Living with Alpha-1 - AlphaNet https://www.alphanet.org/living-with-alpha-1/ Tue, 27 Dec 2022 22:01:06 +0000 en-US hourly 1 https://wordpress.org/?v=6.0.5 https://www.alphanet.org/AlphaNet/wp-content/uploads/2022/05/cropped-Untitled-design-80-1-32x32.png Living with Alpha-1 - AlphaNet https://www.alphanet.org/living-with-alpha-1/ 32 32 Oral Hygiene and Overall Health for Alphas https://www.alphanet.org/living-with-alpha-1/staying-healthy/oral-hygiene-and-overall-health-for-alphas/ https://www.alphanet.org/living-with-alpha-1/staying-healthy/oral-hygiene-and-overall-health-for-alphas/#respond Thu, 10 Sep 2020 18:23:06 +0000 http://ww2.alphanet.org/?p=2243 We all know prevention is one of the keys to staying healthy. Oral hygiene is another important step in maintaining overall health. And, it’s not just about having whiter teeth and a brighter smile! Download Oral Hygiene and Overall Health for Alphas as a PDF. People used to think that tooth loss was the worst...

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We all know prevention is one of the keys to staying healthy. Oral hygiene is another important step in maintaining overall health. And, it’s not just about having whiter teeth and a brighter smile!

Download Oral Hygiene and Overall Health for Alphas as a PDF.

People used to think that tooth loss was the worst result of gum disease. But studies have shown oral health affects your entire body. Bacteria in your mouth, especially from decaying teeth or infected gums, can easily enter your bloodstream. From there, they migrate through your body damaging your heart, lungs, and other organs.

Recent research also suggests the bacteria found in your mouth and throat can be drawn into the lower respiratory tract. Then, they cause infections in your lungs and bronchial tubes.

Some people are more likely to get respiratory infections:

  • The very young or very old
  • Alphas with lung disease
  • People with weak immune systems

For these people, good oral hygiene is a key part of a disease management and prevention program.

Some medicines cause dry mouth

Some of the inhaled medications for COPD cause dry mouth. The most common of these are short-acting muscarinic antagonists (SAMA) and long-acting muscarinic antagonists (LAMA) inhalers. To prevent dry mouth, practice your inhaler technique, and rinse your mouth with water or mouthwash after using your inhaler.

What is gum disease?

Gum disease starts when a build-up of bacteria, called plaque, collects at the gum line. Over time, this hardens into calcium deposits called calculus or tartar. With poor oral care, these bacteria can cause swelling of the gums, or gingivitis. They may end up penetrating the gum line and spreading into the underlying bone.

The human mouth always contains some bacteria. But, any kind of dental infection increases the number of bacteria present. It can also lead to hard-to-treat infections in the lungs or airways.

According to some estimates, as many as three out of four adults over the age of 30 may suffer from some degree of gum disease. Fortunately, with proper oral care, gum disease can be controlled or even reversed.

Oral hygiene tips

Visiting your dental hygienist on a regular basis is one of the most important steps you can take to maintain or improve your oral health. Your dental hygienist will review your medical history, clean and polish your teeth, and refer any areas of concern to your dentist or physician.

Developing a good daily cleaning regime, along with routine office visits with a dental hygienist, will control or reverse gum disease. Less than five minutes, twice a day, is all it takes to maintain or improve oral hygiene:

Brushing:

  1. Place your brush at a 45-degree angle at the place where your teeth and gum meet.
  2. Apply gentle pressure as you move the brush away from the gums.
  3. Don’t forget to brush your tongue (with or without toothpaste), where bacteria build up.
  4. Brush for about three minutes.

Flossing:

  1. Wrap 18 inches of floss around your middle fingers until you have a two-inch length between them.
  2. With the thumb and forefinger of each hand, guide the floss gently and carefully between each tooth in a “C” shape.
  3. Gently guide it up and under the gum line.

Mouthwash: There is no evidence that using antibacterial mouthwash prevents upper respiratory infections. But you will have better breath.

Dentures: Clean your mouth and get regular check-ups to prevent oral health problems.

Nothing puts a smile on your face like better health, so take care of your teeth and gums!

For more in-depth information on this topic, please visit the Big Fat Reference Guide (BFRG). If you are enrolled in AlphaNet’s Subscriber Portal, you can access the BFRG here.

Download Oral Hygiene and Overall Health for Alphas as a PDF.

