HOME FROM THE HOSPITAL
IRRIGATION AND HUMIDIFICATION (from UAB Otolaryngology Dept.)
Let’s talk about your ‘air conditioning’ system. Before your laryngectomy you were breathing through your mouth and more importantly through your nose. Your inspired air was being filtered and humidified by your upper respiratory tract. Inspired air was taken from the relative humidity of your ambient air and moisturized up to 100% by the time it reached the gas exchange units in your lungs, called alveoli. At the same time, particulate matter was removed by the mucous blanket, which coats the lining of the nose and throat.
After your laryngectomy, you are left without this normal filtration/humidifying system. Your lungs respond in a very normal and protective manner by producing an increased amount of mucous to filter and humidify the air that is coming in. Bloody sputum can result when you cough excessively to clear this increased amount of mucous. You also may be more susceptible to bronchitis (an infection and inflammation of the lining tissues of the tracheo-bronchial tree) because you are breathing unfiltered, dehumidified air.
So, what to do? Everything possible to increase the amount of moisture in the air you inhale. Irrigate your stoma with clean tap water or saline solution four times a day and it will help your breathing. You will be taught how to do this in the hospital, but it is very simple. Fill a syringe with two to three cc’s of water, take a deep breath and squirt some of the water into your stoma. You will cough and you are supposed to. If you cough before you get much water into the stoma, repeat immediately. You are softening any bits of hardened mucous or blood and coughing it out. This is extremely important.
A cool mist humidifier in your bedroom will help you to breathe moist air while sleeping. Put fresh water in daily, and every week or two, to prevent bacteria, clean and soak the tank with a solution of one teaspoon of bleach in one gallon of water. Rinse thoroughly before refilling.
Some tricks for retaining warmth and humidity in your trachea and lungs include wearing a stoma bib, but you can also wear a scarf, a turtle neck shirt or sweater. Foam stoma protectors are also available. Covering your stoma allows you to conserve the moisture that is trying to leave your lungs as you exhale. You might also wear a soft stoma vent (see your MD for the proper size). A small plastic spray bottle filled with clean tap water can be used to create a mist to dampen your stoma bib. It becomes a portable humidifier.
Lastly, be patient. Your lungs are going through some major changes. Ultimately, they will adapt to the new you. Things generally improve within 3 to 4 months after surgery.
Ginny Huffman, Chair of a Jacksonville, Florida support group visits the Mayo Lary patients before they leave the hospital. Because many come from far away and some have no computer, she gives them the following list and we asked permission to list it on the web for the use of all of our readers :
Ginny’s List of Meds & Helpful Hints
Post Surgery For Pain & Meds
Hydrocodone, RX required.
Biofreeze roll-on for neck discomfort. Available on internet: http://www.biofreeze.com/
I have a massage every two weeks. Tried acupuncture but this works as well for me. My massage therapist is an RN but you need a specialist if you have special problems.
Paxil for depression, RX required. Depression is common with larys. I didn’t realize I was depressed but felt much better after using the med. I had no difficulty weaning off it.
Saline Bullets, RX required. Pharmacy name is Sodium Chloride Inhalation Solution 0.9% and it can be purchased in other packaging.
Synthroid, Rx required. Used for thyroid complications, diagnosed with special blood test. It increased my energy level.
I have mounted to my shower wall an adjustable slide bar with a shower faucet that can be set at any height. It has three spray settings and detaches as a hand held faucet also. I stand with my back to the spray and put my head back like a salon shampoo. Delta makes my faucet but there are others. I don’t cover my stoma but you can use a foam filter or wash cloth until you’re comfortable with it.
There are many ideas and shower caps for showering under http://webwhispers.org/library/EverydayLiving.asp
For Dry Mouth
Med Active Oral Relief Spray ,Internet Search
Toothette Mouth Moisturizer Sage, Internet Search.
