Possible Problems

 

 

 

 

 

 

respiratory problems

 

 

Many of us, larys or non-larys have had intermittant problems for years with feeling like the air is heavy. We know that humidity can do this but I have often wondered if barometric pressure had something to do with feeling much more tired (and sometimes harder to breathe).

 

The article on this website is worth reading.

http://www.rotech.com/respiratory/forms_docs/BEWeather.pdf


Weather and Breathing

 

Excerpts of interest:

 

Temperature
Changes in temperature seem to affect the level of dyspnea (the sensation
of shortness of breath). How could temperature have an effect? Extreme hot
or cold conditions stress the entire body. In an effort to maintain a
constant body temperature (98.6 degrees Fahrenheit), you expend additional
energy to warm or cool your body. This additional energy requirement also
increases the amount of oxygen your body is using. Breathing hot or cold
air can also have a drying or irritating effect on the airway causing
bronchospasm (contraction of the smooth muscle that surrounds the airway).
Bronchospasm decreases the size of the airway and thus makes it more
difficult to get the air in and out of the lung, increasing shortness of
breath.

 

Humidity
High humidity is also a cause of increased complaints of shortness of
breath. There are a couple of possible explanations for this phenomenon.
First, as humidity increases, the density of the air increases. More dense
air creates more resistance to airflow in the airway resulting in an
increased work of breathing (i.e., more shortness of breath). Another
possible explanation is that as humidity increases, the prevalence of many
known airborne allergens increases. Dust mites and molds both increase in
high humidity. My wife never experienced any breathing symptoms in her life
until we moved to an old house with a damp, moldy basement.

 

Barometric Pressure and Elevation
As barometric pressure drops, less oxygen is available in the air. This is
the same principle that causes a decrease in oxygen level as you travel to
higher elevations. The total pressure is less and so the oxygen component
is less. When barometric pressure drops, as when a storm front passes,
barometric pressure can change 30-40 millimeters of mercury (ie, The units
are in mm of mercury [abbreviated mmHg] or “torr” when measuring air
pressure). Although the effect on the partial pressure of oxygen that
reaches the air sacs in the lungs is small (maybe 5-10 mmHg), a change of
just a few points could increase shortness of breath.

 

NOTE: In every one of these, it mentions either our using more oxygen or a
lesser amount of oxygen available.

Pat Sanders

 

 

pulmonary function test

 

Advice from members

 

1. You should be able to take a pulmonary function test. If you wear a HME
filter or a Hands Free Valve, they should be able to plug right into the
housing. (I wear a Hands Free Valve and have had a function test done in
this way.) If you do not wear such a device, the technicians should be able to use a
pediatric mask that is normally used with an ambu-bag to get a good seal
around your stoma. You can then perform the function tests. Any number of
laryngectomees have had a pulmonary function test done this way.

Carl S - CT

 

2. I recently had a pulmonary test and even though I was the first
lary they had tested they effectively improvised by taping the intake
nozzle or nebulizer to my stoma. Their results indicated I was between
80-90% normal....adjusting for possible leakage their professional
opinion was that I was near normal. An intern told me that the hospital
in Gainesville, Fla. that deals with larys on a more regular basis has
some kind of a device they have designed for use with larys in
performing this test.

Harry W - FL

 

3.  There is a formula to adjust the final readings of a pulmonary function test for laryngectomees. There may be those out there that have been tested and the reported results may not be accurate if the formula was not used.

Jack H - CA

 

4. Many years ago, I had to have a PFT done at the hospital. They just inserted a tube into my stoma which had a little blow-up cuff to keep it tight and so air wouldn't leak around it. The only problem I had was that each time I got mucus, we had to remove the tube (after deflating
the cuff), cough out the mucus, and start again. But I don't recall this being a major issue.

Vicki M -WI

 

5. Thanks to the talent of the nurses and technicians, they put together a system that I still use today. It consists of the following:

  1. Oxygen Pocket Mask w/Inflatable Cuff to conform a tight seal about neckand stoma.
  2. HME Inline Filter to add a little resistance.
  3. 12-18 inches of Corrugated Oxygen Hose. Diameter should be the same size as the input  hose on the test machine.
  4. Miscellaneous adapters, couplings and sleeves require to assemble the system.

Once this is assembled and used for the test, you may need to hang on to it. Part of my rehab consists of using a spirometer and some other device which require use of the whole mask assembly. You may want to ask beforehand so that the assembly will adapt to every thing.