 

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Nutrition https://www.alphanet.org/living-with-alpha-1/staying-healthy/nutrition/ https://www.alphanet.org/living-with-alpha-1/staying-healthy/nutrition/#respond Thu, 10 Sep 2020 17:57:05 +0000 http://ww2.alphanet.org/?p=2232 Overall good Alpha nutrition includes a healthy diet. Check out www.choosemyplate.gov and download the app. Some guidelines to remember: Not too much or too little Lots of different foods of plant or animal origin A balance between the energy you take in and the energy you put out Download Nutrition as a PDF. All food...

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Overall good Alpha nutrition includes a healthy diet. Check out www.choosemyplate.gov and download the app. Some guidelines to remember:

  • Not too much or too little
  • Lots of different foods of plant or animal origin
  • A balance between the energy you take in and the energy you put out

Download Nutrition as a PDF.

All food and beverage choices matter

Focus on making healthy food and beverage choices from all five food groups to get the nutrients you need.

  • Fruits
  • Vegetables
  • Grains
  • Protein foods
  • Dairy

Eat the right number of calories for you based on your age, sex, height, weight, and physical activity level.

Building a healthier eating style can help you avoid overweight and obesity and reduce your risk of diseases such as heart disease, diabetes, and cancer.

Choose a healthy eating style

Use Nutrition Facts labels and ingredient lists to find amounts of saturated fat, sodium, and added sugars in the foods and beverages you choose.

Look for food and drink choices that are lower in saturated fat, sodium, and added sugar.

  • Eating fewer calories from foods high in saturated fat and added sugars can help you manage your calories and prevent overweight and obesity.
  • Most of us eat too many foods that are high in saturated fat and added sugar.
  • Eating foods with less sodium can reduce your risk of high blood pressure.

Make small changes to create a healthier eating style

Think of each change as a personal “win” on your path to living healthier. Each MyWin is a change you make to build your healthy eating style. Find little victories that fit into your lifestyle and celebrate as a MyWin!

Start with a few of these small changes:

  • Make half your plate fruits and vegetables.
    • Focus on whole fruits.
    • Vary your veggies.
  • Make half your grains whole grains.
  • Move to low-fat and fat-free dairy.
  • Vary your protein routine.
  • Eat and drink the right amount for you.

For more in-depth information on this topic, please visit the Big Fat Reference Guide. If you are enrolled in AlphaNet’s Subscriber Portal, you can access the BFRG here.

Download Nutrition as a PDF.

 

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Risk Factors at Work: Identify and Reduce Them https://www.alphanet.org/living-with-alpha-1/staying-healthy/risk-factors-at-work/ https://www.alphanet.org/living-with-alpha-1/staying-healthy/risk-factors-at-work/#respond Tue, 14 Jul 2020 17:34:51 +0000 http://ww2.alphanet.org/?p=1594 Many workplaces contain harmful substances. They put healthy people at risk, and are very harmful to Alphas. Being aware of risk factors at work may help you make informed choices about your job and your career. Download Risk Factors at Work – Identify and Reduce Them as a PDF. For example, if you’re a young...

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Many workplaces contain harmful substances. They put healthy people at risk, and are very harmful to Alphas. Being aware of risk factors at work may help you make informed choices about your job and your career.

Download Risk Factors at Work – Identify and Reduce Them as a PDF.

For example, if you’re a young Alpha, avoiding jobs that expose you to toxic substances reduces your risk of lung or liver disease.  And, if you get your diagnosis while working in a high-risk environment, you may need guidance and support to find and prepare for a new career.

Risks & results

Risk factors at work come in many forms such as smoke, gas, dust, liquids, vapors, or mists. The greater your exposure to a toxic substance, the more damage you’ll suffer. Many substances are twice as harmful to Alphas because they damage the lungs and liver.

Some hazards harm you right away. Others only cause damage after repeated, long-term exposure. For example, silica dust causes a serious lung disease called silicosis, but only after years of exposure. And, long-term exposure to carbon tetrachloride can cause hepatitis.

You can see and smell some breathing hazards, like dust or gasoline fumes. Substances like these may irritate your eyes, nose, and throat. But other hazards, like carbon monoxide, have no odor. Or your sense of smell may weaken with repeated exposure to hazards. You may not be aware even when you’re in danger.

Risk factors at work — Exposure to toxic substances

Ammonia: A gas that is an irritant to the eyes, nose, and throat. It causes upper airway constriction.

Asbestos: A dust that causes lung fibrosis or scarring of the tiny air sacs in the lungs and surrounding tissue. It also causes lung cancer.

