Question from SallyS
Debra,
I have MCS and am facing a lot of medical procedures, frankly part of the dread comes from the exposure to all the toxins in the medical arena.
From the medications to all the plastic and toxic chemicals used to clean such, all the way to the beds and the food. Last year I was hospitalized and the worst thing was the smell, the humming of machinery, and the awful things that I cam in contact with such as plastic, vinyl bed, and so on. The more doctors I see the worse it gets, seeming to accumulate in my system and throwing things off – it takes some time to recuperate from each occurrence and feels like going backwards.
Have you any suggestions as to how I can better cope with such? I truly appreciate any input.
Sally
Debra’s Answer
First, I know there are some healthcare organizations who are becoming less toxic.
Kaiser Permanente is one.
There’s an organization called Health Care Without Harm that is working internationally to “transform the health sector worldwide, promoting environmental health and justice.”
You might contact them to find out which hospitals in your area might be less toxic.
Readers any suggestions from your own experience with a hospital stay?
Thank you!
Debra, the link is great, I feel hopeful.
k2 – this information is absolutely wonderful – I’m going to print it out. Yes, it is that important.
Everyone – truly, thank you for the suggestions.
The Univerity of Michigan is a fragrance free environment. They also use green cleaners and are very accommodating of MCS patients and they are one of the Top Ten Hospitals in the country.
Great comments, everyone! Sorry that I hiccuped on mine and repeated them!
As you can see, you are not alone!
Hopefully, you reported your experiences to your doctor so that s/he can support you in writing (with a copy for you, a copy for his/her chart, and another for the hospital’s chart).
If your symptoms are sufficiently serious to impair one or more major major life activities (i.e. if you are legally disabled), you are eligible for reasonable accommodations (or changes in policies, practices and procedures) as long as they would not pose an undue hardship for the hospital.
Each hospital’s patient advocates (which range from volunteers to social workers) can help too. (If nothing else, they can direct you to the heads of various departments so that you can discuss your needs well in advance of future hospitalizations and get a written plan in your chart.)
Here’s a comprehensive list of accommodations to consider.
Anesthesia: Some anesthesiologists have a reputation for being even less flexible than surgeons. Stand firm, get your doctor’s support, and move on to another if your inner voice is suspect. Get your agreement in writing and make sure that his/her backup person signs off on the written agreement as well. If neither person is available, start over. Don’t assume they will fully read, comprehend, and abide by your agreement with others.
Bedding: Consider bringing a mattress sized sheet of 6 ml. polyethylene to tuck in over the hospital’s vinyl mattress cover. Bring your own sheets (an old set that can be tossed, if necessary). Fill a pillowcase with old folded towels or blankets (again, that can be tossed after your visit, if repeated washing is insufficient to restore them).
Dietary Needs: Are they able and willing to meet your needs? Is their water filtered? Try to discretely bring some easy to eat food items with you as a back up.
Housekeeping: Specify your needs in advance (e.g. trash removal and dusting, only with a plain cloth and water and use of hydrogen peroxide or your preferred cleanser in the bathroom).
Laundry: Are they able and willing to autoclave your sheets, etc. separately? Do they do this for anyone else? (If so, will the hospital labels yours so they receive the same treatment?) Are you willing and able to trust them to do so? (Your best bet may be to bring extras from home, if at all possible.)
Nursing: Discuss your needs with the head nurse (e.g. washing hands with hot water and soap, fragrance and smoke free, compounded meds, your own bedding, special diet, etc.). Be prepared to hand him/her a letter from your doctor verifying your disability status and need for these accommodations. Ask your doctor to include some of your reactions in that letter, if necessary. Ask the head nurse how s/he wishes you to proceed if things go awry. Make sure that one of the corrective actions is offering you oxygen at no charge for you and/or your insurance company.
Pharmacy: Are they willing and able to compound meds to meet your needs (and your doctors specifications)? What is their policy about patients bringing their own meds or supplements? (Usually unfavourable, due to liability issues.) What if the patient’s meds or supplements are brought in foil blister packs marked for each day? (You can bring them to your own trusted pharmacist to have this done for a small fee.)
Physicians: After identifying and coordinating your needs with/amongst your doctors, don’t forget to confirm them in any surgical contracts. (Ignore functionaries who say you can’t make changes. Of course you can!) Do you need an alternative to Betadine? Silk stitches instead of dissolving or metal? Put them in the contract. Want to make sure that only your chosen surgeon operates, including closing you up? Put it in the contract!
Room: Ask for a private room (for free, as a reasonable accommodation based on your disability) away from elevators, lounges, nurses stations, and housekeeping closets. Ask for a steel, hospital grade air purifier that has a new replacement cartridge (and, ideally, windows that open). If necessary, ask your doctor to document the need for a room with positive pressure (usually reserved for transplant patients).
Signage: Bring a laminated sign for the room door that specifies no fragrances, hand washing with soap and water rather than antibaterials, and notes confirming your arrangement with housekeeping. Place a copy inside the room. Place a third sign re no fragrances, hand washing, and compounded medicines over your bed.
Treats: Don’t forget to bring a small container with treats (ginger, hard candies, etc.) for your room, with a note inviting hospital personnel to enjoy them. It will encourage them to come in and check on you and remind them that you’re more than the sum of your medical needs!
Finally, try to avoid a trip to the hospital in mid-July through August, when new interns descend! If that’s unavoidable, consider inviting them to look but not touch, given the complexity of your condition. (Sounds harsh, but if your reactions are life threatening, it may be a necessity.)
Good luck!