Tom - CT

 

6. I had a pulmonary function test done at Mass General Hospital a few years ago. They had to do a bit of fiddling around, but it was not a serious problem. If you have a lary tube take it in with you. They should be able to hook right up to that.

Elinor - MA

 

7. A PFT is generally not a necessity in day to day recuperation of a Lary, or lung surgery patient (which I was prior to my laryngectomy). The test provides two pieces of information: 1) what is the air volume intake of the patient (as compared to "normal" for size/weight/age) and 2) what is the blood saturation level (again compared to "normal"). The doctor may order such a test if there are concerns about either/both of the criteria which may be affecting the patients well being and/or if the results of such a test are prerequisite for a claim such as workman's compensation, SSD, etc. There may be other reasons for such a test of which I am not aware.
Dave - FL

 

 

 

Being on Oxygen

 

 

OXYGEN NEEDED?

 

 

If you are having breathing problems, you might look at different types of breathing help.This site has a beginning education for you:

http://www.rotech.com/respiratory/index.html

 

Their article on how weather affects your breathing is the best I have seen:

http://www.rotech.com/respiratory/forms_docs/BEWeather.pdf

It explains how weather, humidity, barometric pressure, temperature and elevation affect your breathing.

 

 

Shortness of breath may be caused by a number of things. Read the above article and it ends with suggestions for controlling your environment. This applies if you are on oxygen or not.

 

 

 

OXYGEN AT HOME

 

 

I was on oxygen several years ago. I’ve felt fine since going off of it till my body betrayed me recently. Turns out I have pulmonary hypertension and was in need of oxygen again, which I was objecting to. I finally got to the point of needing it after I became unresponsive a couple times—once IN the ER, another time at home.

 

I was set up with oxygen at home. We got a concentrator (makes oxygen from the air), and a machine where we can fill the IFILL tanks from—also getting oxygen from the air. Several years ago, we had a large liquid oxygen tank in the house that needed to be refilled periodically. With the new system, I also had a machine alongside our bed where there was a bottle of distilled water to humidify the oxygen that I received through a mask on my neck over my stoma. I highly objected to this very noisy machine, thinking what’s more important, oxygen or sleep?! I finally figured out that the concentrator (in another room) could be hooked up to a bottle of distilled water. So we got rid of the little noisy machine. I also obtained Scoop Transtracheal oxygen tubes that go directly into my stoma (which I wore several years ago), and could be hooked up to a small portable pulse dose tank. The oxygen company didn’t think it would work. I told them it worked several years ago. So, on order of the doctor, they finally brought the pulse dose tank, and we hooked everything together. They had me walk back and forth in our hallway and up and down the stairs several times with the pulse dose portable tank. My oxygen level stayed in the 90’s the entire time. The therapists were very surprised. My response was “told you so”. I’m much happier with this set-up than the mask on my  neck. It’s much less noticeable and not wasting all that oxygen just blowing around my neck. I do have to be more conscious of keeping my stoma well hydrated with pink bullets or an atomizer.

 

I recently went to get a sleep study done. After applying all the wires to my legs, chest, back, near my eyes and ears, chin, and head, the technician wanted to place a two pronged nasal cannula at my stoma. This particular thing was to check my breathing in and out. I offered another suggestion after making sure that this particular tubing would be disposed of later. I suggested cutting off the part with the two prongs on it, then to tape it about 1 1/2” away from the ends. I then suggested we put these ends inside my stoma tube along with my transtracheal oxygen tubing. She told me in the morning when done with the sleep study that this particular set-up worked very well. Again—“told you so”.

 

I am now working on getting something that is portable where we can leave the house for more than a day. I have three of these small tanks that last about 4-5 hours—allowing me to leave for a good part of a day.

 

If you have a condition where you can’t take a deep enough breath, I’m not sure if the transtracheal oxygen to the pulse tanks would work. I don’t have any trouble breathing, so it works just fine with me.

 

Vicki Metz, WI 2011
lary 1996

 

 

 

OXYGEN AWAY FROM HOME

 


I rented a portable concentrator from the oxygen company--like a small piece of luggage on wheels and with a handle. I can use it either pulse or continuous. It runs on batteries (2 included), or on regular electricity (at night in the hotel) or in the car (in the "cigarette lighter"). This worked fine in the car and hotel because there was little lifting of this rather heavy unit. I also used this unit when my mother, sister-in-law, and I went to Branson, MO in the car (the unit had to be hauled out of the car into about 3 motels for a 5 day trip). We were also talked into renting rather than buying this unit. This way, we always get a machine that is in good working order, don't have to worry about having repairs made at our expense, and as equipment improves, we'd benefit from that also.