Phosgene: A toxic gas that causes pulmonary edema, chemical pneumonitis, and corrosive burns to air passages. It also kills your liver cells.

Carbon Monoxide: A colorless, odorless gas that interferes with the ability of the blood to carry oxygen to the vital organs of the body.

Carbon Tetrachloride: A colorless liquid that causes cancer. It’s toxic to the central nervous system, liver, and kidneys.

Toluene: A chemical with a distinctive smell, used in nail polish and paint thinners that has a distinctive smell. It’s often used in the plastics, insulation, and automotive industries. Small amounts of toluene diisocyanate (TDI) in the workplace causes asthma and wheezing. Toluene in larger amounts is also toxic to the liver.

Note: If you are repeatedly exposed to toxic substances on the job, your employer must provide you with the right kind of safety equipment. This includes respirator masks and protective clothing.

You can educate yourself about the substances you’ll come in contact with at work. They’re listed on Material Safety Data Sheets (MSDS). These documents give recommendations for avoiding, reducing, and eliminating exposure. They also tell you what to do if you’re exposed.

Note: As an employee, it’s your job to report an unsafe and unhealthful work environment to the Occupational Safety and Health Administration (OSHA).

Protect yourself with a mask

Respirator masks reduce the risk of exposure from inhaling smoke, dust, fumes, mist, or particles. Make sure

  • You have the right mask for your specific exposure — the substance and the particle size.
  • Your mask fits properly with no gaps or leaks
  • Your mask isn’t worn out or damaged.

Respirator masks may not work for you, as they can restrict breathing even more. In this case, you may need to be reassigned to a job that doesn’t put you in contact with harmful substances. Work closely with the occupational health nurse, your supervisor, and your doctor to make sure you have a safe work environment.

More tips to reduce your risks

For more in-depth information on this topic, please visit the Big Fat Reference Guide. If you are enrolled in AlphaNet’s Subscriber Portal, you can access the BFRG here.

Download Risk Factors at Work – Identify and Reduce Them as a PDF.

 

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Outdoor Risk Factors: Identify and Reduce Them https://www.alphanet.org/living-with-alpha-1/staying-healthy/outdoor-risk-factors/ https://www.alphanet.org/living-with-alpha-1/staying-healthy/outdoor-risk-factors/#respond Tue, 14 Jul 2020 17:07:24 +0000 http://ww2.alphanet.org/?p=1590 Poor outdoor air quality and air pollution affect everyone, but they’re very bad for people with lung and liver problems. Going outside exposes you to outdoor risk factors like air pollution secondhand smoke dust fumes chemicals mold, fungi, and bacteria Download Outdoor Risk Factors – Identify and Reduce Them as a PDF. Certain places have...

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Poor outdoor air quality and air pollution affect everyone, but they’re very bad for people with lung and liver problems. Going outside exposes you to outdoor risk factors like

  • air pollution
  • secondhand smoke
  • dust
  • fumes
  • chemicals
  • mold, fungi, and bacteria

Download Outdoor Risk Factors – Identify and Reduce Them as a PDF.

Certain places have poorer air quality than others. The American Lung Association has information about air quality in specific areas.

Even if you’re careful, you may have breathing problems when exposed to pollutants and other irritants. But, talk to your doctor before you adjust your medicine or the level of your supplemental oxygen. Your doctor will assess your condition and recommend options for treatment and risk avoidance.

Air pollution risks

In communities where air pollution is common, news and weather reports often give air quality reports and warnings. If air quality is low, they may recommend that you stay inside or limit your activities when outdoors. You can reduce your risk by following their advice. And, if you have to stay indoors, keep your windows closed.

Outdoor risk factors during car travel

  • Steer clear of crowded highways at the height of rush hour.
  • If traffic’s bad, find another route. Or, plan travel when traffic is lighter.
  • If you can’t avoid rush hour, keep your windows closed and turn on your air conditioner. Replace your cabin air filters as scheduled — or more often if needed.

More tips to reduce your risks

For more in-depth information on this topic, please visit the Big Fat Reference Guide. If you are enrolled in AlphaNet’s Subscriber Portal, you can access the BFRG here.

Download Outdoor Risk Factors – Identify and Reduce Them as a PDF.

 

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Air Travel with Oxygen https://www.alphanet.org/living-with-alpha-1/traveling-with-alpha-1/air-travel/ https://www.alphanet.org/living-with-alpha-1/traveling-with-alpha-1/air-travel/#respond Tue, 14 Jul 2020 13:28:45 +0000 http://ww2.alphanet.org/?p=1583 Air travel poses special challenges to Alphas who use oxygen therapy. But, with a little advance planning, you’ll have no problem. Download Air Travel with Oxygen as a PDF. What’s tricky about air travel for Alphas? As your airplane gains altitude, air pressure in the cabin decreases, and so does the amount of oxygen in...

