Winterizing our Stomas

    Poet T. S. Eliot began his classic poem "The Waste Land" with the line, "April is the cruelest month."  But many laryngectomees would nominate one of the winter months as tougher on us.  The reason is all of that cold and dry air.

    Colder air cannot hold as much moisture, so both the outdoor and indoor air tends to be drier during the winter.  In addition to furnaces drying out indoor air, most people set the indoor temperature approximately ten degrees cooler in winter than in summer.  We have also learned that our breathing system works best with air which is at 100% relative humidity and about body temperature, 98 degrees Fahrenheit (27 degrees Celsius).

    So the cooler and drier air of winter is likely to produce that tight feeling in the stoma area, increased mucus production as our system tries to protect the linings of our tracheas and lungs from drying out by producing more, and cracking and even some bleeding in our tracheas and the bronchial passages within our lungs.

    Many laryngectomees cope with winter by running a portable humidifier indoors or making sure the humidifier attached to a furnace is operating properly.     Monitoring indoor humidity can also be done with a fairly inexpensive gauge (see http://www.webwhispers.org/news/dec2000.htm).  But increasing the humidity past 55% is unhealthy, so many laryngectomees also increase humidity at the stoma level by either dampening a cloth or foam stoma cover, or wearing an HME (heat/moisture exchange) filter which works by retaining moisture in the lungs from escaping via exhaled air.

    But coping with the humidity issue is just half of the problem.  What about the temperature of air as we venture into the great outdoors?  WebWhispers member Margo Ziegler, who knows something about winters since she lives in Minnesota, offers this tip:

Bed Buddy
by Margo Ziegler

    I am not a laryngectomee, but do have a trach and have some similar stoma problems that laryngectomees have.  One is the problem of being out in the cold weather.  And, because I have muscle spasms in my neck, the cold air really affects my being able to breathe in the cold.  A friend of mine made a suggestion which I tried over the weekend and I want to pass it along in case it might benefit someone out there.

    I heated up my BedBuddy (a device I normally wear around my neck for neck ache) in the microwave.  I then wrapped it around my neck with the warm part just under my trach.  I then wrapped a large winter scarf in place to hold it in position.  Then I put on my regular winter gear and was able to be outside in the cold (temp. 27) for 25 minutes!

    I never have been able to do that since my trach was put in back in 1996.  The longest I was able to be outside at that temp. was for about 10 minutes and my spasms would start up and close off air.  I know the extra 15 minutes may not seem like much, but it was great for me to last that long outside playing with my dog.

    It was a GREAT help to me and possibly will be for someone out there.  BedBuddies are sold all over.  They are like a bean bag type thing for wrapping around various parts of your body.  Good luck and I hope this might help someone who suffers from the cold air like I do.

    Margo can be reached at blackeyedsusan46@hotmail.com

Radiation and Fatigue - In Brief

"Q: I am going to start radiation next week. What should I expect, and what can I do to decrease the fatigue?

    A: Fatigue related to radiation treatments usually starts about the 2nd or 3rd week of treatment, and may continue for up to 3 months or longer afterwards.  It is important to take good care of yourself.  This means eating a well balanced diet, drinking lots of fluid, sleeping well at night, and doing exercise as tolerated, such as walking regularly.  Once you start feeling fatigued, then you should match your activity to how you feel.  You should identify the activities or tasks that you have to do, and ask someone else to do the other tasks." (From http://www.cancersource.com).

IAL 2003 Meeting Set for Atlanta

    Like to plan ahead?  If so, you might want to mark your calendars for June of 2003.  The Voice Institute begins on June 24th, with the AM beginning on the 26th.  Both conclude on June 28th.

    A local joke is that if you go to heaven you will first have to change planes in Atlanta.  But since Atlanta is a major airline hub outstanding airfares should be available for those who will fly in.

    The headquarters hotel is the Sheraton Colony Square in the heart of downtown Atlanta.  The Greater Atlanta VoiceMasters club is the host group, and with all of the talented people in this club it is a guarantee that the convention will be an outstanding one.

Laryngectomees Lose Two Pioneers - Paul Schriffignano and Elsie McQueen Chapman

    The laryngectomee community recently lost two of our pioneers, Paul Schriffignano of New Jersey, and Elsie McQueen Chapman, longtime resident of San Francisco, but living in Arizona at the time of her death.

    Paul Schriffignano became the second Executive Secretary of the International Association of Laryngectomees in 1976 following the retirement of Jack Ranney.  The title was changed to Executive Director in 1986, and Paul served in that capacity for several more years.  At the time of his laryngectomy, Paul was a police captain.