Here’s a comprehensive list of accommodations that are typically needed. I’m trusting others will continue to chime in with more tips.
Anesthesia: Some anesthesiologists have a reputation for being even less flexible than surgeons. Stand firm, get your doctor’s support, and move on to another if your inner voice is suspect. Get your agreement in writing and make sure that his/her backup person signs off on the written agreement as well. If neither person is available, start over. Don’t assume they will fully read, comprehend, and abide by your agreement with others.
Bedding: Consider bringing a mattress sized sheet of 6 ml. polyethylene to tuck in over the hospital’s vinyl mattress cover. Bring your own sheets (an old set that can be tossed, if necessary). Fill a pillowcase with old folded towels or blankets (again, that can be tossed after your visit, if washing if insufficient to restore them).
Dietary Needs: Are they able and willing to meet your needs? Is their water filtered? Try to discretely bring some easy to eat food items with you as a back up.
Housekeeping Specify your needs in advance (e.g. trash removal and dusting, only with a plain cloth and water, and use hydrogen peroxide used in the bathroom). Bring another laminated sign for over your bed that reinforces your needs (e.g. no fragrance, hand washing, compounded meds, and diet.)
Laundry: Are they able and willing to autoclave your sheets, etc. separately? Do they do this for anyone else? (If so, will the hospital labels yours so they receive the same treatment?) Are you willing and able to trust them to do so? (Your best bet may be to bring extras from home, if at all possible.)
Nursing: Discuss your needs with the head nurse (e.g. washing hands with hot water and soap, fragrance and smoke free, compounded meds, your own bedding, special diet, etc.). Be prepared to hand him/her a letter from your doctor verifyng your disability status and need for these accommodations. Ask your doctor to include some of your reactions in that letter, if necessary. Ask how s/he wishes you to proceed if things go awry. Make sure that one of the corrective actions is offering you oxygen at no charge for you and/or your insurance company.
Pharmacy: Are they willing and able to compound meds to meet your needs (and your doctors specifications)? What is their policy about patents bringing their own meds or supplements? (Usually unfavourable, due to liability issues.) What if the patient’s meds or supplements are brought in foil blister packs marked for each day? (You can bring them to your own trusted pharmacist to have this done for a small fee.)
Physicians: After identifying and coordinating your needs with/amongst your doctors, don’t forget to confirm them in any surgical contracts. (Ignore functionaries who say you can’t make changes. Of course you can!) Do you need an alternative to Betadine? Silk stitches instead of dissolving or metal? Put them in the contract. Want to make sure that only your chosen surgeon operates, including closing you up? Put it in the contract!
Room: Ask for a private room (for free, as a reasonable accommodation based on your disability) away from elevators, lounges, nurses stations, and housekeeping closets, with a steel, hospital grade air purifier that has a new replacement cartridge (and ideally, windows that open). If necessary, ask your doctor to document the need for a room with positive pressure (usually reserved for transplant patients).
Signage: Bring a laminated sign for the room door that specifies no fragrances, hand washing with soap and water rather than antibaterials, and notes confirming your arrangement with housekeeping. Place a copy inside the room. Place a third sign re no fragrances, hand washing, and compounded medicines over your bed.
Treats: Don’t forget to bring a small container with treats (hard candies, etc.) for your bedside table with a note inviting hospital personnel to enjoy them. It will help everyone to realize that while you may inhabit a high maintenance body, you’re very thoughtful!
Finally, try to avoid a trip to the hospital in mid-July through August, when new interns descend! If that’s unavoidable, consider inviting them to look but not touch, given the complexity of your condition. (Sounds harsh, but if your reactions are life threatening, it’s a necessity.)
Good luck!
(Please forgive the length of this post. The topic is THAT important!)
I was in the hospital twice in 2012 for breast cancer surgery. I told all my nurses that I was allergic to cologne etc right off the bat and they posted that on my door. I took my own sheets and a blanket. The y use bleach in everything. Scrathes my skin and makes me itch. The full size older sheets I have were fine. They did not fit tight but I made it through. I took my own pillow cases also. I packed in my overnight bag my cetiphil soap and creme. That is all I can use. I also took my alovera gel in case I got a rash. I took my own nightgown that I cut down the back for axcess. They did n ot like that idea but let me use it. My own toothpaste etc. I also took my own washclothes and a towel. I put all that in a plastic bag when I left and washed it when I came home. I took several masks with me. One of the cone style and over the ear loopers type. I had a nurse with cologne on and I needed it although there was a sign posted not to wear it. She said it was hand lotion not cologne…ok. Scent is scent. After I told the head nurse she could not come in my room again. I washed my hair before I went in and took a bandana with me to keep on so I did not have to worry about my hair. I can not think of much else but that worked for me.
My local (not-for-profit) hospital allows me to put a sign on the door, telling housekeeping staff to use only water (or vinegar, etc., if available) to clean floors, bathrooms, etc. This is a big help, & I’ve found the housekeepers are excellent at adhering to my request.
They also use unscented laundry products, but I bring my own pillow, thus avoiding the plastic in the hospital’s pillow.
This hospital has an unscented policy for all personnel, medical, clerical, housekeeping, etc., as well.
We ask that no hand sanitizer be used in room. We cover the dispenser with a sign & tape. Nurses wash their hands before entering. We have a do not enter room if wearing any fragrance sign on the door. If anyone has a fragrance for instance a nurse had just used hand lotion, we ask that they go wash it off. Make sure all your allergies are in your chart. Insist on a private room for health reasons. Be firm, have your family advocate for you also. Bestt wishes.