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Air travel poses special challenges to Alphas who use oxygen therapy. But, with a little advance planning, you’ll have no problem.

Download Air Travel with Oxygen as a PDF.

What’s tricky about air travel for Alphas?

As your airplane gains altitude, air pressure in the cabin decreases, and so does the amount of oxygen in the air. This isn’t usually a problem for people without lung disease. But if you have decreased lung function, it puts you at risk of low blood-oxygen levels (hypoxemia).

Even if you only use oxygen therapy when you exercise or sleep, you may find that you need it for air travel. It may also help when you’re visiting somewhere at a high altitude. Talk to your doctor to see what they recommend.

If you’re traveling with oxygen, you need to plan ahead. You should consult with your doctor well in advance of your trip. This gives you time to talk to your oxygen provider and make plans to ensure your oxygen needs are met before, during, and after your flight.

Understand airline-provided in-flight oxygen.

Unfortunately, the oxygen masks that drop down when cabin pressure falls aren’t meant for oxygen therapy. You’ll have to make other arrangements. In most cases, this means using in-flight oxygen provided by the airline.

The Federal Aviation Association (FAA) has requirements for in-flight oxygen. You can only bring FAA-approved portable oxygen concentrators. Very few airlines provide their own oxygen cylinders and equipment anymore. You might find this option on some foreign carriers and when traveling overseas.

If you do find air-line provided oxygen service, you will find the costs vary. Some smaller commuter airplanes don’t provide the service at all. The cost of this service generally ranges from $75 to $150 per flight segment. Before you buy your airline ticket, inform the airline that you’ll need oxygen therapy, and find out how much they charge for the service.

Plan ahead.

Most airlines require two weeks’ notice to guarantee oxygen arrangements. But some need as little as 48 hours’ notice. It’s best to make your arrangements as far in advance as you can and to reconfirm these arrangements as your travel date draws closer.

Note: The airline will not supply oxygen for you to use while you’re transferring between flights, getting your luggage, or waiting for a ride. If you need continuous flow oxygen therapy, you must arrange this with an oxygen service provider.

Traveling with a Portable Oxygen Concentrator (POC)

The FAA has approved the use of certain POCs for in-flight use. However, airlines have their own rules for their use. They may only allow a specific type, or they may not allow them at all.

Ask the airline about their POC policy before making your travel plans. If they do let you bring your own POC, you’ll still need to notify them that you’ll be doing so when you buy your ticket.

Bring a doctor’s note.

If you’re flying with a POC, you’ll need a signed letter from your doctor to carry with you during your trip. Each airline requires its own form. You may be able to download a copy from the airline’s website or call to get one. Once your doctor fills out the form and signs it, make a few copies to have just in case.

Most forms include:

  1. Your ability to respond appropriately to alarms
  2. When you need to use your oxygen
  3. Maximum flow rate under normal operating condition

Have a plan for powering your concentrator.

Get to the airport early, as security will need to check your concentrator. Some planes have outlets on board, but you can’t count on this. It’s safer to bring batteries. Airlines may require you to bring enough batteries to power your POC for at least 150% of the expected maximum flight duration.

Tips for powering your POC:

  • If you want to conserve power, you can plug it into an outlet at the gate. But, remove the batteries before you plug in your POC. And make sure your AC power adaptor is the right type for the outlet.
  • During take-off and touchdown, store your concentrator under the seat in front of you. You don’t have to turn it off during take-off and landing.

Prepare for overseas travel.

If you’re flying overseas, you must check with the airline about traveling with your POC. Many airlines don’t allow their use on overseas flights.

There may also be issues with electrical power when you travel overseas. In the U.S., we use 120 Volts with 60 HZ. Europe uses 220 Volts with 50 Hz. Your POC may overheat and shut down even if you’re using the right kind of adaptor. Be sure to discuss this issue and other issues associated with overseas travel with your POCs manufacturer or supplier before you travel outside the U.S.

Think about your connecting flights.

If you have connecting flights, ask for a wheelchair with an attendant to help get you to the next leg of your trip. Riding instead of walking helps you conserve energy and reduce the stress of fighting your way through the airport.