    Elsie McQueen Chapman worked with Hazel Waldron, Teckla Tibbs, and Mrs. I. E. Tenholder in establishing the first IAL fashion show which was held at the 1963 IAL Annual Meeting.  In later years it evolved into the IAL "Fun Show," which continues today.  She was also an outstanding esophageal speech teacher and served in this capacity to laryngectomee, and now SLP, Joanne Fenn, who had become a laryngectomee at age three.

    Both Paul and Elsie lived into their eighth decades of life and contributed much to the cause of laryngectomee rehabilitation.

Total Laryngectomee Rehabilitation and HMEs

    For decades, the concept of "total laryngectomee rehabilitation" has been the dominant ideal and goal for laryngectomees in the U.S. and elsewhere in the world.  Additionally, there is evidence that some form of the concept has existed for as long as people have survived the surgical removal of their larynges.  It is the clear focus of organizations like the International Association of Laryngectomees and can be seen in the IAL Bylaws:

    "Each member organization shall cooperate with quasi-medical agencies and organizations whether they be public, private or government, if they are able to assist in the total rehabilitation of laryngectomees."  (Article IV, Section C, Number 6.)

    "To explore programs and projects designed to improve communication skills and lead to the total rehabilitation of laryngectomees."  (Article VIII, Section A, Subsection 6, Rehabilitation Committee, Part a.)

    "Total laryngectomee rehabilitation" (TLR) seeks to return laryngectomees to as much of the lives they enjoyed before losing their larynges as is possible for each individual. Voice restoration has been a primary focus, but psychological, social and vocational rehabilitation have also been themes linked with the TLR concept.

    Two other goals have been less prominent in the United States than in Europe, and these are the restoration of the ability to smell and improved breathing function.  While the U.S. has been a pioneer in voice restoration through the development and refinement of artificial larynges and the TEP (tracheo-esophageal puncture) prosthesis, it has lagged behind developed countries in these two areas.  And it is to respiratory rehabilitation that HME (heat/moisture exchange) filters have been designed to address.

HMEs

    Heat/Moisture Exchange (HME) filters are a type of stoma cover which help laryngectomees partially restore functions previously performed by our noses and upper airways.  They might be thought of as "artificial noses."  As the name implies, an “exchange” of heat and moisture occurs in the HME filter as a laryngectomee inhales and exhales.  During exhalation, warmth and humidity are conveyed from the lungs and deposited into the filter.  During inhalation, the warmth and moisture are picked back up by incoming air and returned to the lungs.

    HMEs are receiving more attention in the U.S. as the results of research which has been conducted in several European countries becomes more widely known, and certainly because they are now covered by Medicare.

    Before the laryngectomy, the upper half of the breathing system filtered, humidified and warmed incoming air.  It also provided resistance so that the lungs fully inflated.  This helped maintain lung capacity, and facilitated an efficient exchange of gasses in the lungs (oxygen added to the blood stream and carbon dioxide removed).  Prior to the laryngectomy, by the time the inhaled air reached the lungs it was saturated with moisture and its temperature was close to the body temperature of 98 degrees Fahrenheit (37 Celsius).  Air at 100% relative humidity and 98 degrees is ideal for oxygen/carbon dioxide gas exchange.  After the laryngectomy, the incoming air was dirtier, drier and cooler.

    The resistance function of the nose and upper airway might be a little more difficult to understand than dirtier, drier and cooler air and the problems those produce for laryngectomees.

    Prior to the laryngectomy, the nose provided 80% of the resistance to breathing; with the mouth, larynx and trachea providing the rest.  By providing resistance the lungs had to move air a further distance, and past curved and sticky mucus covered surfaces which resisted the air flow.  This consequently made us "work" harder to breathe.  We had to breathe more deeply to move the amount of air we needed.  This helped maintain lung capacity (the volume of air our lungs could hold), and the efficiency of the gas exchange in the lungs where oxygen is added to the blood stream and carbon dioxide is removed.  The quantity of oxygen in the blood of laryngectomees is measurably reduced if they do not compensate for the loss of resistance.  And our breathing efficiency typically declines, particularly in the months immediately following the surgery.

    All laryngectomees can use an HME regardless of their method of speech.  There are basically two different types of HMEs, and two major ways to attach them to the stoma.  One HME type is designed for TEP prosthesis speakers who cover their stomas (occlude) with a finger or thumb in order to speak.  This same type filter can be used by traditional esophageal speakers or those who use ALs (artificial larynges).  It consists of a housing and a filter.

