this better than nurses. It is not unheard of for nurses, in all their knowledge, to take extreme measures when they are admitted to the hospital themselves.
Most patients with allergies are tagged with a red band or other red marker on their hospital bracelet. Even these may be easily missed if the bracelet it turned or beneath a blanket. One nurse reportedly put a large sign on her gown that read "ALLERGIES" because she knew as a nurse that medical charts are not always read by personnel.
People with MCS would do best to plan ahead for the worst case.
Call to find out whether your closest hospital has a fragrance free policy and/or protocol for treating people with MCS in place. If they don’t have a policy, work with them closely and diplomatically to develop one.
They will be more responsive if you approach them objectively and unemotionally.
• A sample of an actual fragrance free hospital policy may be found at: http://mcs-america.org/ScentFreeWorkplace.pdf.
• A sample of an actual hospital protocol for MCS patients may be found at: http://mcs-america.org/ScentFreeWorkplace.pdf.
Regardless, an emergency bag with some essentials should be kept nearby at all times.
If you drive, this could be kept in the car, since the car is always nearby. If you don’t drive, you may need a smaller bag that can be carried when you go out.
Some considerations and things that an emergency kit should include:
1. A doctor’s letter explaining medical conditions, including MCS. The letter should list all known allergies and sensitivities and clearly state that the patient may not be given foods or medications with the listed allergens and sensitizers.
Ideally, the letter should include a list of known safe medications and foods.
2. Consider that stainless steel or tygon tubing and a ceramic mask may be needed for oxygen therapy or surgery prep. Most hospitals use soft plastic, which many people with MCS react to. Some hospitals are beginning to stock these supplies when they create a hospital protocol for MCS patients. However, most do not and you should keep your own and ask your doctor to include in his/her letter what oxygen supplies may be used or should be avoided.
Supplies may be purchased through the American Environmental Health Foundation at http://www.aehf.com/home.php?cat=156.
If you react to latex or other exam gloves, consider keeping a few tolerable exam gloves on hand too.
3. Talk with your allergist or physician about being tested for biocompatibility with common medications, such as anesthetics, pain medications, and antibiotics so that you can create a list of suitable and unsuitable medications for your doctor to include in his /her letter.
Drugs, especially psychoactive and sedating type drugs, should be used sparingly. Drugs metabolized in the liver, specifically hepatotoxic drugs, should be avoided when possible.
4. Magnesium is often extremely deficient in people with MCS. If you take magnesium regularly, pack a weeks supply in your emergency kit and ask to be tested when hospitalized.
You may wish to have your doctor suggest this in his/her letter.
5. Many people with MCS are also cortisol deficient. Some take cortisol replacement medications. Since cortisol is needed in increased amounts during stress, such as surgery, ensure you have at least a week’s supply of your medication and ask your doctor to include this in his/her letter.
6. Pack an extra week’s worth of supplements and medications you normally take along with a list of your usual dosages. Be sure to rotate your supply so that it does not go past the expiration date.
7. Hospitals are notorious for bad food. After surgery, most are usually placed on a clear liquid diet. Most of the liquid juices and broths served in hospitals contain food dyes and aspartame.
Therefore, if you react to these additives, you will need to have a stash of liquid and solid foods for later that would hold in your car in all weather conditions.
Some suggestions include tolerable juices, milks/substitutes, canned foods (and can opener), broth cubes, instant soups, protein bars, dry cereal or granola, crackers, and anything that won't perish or freeze that you can keep handy if you have to go to the ER.
Generally, by the time a patient is placed on solid foods, the hospital has things like plain meats, brown rice, and vegetables which can be consumed. This is especially important for insulin-dependent diabetics because lack of food intake can lead to ketoacidosis, a dangerous medical condition which may result from burning fat stores for energy in the absence of food and will delay your release from the hospital.
8. A mask or respirator to use in the event of exposure to a scented hospital worker or routine cleaning.
9. A Medic Alert bracelet. Your doctor’s letter and records can be uploaded to Medic Alert and requested if you are admitted or need emergency care. This is especially important if you are unconscious or unable to speak for yourself.
10. Bedding and clothing, if you are unable to tolerate the linens provided by the hospital. Keep in mind that hospital gowns have snaps at the shoulder to accommodate wearing over IV lines. Hospital gowns may be purchased in advance so that they may be washed and aired to a tolerable level.
You may wish to pack several since the hospital changes sheets and gowns daily.
It may pay to take a trip to your local hospital to scope it out and determine what you would need if you were to be admitted.
Even though this would mean exposures, forewarned is forearmed. Hopefully, you will never need to go there again. But if you do, you will be glad you took the time to prepare.
One last thing to consider is having a friend or loved nearby whenever you are in the hospital or ER.
Patients who receive visitors have been shown to receive better care. Plus, having someone else to advocate and back up your statements enhances your credibility and discourages dismissal of your concerns by staff.
For more information and links to other sources for hospitalization of the MCS patient, see http://mcs-america.org/index_files/HospitalAccess.htm.
* This article is reproduced with kind permission of MCS America. It is excerpted from the January 2011 issue of the MCSA News e-newsletter (vol 6, #1, ©2011 MCS America). To access the MCS America library and sign up to receive the free newsletter, go to http://mcs-america.org/index_files/newsletterarchives.htm.
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APPENDIX: Resources for ME/CFS, FM, RLS and Post-Polio Patients Who are Facing Elective Surgery
• "Recommendations for Persons with Chronic Fatigue Syndrome (or Fibromyalgia) Who Are Anticipating Surgery," by Dr. Charles W Lapp, MD, director of the Hunter Hopkins Center for ME/CFS/FM in Charlotte, North Carolina.
• "Preparing Your Body for Surgery," by Dr. Christine Lasich, MD, a HealthCentral expert on physical medicine and rehabilitation.
• "Fibromyalgia and Surgery," by Karen Lee Richards, HealthCentral's lead ChronicPainConnection Expert on FM and ME/CFS, and co-founder of the National Fibromyalgia Assn.
• "Surgery and RLS - Special considerations for the surgical team when the patient has Restless Legs Syndrome," by the Restless Legs Syndrome Foundation.
• "Guidance for Fibromyalgia Patients Who Are Having Elective Surgery - an Update" by The Oregon Fibromyalgia Research and Treatment Team at Oregon Health & Science University, Portland.
• "Summary of Anesthesia Issues for the Post-Polio Patient" by Dr. Selma H Calmes, MD, Vice Chair UCLA School of Medicine Department of Anesthesiology.
• "Tips for Anesthetics and Hospitalization for People with Multiple Chemical Sensitivities" last revised 2003 by Susan Beck, based on her own experience as an MCS patient.
Note: This material has not been evaluated by the FDA. It is for general information purposes only and is not meant to prevent, diagnose, treat or cure any illness, condition or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.