Some larger airports have electric carts to shuttle you from gate to gate. Call the airport ahead of time and arrange to have a cart waiting for you at your gate.

Travel with a friend.

It’s best to travel with a companion who’s familiar with your oxygen system, so they can help you change batteries and silence alarms on your POC during the flight.

After the flight, your friend should also know how to:

  • Change cylinders
  • Open tanks
  • Attach a new regulator
  • Adjust the flow

Pack supplies for extra peace of mind.
Bring back-up supplies for any issues that may arise, including:

  • Extra tubing
  • Cannulas
  • Adaptive pieces
  • A tank wrench
  • T-connectors
  • Swivels
  • Electric adaptors

Pack these items in your carry-on luggage so you can access them quickly, and there’s no chance of them getting lost.

Other concerns about air travel

Cabin air quality tends to be dry. This can increase your risk of getting an upper respiratory infection. So can sitting close to others during the flight.

Here are some simple steps to take to help reduce your risks when flying:

  • Drink plenty of water to stay well-hydrated.
  • Avoid coffee, tea, and alcohol. They dehydrate you.
  • Ask to be reseated if you’re near someone who is coughing, sneezing or appears to have a cold.
  • Wear a mask to reduce your exposure to airborne droplets.
  • Bring antibiotics in case you develop an infection while you’re away from home.

Air travel may have its challenges, but none of them are impossible to overcome. Plan ahead, and then relax and enjoy the journey!

For more in-depth information on this topic, please visit the Big Fat Reference Guide (BFRG). If you are enrolled in AlphaNet’s Subscriber Portal, you can access the BFRG here.

Download Air Travel with Oxygen as a PDF.

 

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Travel Tips for Alphas on the Move https://www.alphanet.org/living-with-alpha-1/traveling-with-alpha-1/travel-tips/ https://www.alphanet.org/living-with-alpha-1/traveling-with-alpha-1/travel-tips/#respond Tue, 14 Jul 2020 13:14:26 +0000 http://ww2.alphanet.org/?p=1579 Being an Alpha doesn’t mean you have to give up business travel, vacations, and visits to friends and family. With careful planning, you can travel safely and have just as much fun. These general travel tips can help. Download Travel Tips for Alphas on the Move as a PDF. Travel tips — before you go...

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Being an Alpha doesn’t mean you have to give up business travel, vacations, and visits to friends and family. With careful planning, you can travel safely and have just as much fun. These general travel tips can help.

Download Travel Tips for Alphas on the Move as a PDF.

Travel tips — before you go

Discuss your travel plans with your doctor to make sure you’re well enough to travel. They’ll want to know where you’re going, how you’ll get there, and how long you’ll stay. You can also talk about the climate and other environmental factors that might affect your health.

Make a folder for your travel documents and your health-related documents. You may find it useful to carry a letter from your doctor stating that you’re fit for travel. It should also contain a brief summary of your present health and a list of your medicines. Make sure this folder is easy to access during your travels.

Identify a medical facility and a doctor who can care for you at your destination. This is very important if you’re going to be staying for an extended period of time. Your primary care doctor or AlphaNet Coordinator should be able to help you with this.

Review your health insurance coverage. Check your policy details before you leave. Make sure you’re covered if you leave the state or country. You may need to add coverage for international travel. A travel agent may also be able to help you with this.

Plan ahead if you’re traveling with oxygen. Traveling with oxygen requires some extra planning, especially if you’re going by plane. You need to make sure you have enough oxygen to last for the whole trip, and a way to power your portable oxygen concentrator.

During your trip

Bring a list of important contact information. This should include the names and phone numbers of

  • Your doctor
  • Your emergency contact
  • The airline or cruise line you’re traveling with
  • A contact person at your destination

Bring enough medicine for your whole trip. If you need refills, get them before you leave. If you’re going by plane, carry a supply of medicine in your carry-on luggage. Keep them in their original containers and make sure they’re labeled.

Carry antibacterial wipes or sprays. To limit the risk of infection while traveling, clean surfaces that can carry bacteria, like seat belts and tray tables. But, remember, hand washing is the best way to protect yourself. If you don’t have soap and water, use wipes or sprays.

For more in-depth information on this topic, please visit the Big Fat Reference Guide (BFRG). If you are enrolled in AlphaNet’s Subscriber Portal, you can access the BFRG here.

Download Travel Tips for Alphas on the Move as a PDF.