    A second type of HME is for TEP prosthesis speakers.  It combines the HME filter with a hands-free valve.  The hands-free valve closes when the TEP prosthesis user exhales, and air is redirected into the prosthesis without having to cover the stoma with a finger or thumb (hence the term “hands-free”).

    There are two basic ways to attach an HME or HME/hands-free valve combination.  In one, the housing is glued to the skin around the stoma, and the HME snaps into the circular hole in middle of the housing.

    Some systems have reusable housings and the user applies the glue in liquid form to the housing and then lets it dry.  Other housings are pre-glued and are disposable after using them for a day or two.

    In either case, the skin surface around the stoma is first cleaned in order to get good adhesion.  Many use rubbing alcohol for this purpose.  Some of those with sensitive skin also use a product such as “Skin Prep” or “Skin Shield” as a barrier between their skin and the housing glue.  Several suppliers have pre-glued disposable housings which use special formula glue for those with sensitive skin.

    A second method for using an HME filter is to combine it with a laryngectomee tube (vent, button).  Two laryngectomee tubes/vents/buttons which are designed to accommodate an HME filter are the Lary Tube from ATOS, and the Barton-Mayo Button from Bivona and InHealth.  The Trachi-Naze Plus system combines a lary tube with a finger occluded HME. Both the ATOS Provox filter cassette HME and the InHealth Blom-Singer HME fit into these tubes.  (See "Hands-Free/Glue-Free" article in the October 2000 issue of the WWJ for more details about using the hands-free valve with the Lary Tube or the Barton-Mayo Button - http://www.webwhispers.org/news/oct2000.htm).

    In addition to helping maintain the cleanliness, temperature, humidity and resistance to the air we breathe, HMEs have other benefits.  In addition to mucus reduction, another of the most important of these is that many laryngectomees who speak via the TEP (tracheo-esophageal puncture) prosthesis report that their voicing is improved through the use of the finger occluded HME or the hands-free valve/HME combination.  In the case of the finger occluded ones, it takes less pressure to get a good seal around the stoma to get a good and loud enough voice, and less pressure is applied to the entire area.  This often results in speech being easier to produce as well as more clear to your listener.

    Heat/moisture exchange filters (MHEs) need to be tried for a period of time.  Using them continuously for at least one week is the minimum time they should be tried.  The reason is that unless you just had your laryngectomy, you have gotten used to the lack of resistance to air moving in and out of your stoma.  You may find the initial experience a little unpleasant and feel that the HME is restricting airflow.  It is, but in beneficial ways.  It takes time to get past this sensation and for you to adjust to it.

    But in addition to this feeling, it also takes time for the HMEs to demonstrate some of their most important benefits such as reduced coughing and mucus production.  And these benefits are unlikely to become obvious to you for a week, or even longer.  A major mistake would be to try them for a day or less and conclude that they restrict your airflow.  Research has shown that laryngectomees are more likely to stick with the use of HMEs if they are introduced right after the laryngectomy.  The longer we go without using anything which provides resistance the more difficult it becomes to stick with them.  We have simply gotten used to less restricted airflow and the sensation of having to work harder to get air is felt by many to be uncomfortable until they have adjusted to it.

    Those with breathing problems such as COPD (Chronic Obstructive Pulmonary Disease), emphysema, asthma, etc., should not try an HME without approval from your MD.  But trying them has been made easy since the three major HME producers will send you a free sample kit of their HMEs (but not the hands-free valve/HME combinations) upon request.

    If you wish to try them, you might consider trying those which have the least resistance first, and then move to those with greater resistance.  This would suggest trying the Blom-Singer (or ATOS HiFlo cassette) first, and then to the ATOS Regular cassette, and finally to the Kapitex filters.  The Kapitex nighttime filter provides the greatest resistance, so it should probably be tried last after you have gotten used to the feeling of added resistance to air flow, and it should only be used during sleep.

    HMEs cannot completely restore the functions of the nose and upper airway in conditioning the air we breathe to the standards we enjoyed prior to becoming laryngectomees.  They can, however, make a significant different in reducing coughing and excessive mucus production, and deliver a better quality of air to our lungs than the alternative stoma covers.  They can also make a noticeable improvement in voicing for many, and they can help maintain lung function.  While some laryngectomees will decide that they are not worth the additional hassle of using them or their cost, every laryngectomee should at least consider giving them a fair trial.