Colgate Prevident 5000 plus 1.1% floride
Biotene Dry Mouth Wash
For Weight Gain
ScandiShake: Look in Internet Search.
I add beneprotein to the scandi powder. I tried Ensure, Boost, etc. This has 600 calories per serving and you can add ice cream, fruit, etc. Tastes much better. I mix with whole milk. It comes lactose free also and in several flavors. If you telephone an order, Scandi Shake will mail you a booklet of recipes. Larys also can order it through their pharmacy and avoid shipping charges.
For Yeast Problems
I began with Nystatin, RX required. It works well for most larys.
Mycelex tablets, RX required, are another option if the problem is severe.
I also use Acidophilus, a probiotic, available at the drugstore. I chew two daily but it comes in a non chewable tablet. Two billion organisms is recommended. Yogurt contains acidophilus.
It would not hurt to remember your mother’s advice: “ drink a glass of prune juice daily!!”
I urge all larys to use WebWhispers.org. It is free to access the web site. The best information about our condition and issues is found there. I have used many of the vendors listed on this site over the years and have had no significant problems. Just go to WebWhispers Suppliers List
I use a Personal Security Alarm. It fits in the Palm of your hand and when you pull the pin, it makes a really loud noise for help! Manufactured by GE model # GESECPA1
A Personal Note
I hope that any lary with suggestions for other products will let me know. This list answers some of the immediate concerns of the new larys I visit in the hospital as well as problems that develop later.
Most health insurance covers an electrolarynx, prescribed by your doctor after a laryngectomy, and it is important to obtain one and learn to speak with it as soon as possible. You can learn to speak very well with one of these instruments and the more you practice, the better you speak. Shortly after surgery, you start with one that has an oral adapter because of swelling under and around the neck. Later, you may use it without the oral adapter under the chin or against the side of the neck. Hopefully, you will have a SLP (Speech Language Pathologist) who will help you make the most out of your electrolarynx. Don't be discouraged. It takes time and practice, but it is an excellent method of communication.
If purchasing one is not possible, contact your local support group or ACS (American Cancer Society) and see if they have "loaners" available. Some of our members feel that borrowing one before the surgery and practicing with it makes the transition easier.
If you don't already have an answering machine, you will find that it is important to be able to receive messages, but using it to screen calls may be even more helpful. Even if you can speak some with the help of an electrolarynx, you may want to answer only when family and friends call but avoid having to go through an explanation to strangers or to fool with sales calls. The telephone company service, Caller ID, could help with knowing who is calling, but doesn't serve as many purposes for us as a simple answering machine.
A lary's daughter came up with the idea of purchasing a digital pager and service through a local company so the new laryngectomee could call his wife's pager number with a coded message. They devised a code for him to put into the page rather than the telephone number. #1 was that he was OK - #2 was for the wife to call him when she got a chance (no emergency) - #3 was for her to get in touch with a neighbor or his father to come to see what he needed (kind of emergency) and #911 was for the wife to get help immediately. They had a few other codes - but they were just for information. This gave the family a sense of security that he would have help if needed. Most of the messages were #1, but a good system was in place and it brought peace of mind.
It is frustrating to need help with something that is not an emergency and not be able to raise your voice and call to someone, so most of us found different kinds of noise makers or ways to attract attention. A bell, bicycle horn, party noisemaker toy, inexpensive 2-way radio to signal, or anything you can find that will work for you. For loud outside noise makers, see Activities.
I bought a card of cheap whistles the other day at a party store, ($3.98 for 6), used some plastic cups, about two inches in diameter and one inch deep, that come as the containers in the drink mix, Crystal Lite, (no cost ... they are throw away items. A medicine cup might do depending on the size.) Cut a slot in the bottom to fit the mouthpiece of the whistle. Tape will seal the small openings around where the mouthpiece is inserted but a hot melt glue gun will drip a permanent seal around it. This should be washable.