 

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Travel With Oxygen Therapy https://www.alphanet.org/living-with-alpha-1/traveling-with-alpha-1/travel-with-oxygen/ https://www.alphanet.org/living-with-alpha-1/traveling-with-alpha-1/travel-with-oxygen/#respond Mon, 13 Jul 2020 22:21:16 +0000 http://ww2.alphanet.org/?p=1573 If you use supplemental oxygen at home, you’ll have to do a bit of extra planning before you travel. But, taking care of your oxygen needs ahead of time gives you more freedom to enjoy yourself during your trip. Here are some guidelines for travel with oxygen therapy. Download Travel With Oxygen Therapy as a...

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If you use supplemental oxygen at home, you’ll have to do a bit of extra planning before you travel. But, taking care of your oxygen needs ahead of time gives you more freedom to enjoy yourself during your trip. Here are some guidelines for travel with oxygen therapy.

Download Travel With Oxygen Therapy as a PDF.

General guidelines for travel with oxygen therapy

Discuss your travel plans with your doctor.

They’ll want to know where you’re going, how you’ll get there, and how long you’ll stay. You can also talk about the climate and other environmental factors that might affect your health.

Discuss your travel plans with your home oxygen provider.

They can often help you arrange oxygen therapy during your trip. National chains can contact their other offices, and many local providers belong to larger national networks. Talking to your oxygen provider helps ensure you have enough oxygen to meet your needs.

If possible, work with a designated contact person. If that’s not an option, write down the name of everyone you talk to. They’ll probably ask for the following information:

  • Your name, address, and phone number
  • Contact information for your doctor (name and phone number)
  • Your oxygen prescription, which should list your flow rate and the type of system and equipment you use. Include specifics about tubing, cannulas, humidifiers, and nebulizers.
  • If you’re flying
    • Your departing airport or port and city
    • Your airline and flight number, departure gate number, any stops or layovers, arrival airport, and arrival gate
  • The address, phone number, and name of a contact person at your final destination
  • Name and number of an emergency contact

Review the specifics for each part of your trip. If there are any issues, point them out, and make adjustments. Make sure you understand what to expect at every step.

See Air Travel with Oxygen

Carry copies of your oxygen prescription.

They should list usage details and flow rates. You can pack one copy into your suitcase and carry one with your travel documents.

Arrange for oxygen therapy at your hotel.

If you need oxygen at your hotel, talk to the manager or concierge before your arrival. Let them know that your oxygen may arrive before you do. Find out where they’ll store your oxygen and supplies until you check-in. You can also ask them to set your supplies up in your room ahead of time.

Next, talk to your oxygen supplier, to see if the manager or concierge can sign for the delivery. If not, you may be able to e-sign a delivery ticket and return it by email.

Be sure to know where the hotel will store your oxygen and related supplies if they arrive before your scheduled check-in time. You can also ask them to bring everything directly to your room.

Travel with oxygen — by train

Train travel is an accessible, comfortable alternative to air travel. And it requires most of the same type of advanced planning if you use oxygen therapy.

Start by talking to your doctor and home oxygen provider about your travel plans. This helps ensure you have the oxygen you need at all times.

Amtrak can accommodate your oxygen therapy needs with a 12-hour notice. They don’t require a prescription or a letter from your doctor. But, carrying a copy is still a good idea, along with a brief medical history and a list of any medicine you take.

Using oxygen onboard the train

Unlike air travel, you can use your own oxygen equipment on the train, as long as the total weight of all your tanks is less than 120 lbs. (54 kg). Within that 120 lb. limit, Amtrak allows:

  • No more than 2 tanks, 50 lbs (22.7 kg) each
  • No more than 6 tanks, 20 lbs (9 kg) each

And, Amtrak doesn’t charge you for bringing your oxygen onboard but does limit oxygen to certain trains. And you will need to call Amtrak for a reservation.

When you’re traveling by train, make sure you bring:

  • Enough oxygen for the entire length of your trip, plus about 20% extra.
  • Enough batteries to run your concentrator for up to 12 hours.
  • Extra supplies like tubing, cannulas, etc.
  • A list of emergency phone numbers, including your oxygen provider.

You’ll also want to make arrangements ahead of time if you’ll need more oxygen at your final destination.

Travel with oxygen — cruises

Cruises are another good travel option, as many cruise lines accept passengers with supplemental oxygen. They usually require 4-6 weeks advance notice, so the Special Services or Operations Departments can give their approval. And they’ll ask for a letter from your doctor that includes:

  • Approval for travel
  • A brief medical history
  • A current prescription for all medicine you take including oxygen

Using oxygen onboard the ship

Most passengers make arrangements with their suppliers to have their oxygen equipment delivered right to the cruise ship. Most cruise lines prefer liquid oxygen systems, but you should check with your cruise line before you travel.