 

We had planned a trip to Colorado by Badger Bus for 1 week. After we put the first payment down, we remembered the higher altitude and I asked my doctor about this trip. He said it would NOT be in my best interest to take a trip to a high altitude place. Plus there would be the issue of lifting this machine up & down the steps of the bus every AM and PM. We needed to ask for a bus with electrical outlets on it. I'd still probably have difficulties in the high altitude with any exertion. We canceled this trip.

 

When I wrote about this O2 in the first segment above, one of the WW members contacted me that he was making and selling "bibs" for the O2. His address is:

"Don Layton" <head_n_neckcancer@sbcglobal.net (You can get brochures from him.)

With this particular bib, I can attach my O2 tubing to the bib, and get continuous oxygen at night or just when at home, and using my HME during these times.

 

Otherwise, with the pulse dose portable tanks for when I leave the house, I can't use the HME (due to the small tube that goes into my stoma tube) and thereby getting more direct oxygen and also drying my stoma mucous a bit more. I checked my O2 level one night--every time I woke up, and my O2 level was in the 90's. I cannot use pulse dose at night--I don't breathe deeply enough for it to give me any oxygen.

 

The advantage for me is it is much less cumbersome than that larger blue tubing that loves to collect water and bubble. Plus, away from home, the set-up I have is much less noticeable. I don't want to draw attention to myself with that large blue tubing.

 

Also, while away from home, I carried 3 portable tanks for when I would go to events where I didn't want to drag the larger unit around, or when I left the hotel in Branson for shows. These smaller tanks are only refillable at home, so once emptied, I couldn't use them anymore on our trip. I had to take them home for refilling. But each tank is good for 4-6 hours. If I'm just sitting quietly (not exerting myself), I would either turn the tank off or set it at 1 L/min.

 

Vicki Metz, WI 2011
Lary 1996

 

comments from our members on the email list

 

 

The Question was: "I am at the point where I need oxygen when active, flying or at high altitudes. I'd like to know if anyone has experience with using an oxygen
concentrator with a trach mask."
He also asked about the Inogen One G3 portable.

 

1. Don Layton makes bibs for use with oxygen Works great and you don't need a trach mask.

 

2. my use of an oxygen concentrator and trach mask is a bit different since I use it only at night. For general information here is my experience. I hope someone finds it helpful. I use a concentrator with a trach mask. Have had no problems. In fact, since I have a tendency to slip down in the bed and my chin almost covers the stoma, I find the trach mask is a life saver in keeping the airway as open as possible regardless of my sleeping position.

 

3. My experience is with the Sequal Eclipse III Portable concentrator but it shouldn't make much difference when it comes down to the pulsed mode. You should ask your supplier about the pediatric sized trach mask, so you can give it a try as well as the adult size. I use Blom-Singer HME buttons in conjunction with their adhesive housing. Both size masks willcover them nicely. The "pulse mode" is sensitive to inhalation pressure differential and, in my case, requires a pretty good mask seal to function reliably in pulse mode. I also place tape over the 1/2" hole in the mask to enhance that differential. Trial and error will produce solutions. The Sequal Eclipse will function as a 7/24 concentrator if you visit destinations at higher altitudes. It comes with 120 VAC power supply as well as with an automotive 12 VDC supply which will run the device while one is on the road. It plugs into the cigarette lighter socket in the dash
or console. Please let me know if you have any questions, I'd be happy to try to help.

( I have suffered from Emphysema for the last 10 years. 2 years ago, I was diagnosed with cancer of the larynx and, after radiation and chemo, found that it did not succumb to
that therapy. My laryngectomy was performed exactly 1 year ago and have good reports on that but the COPD marches on.) WW will be a great help to you.

 

4. My husband travels with the Eclipse 3 and needs it more often when he is at high altitudes and when we fly. It has two battery packs that last 3 hours each and an adapter that plugs in a cigarette lighter and works off the car battery. The adapter works on electricity at home. We have had no complaints with the Eclipse but we also ride motorcycles and are interested in the smaller compact unit. We have been watching the commercials for the small portable unit but would like to know if anyone has experience with it first.

 

 

 

 

 

 

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