You can now put cup to stoma and blow the whistle. You can put one in the car, one in your purse or pocket or hang it around your neck. Better whistles can be fixed when you need something very powerful (look under Activities) but the cheapies work for in the house or yard when you need to get someone's attention and they are not loud enough to scare the neighbors. Good as gifts to new larys.
HANDY WRITING TOOL
Although I use TEP now, when I first had my surgery I used EL and for several weeks was not very good at it because of the swelling. I carried a small magic writer in my pocket, a child's toy that I could write on, erase by lifting the transparent cover, and write on again. I used it for ordering in restaurants and whenever I needed to communicate and was having difficulty. I still pick one up at the local Toys 'R' Us or dime store whenever I visit a new patient. I found it to be essential in the hospital post op to communicate with family and friends as well as the hospital staff.
My husband and I have purchased "Talk Abouts". They are like a child's walkie-talkie only more advanced and have farther range. We not only use them in our home, but when we are out, if I need help and he isn't close to me, I can reach him at anytime. They are extremely clear. The price starts about $69.00 and goes up according to what range you want to have. They can be purchased at places like ABC warehouse, Montgomery Wards, Sears ... maybe Radio Shack ... these stores are pretty much nation wide.
It is especially important that we check the batteries in our smoke detectors since our sense of smell has been compromised and we may miss the smell of smoke. If we live alone or even spend any significant amount of time by ourselves we need to take particular care that the detectors are operational. The batteries should be replaced at least twice a year, and checked more often. Checking them typically involves verifying that a light is on, or pressing a button which should cause the alarm to sound. One way to remember to change the batteries is to use the occasion of turning our clocks forward one hour in the Spring, and back again in the Fall, as a reminder. One of the side effects of the laryngectomy is partial loss of the sense of smell, making a smoke detector a must. Check the batteries on schedule.
Actually you may want to get more than one, particularly for use during the winter or when the relative humidity is very low. One caution is to be careful not to place a humidifier in close proximity to a computer.
HUMIDIFICATION AND IRRIGATION
(These are the instructions sent home with new laryngectomees from UAB Hospital)
Use a cool mist humidifier by your bedside. Clean it regularly.
Wear a stoma cover to hold in the moisture being lost as you breathe.
A dampened stoma cover will add moisture to the air you breathe and can be kept damp with a small spray bottle of water.
Irrigation: squirting water or saline solution into the stoma.
Schedule: 4 times a day or as often as needed
Quantity: 2 or 3 ccs each irrigation, can be repeated several times
Applicator: any size needle-less syringe or pipette (pipet)
TEP prosthesis irrigation: pipettes are made in a size that fit directly into the base of the prosthesis. One inch or more of the tip of the pipette can be cut off and inserted into the end of a syringe. This provides the tip that fits into the prosthesis and a supply of water from the syringe can be used to flush through the prosthesis for cleaning in place.
RIGGING A HOSE TO YOUR OWN HUMIDIFIER
The tubing that the hospital uses to attach to their humidifier is disposable and you can take it home with you. If you ask nicely, they might send a new one home with you in a package. I used this to convert my inexpensive home humidifier for a moisture treatment whenever I felt I needed it. All I had to do was dream up a connector.
I used the cool air humidifier from the drug store, which had a removable nozzle that tapered to an elongated shape. I removed that and it left an open round hole in the tank. The hole was about 2 1/2 inches in diameter. My connector was a clear plastic water bottle that had a 2 1/4 inch base. Any soda or regular thin plastic bottle will do. Just find the right size for your humidifier. I cut off the bottom and it fit nicely into the hole. I then cut the part off just under the screw-on cap and trimmed it until the end of the hose fit into the soft plastic top of the water bottle. I just played with it till it fit, trimmed a little on both of them. If you leak a little moist air around the seams of your new connector, it doesn't matter. It works fine.