You won’t have to pay extra to use the onboard oxygen you bring for yourself. However, you will have to avoid all smoking areas.

Travel with oxygen — by car

As with all other travel options, safe travel by car starts with talking to your doctor and your home oxygen supplier. Here are some other tips to keep you safe and comfortable:

Before you go

  • Map out your travel route and find places to fill your tanks along the way. (Your oxygen supplier may have local stores.)
  • Avoid driving during peak rush hour, as pollution can trigger breathing problems.
  • Consider traveling on scenic back roads to avoid traffic.
  • During the summer months, use the air conditioner, and roll up your windows.
  • If you’re traveling to an area with known allergens, time your trip to avoid peak season.
  • If you use supplemental oxygen, bring enough cylinders and tanks for your whole trip. And don’t forget to factor in the effects of altitude.
  • Make sure you have a supply of prescription medicines to last your whole trip.

Make sure your car is ready for the trip
Common sense and good preparations go a long way when you’re traveling by car — even if you don’t use oxygen! Before you leave home, have your car serviced.

  • Have the oil changed and assure all fluids are filled.
  • Be sure the spare tire is inflated
  • Make sure you have a jack, jumper cables, flares, and emergency supplies like water and blankets
  • If you plug your concentrator into your car’s electrical system, make sure the alternator and battery can handle the extra demand.

Transporting oxygen safely

If you’re traveling with extra oxygen, secure your cylinders or concentrator so they aren’t banging around during the trip. Jolting and banging can cause the oxygen to escape.

Store liquid oxygen reservoirs upright to prevent spillage and potential skin burns. Make sure they’re stored in a well-ventilated area, away from extreme heat. Never leave oxygen tanks in hot cars during the summer! Escaping oxygen can create a fire hazard.

Don’t be afraid to outsource.

Are you overwhelmed at the thought of making your own arrangements? Let someone else handle the planning! There are companies that specialize in helping people who need supplemental oxygen while they travel. Ask your AlphaNet Coordinator to recommend one or see what you can find through an Internet Search.

As you have read, you have many options for safe, comfortable travel with oxygen. Choose the one that works best, follow our guidelines, and enjoy your trip!

Helpful links

For more in-depth information on this topic, please visit the Big Fat Reference Guide (BFRG). If you are enrolled in AlphaNet’s Subscriber Portal, you can access the BFRG here.

Download Travel With Oxygen Therapy as a PDF.

 

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Travel with Augmentation Therapy https://www.alphanet.org/living-with-alpha-1/traveling-with-alpha-1/travel-with-augmentation-therapy/ https://www.alphanet.org/living-with-alpha-1/traveling-with-alpha-1/travel-with-augmentation-therapy/#respond Mon, 13 Jul 2020 22:07:31 +0000 http://ww2.alphanet.org/?p=1566 Good planning and organization are critical to travel with augmentation therapy. You have to plan ahead to make sure you have the drugs you need — and an infusion provider. Give yourself plenty of time to make arrangements. Download Travel with Augmentation Therapy as a PDF. Talk to your doctor about your plans to travel...

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Good planning and organization are critical to travel with augmentation therapy. You have to plan ahead to make sure you have the drugs you need — and an infusion provider. Give yourself plenty of time to make arrangements.

Download Travel with Augmentation Therapy as a PDF.

Talk to your doctor about your plans to travel with augmentation therapy.

Start by sharing your travel plans with your health care practitioner, and your infusion provider. They may have resources you can use when planning for your trip.

Many health care practitioners will encourage a double or triple dose infusion before you travel, so you won’t need infusions while you’re on vacation. Your health care practitioner will have to order these variations in infusions.

Talk to your health insurance company.

To maintain your therapy, you’ll need to find approved providers wherever you’re traveling to. Your health insurance company can help with that. They’ll also give you details about your coverage.

Note: If you’re on Medicare, you’ll have to arrange to receive your drugs at your destination. You’re not allowed to take them with you while traveling.

Find an infusion provider.

Arranging infusions when you’re away from home can be tricky. You may be able to locate a provider. But, they may not have experience with augmentation therapy. You’ll have to make sure they have the information and instructions they need to give you proper care. Your local infusion provider may be able to arrange for an infusion at your destination.

If you can’t find a provider, you may be able to adjust your infusion schedule or skip an infusion. Of course, your regular doctor must agree to these adjustments.