Some laryngectomees invest in the purchase of an air purification system, especially if they have pets. Depending on the size of your living space, you can use one large unit, or purchase several smaller ones for use in different rooms. You might just prefer one in the room where you spend the most time.
Any lary needing a respiratory aerosol spray of any type should ask their Dr. about an aero-chamber. Drs. routinely receive them as samples and will likely provide one at no cost. An aero chamber is a plastic tube with a trach mask on one end and an opening on the other to receive the aerosol dispenser and disperses the medication more effectively. Mine was prescribed by a pulmonologist for emphysema.
STAY AWAY FROM AEROSOLS
Try to eliminate aerosol sprays from the house. Remember you are breathing directly into your lungs without the normal filtering system. If hair spray stiffens your hair, imagine what it does to your lungs! Try a stick, rather than a spray deodorant. Don't use aerosol air fresheners or aerosol cleaning products and avoid strong smelling products of any kind.
BEING ON OXYGEN
What is a normal blood oxygen level?
Oxygen levels are commonly measured by two techniques. The first is a blood gas in which a blood sample is taken directly from an artery. This is the most accurate assessment of oxygen. The normal oxygen level using this technique is 80-100 (mmHg). The second technique is bloodless [and painless] and is called pulse oximetry. The result here is not a direct measurement of oxygen but rather represents the percentage of hemoglobin that is saturated with oxygen. Hemoglobin is a protein in the blood that carries oxygen to the tissues. A light sensor is used which is commonly placed on a fingertip. Pulse oximetry is not as accurate as a blood gas and can be influenced by temperature and circulation. The normal oxygen saturation is 95-100%.
Thank you to Breathing Better, Living Well for this information. More information can be found on their website at: http://breathingbetterlivingwell.com/basics/oxygenqa.php
As a laryngectomy we have special needs in the use of oxygen. A pediatric mask works well to fit under the neck to provide oxygen. Another option if you use an HME is one with a built in port for oxygen. These are available from Boston Medical at the following site:
More information on Boston Medical can be found in our supplier section:
An issue just came up with one of our group, when she had to be transported via aid car to the hospital. They did not have a trach mask nor an adapter to connect the oxygen tubing to a mask. They had to get one through the repertory department at the hospital but of course that was way after the need. I did some research and found they can be ordered on line. It is a trach mask with the oxygen adapter included available at Walgreens on line order (only) for $2.99 each. Here is a link to the information:
It might be worth having one on hand in case of emergencies.
2010 Seattle, WA.
If you have questions about your own oxygen needs, your doctor should be your guide.
Using Nebulizer with a Stoma
How to Use a Nebulizer – And Other Pulmonary Solutions
One of the challenges of being a laryngectomee is how to do things like use a nebulizer, and inhaler, to promote better pulmonary health, and we often get questions about how to take a pulmonary function test (PFT). I recently had a PFT and in the process (with a little experimentation) learned a few things that might be helpful to some of you.
My primary concern was how to effectively use the nebulizer so let’s start with that.
At first I was given a pediatric mask to go over my stoma, which was hooked up to the nebulizer. While this worked there was also quite a bit of leakage around the edges so it was replaced with a trach mask. That was big improvement with less leakage but for the best results you need a direct, sealed shot into your stoma. Something like a face breather taking the medication directly into the mouth, but actually better since in our case the medication doesn’t have to travel through the mouth and throat before it reaches the trachea.
There are basically 3 ways to get a direct shot into the trachea although other variations may be possible.
1. A nebulizer can be connected directly to a lary button/tube like the Barton Mayo or the Atos Lary Button if you have a Hudson RCI, Multi-Adapter (H1422) as pictured in the illustration. You can purchase these at numerous places for about $2.50 with an internet search. I got mine at www.DirectHomeMedical.com. One end of the connector goes into the flex hose of the nebulizer kit, and the other plugs into the lary button/tube. (See Pictures below)
2. If you use an HME base plate then you can also plug the adapter into them just like above. In my case the base plate works a lot better because the connector sits deeper into it than with the lary button/tube. The base plate holds it more firmly whereas with the button or tube you have to hold it perfectly in place or it will slip out.
3. The third option, which I haven’t tried, is a special HME that has an oxygen port built into the side of it. In this case you don’t need the flex hose or the adapter. You use a trach mask set-up and plug the oxygen tube directly into the HME port. These special HMEs can be found at www.trachs.com.
Trach Mask Configuration
Base Plate/Stoma Button-Tube Configuration
This last picture is a Symbicort inhaler that is plugged into an extender, then the Hudson adapter is plugged into the extender, and then a baby bottle nipple with the tip cut off, is attached to the end. The nipple is then inserted into the stoma and you spray whatever medication you use into the extender. Some medica-tions work best when the spray has a chance to “mist” before it reaches the trachea, so the extender allows space for it to mist. The above set-up does a great job of this but it had to be modified a bit, and there are many types of extenders out there that this may not work with. So this is just something to help you visualize what may work in your case.
Finally, we get back to the elusive Pulmonary Function Test that many of you have been told can’t be done on a laryngectomee, or that the respiratory specialist doesn’t know how to do it. But rather than me trying to ex-plain it all I will refer you to a great video made by our own Bill Cross that shows you how to do it. So watch the video at https://www.youtube.com/watch?v=5KzuMLB6WrA, then order yourself a Hudson Adapter, get a base plate or stoma button, and educate your respiratory specialist if you ever need to do the test.
NECK BREATHER MEDICAL BRACELET
A stainless steel bracelet is available that will let anyone know you are a Neck Breather. Cost is about $9.00 from Luminaud..
Residents in Canada and the US have another alternative and that is to order a MedicAlert bracelet. MedicAlert provides a 24-hour toll-free emergency hotline which allows health care professionals and emergency workers instant access to your medical conditions, medication, allergies, special needs, personal requests, physician phone numbers and emergency contacts. Medical information can be updated and changed at any time free of charge. The cost is $35 for bracelet and first year, $15 per year after first year.
MEDICAL HISTORY BRACELET
The World’s First Computer Ready Medical History Bracelet. It comes with software so you can fill in your medical history easily. Responder can read your history through their computer.
You can buy through the website ($19.99 plus $5 shipping) or through local distributors, health care suppliers or drug stores and they are also handled by Target, CVS and Walgreens. Key Chain fobs available for $24.99.
Read more on their website:
NOTIFY YOUR "911" DISPATCHER OF YOUR "CONDITION"
It may well be a good idea to contact your local "911" dispatcher's office about your "condition", so that they are prepared to act if and when you call.
LET GRAVITY WORK FOR YOU
When the larynx is removed, so is the sphincter at the top of the esophagus so it is not a good idea to bend over after eating or drinking. This is particularly true in the early days following the operation. If you raise the head of your bed, you will let gravity work for you at night to keep the acids in your stomach where they belong.
Because of additional surgery, I am having to leave the drains in for a while. My daughter, Jane, made Kangaroo pouches , large sown on pockets on some t-shirts to hold the drain bulbs - pretty neat idea from an 11 yr old and really very comfortable when moving around.
TAKING A SHOWER
In the laryngectomee supply catalogs, you will find several varieties of shower guards that fit around your neck and have a half cone shape over the stoma area. This protects the stoma area from the direct blast of the shower. A few drops of water splashed in the stoma will not hurt you, but you will be more comfortable with a shield. Later, you may not need it. With a well healed stoma, you can take a breath, put your finger or thumb over the stoma and step into the stream of the shower long enough to rinse your face.
HAND HELD SHOWER HEAD
One of the hand held replacements for your regular shower head will make it easier to direct the flow of the water around and away from the stoma.
Most of us find that the better the attitude, the faster the recovery. Apply yourself to learning the new ways of living and keep your spirits up.
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