Get help if you need it.

If you use AlphaNet services, your AlphaNet Coordinator can help make sure you have everything you need when you’re traveling. This includes arranging your infusions and redirecting medicine and supplies.

Prolastin patients can work with nurse case managers at Talecris direct. If you’re on Zemaira, Aralast, or another augmentation therapy product, contact the provider. They’ll help with insurance coverage and locating providers.

What about out-of-state or international travel with augmentation therapy?

If your travel plans take you out of state or out of the country, you’ll need to find a doctor to take over your care while you’re away from home (an accepting physician).

The accepting physician will need specific details about your augmentation therapy. They’ll need access to your complete medical records, and will also want to see

  • Your medical history
  • Your allergy status
  • A list of your current medicines

Getting augmentation therapy for Alpha-1 doesn’t mean you can’t travel, or have a  healthy and fulfilling lifestyle. Good planning and preparation go a long way to assuring a safe and trouble-free experience.

Use the Pre-Travel Checklist for Augmentation Therapy to prepare for your next trip.

For more in-depth information on this topic, please visit the Big Fat Reference Guide (BFRG). If you are enrolled in AlphaNet’s Subscriber Portal, you can access the BFRG here.

Download Travel with Augmentation Therapy as a PDF.

 

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Choosing an Oxygen Delivery System & Service Provider https://www.alphanet.org/living-with-alpha-1/oxygen-therapy/choosing-an-oxygen-delivery-system/ https://www.alphanet.org/living-with-alpha-1/oxygen-therapy/choosing-an-oxygen-delivery-system/#respond Mon, 13 Jul 2020 18:40:35 +0000 http://ww2.alphanet.org/?p=1551 Before you choose an oxygen delivery system, discuss your choices with your healthcare practitioner. Then explore companies in your area that provide service. Start by checking with your health insurance provider. They may have contracts with specific companies in your area. Download Choosing an Oxygen Delivery System & Service Provider as a PDF. If you’re...

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Before you choose an oxygen delivery system, discuss your choices with your healthcare practitioner. Then explore companies in your area that provide service. Start by checking with your health insurance provider. They may have contracts with specific companies in your area.

Download Choosing an Oxygen Delivery System & Service Provider as a PDF.

If you’re free to choose for yourself, shop around. Companies generally offer the same products and systems. You want to find the one with the best service.

Start by talking to people you know who get oxygen therapy. Then call some companies and compare services and prices before making your final decision. Don’t be afraid to ask lots of questions.

Ask about the company

  • Are you a national company?
  • How many branches do you have, and where are they located?
  • Are you licensed by the state?
  • Are you accredited by Medicare/Medicaid and by the Joint Commission on Accreditation of Health Organizations (JCAHO )?

Ask about their products and services

  • What systems can you provide? What influences your decision to provide one system over another? (Note: they may only offer systems that make them the most profit.)
  • How often do you check or service your equipment?
  • How often do you deliver?
  • Will you help make arrangements for oxygen delivery when I’m traveling?
  • What is your emergency response time?
  • How long does it take to replace defective equipment?
  • How often will the respiratory therapist come to my home?
  • Do you have any customer testimonials?

Ask about costs

  • How much will this cost me? Most companies follow Medicare coverage guidelines. However, it’s good to have the facts about costs and coverage before you choose your system.
  • What if I choose to buy the system? Will you still provide service?

Choosing an oxygen delivery system

Thanks to advances in technology, you have a range of systems to choose from. And they all can help you maintain an active and healthy lifestyle.

Home oxygen equipment has two essential components:

  • The container or storage system holds the oxygen. The oxygen may be compressed gas, liquid, or from a concentrator.
  • The delivery system transports the oxygen from the container into your lungs.

When choosing a system look for one that meets your specific needs for mobility and portability — and fits your budget. It helps to talk to your healthcare practitioner and home oxygen therapy provider. They can help you think about your specific needs and select the system or systems that are the best fit.

For more in-depth information on this topic, please visit the Big Fat Reference Guide (BFRG). If you are enrolled in AlphaNet’s Subscriber Portal, you can access the BFRG here.

Download Choosing an Oxygen Delivery System & Service Provider as a PDF.

 

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Home Oxygen Safety Tips https://www.alphanet.org/living-with-alpha-1/oxygen-therapy/home-oxygen-safety-tips/ https://www.alphanet.org/living-with-alpha-1/oxygen-therapy/home-oxygen-safety-tips/#respond Mon, 13 Jul 2020 18:20:41 +0000 http://ww2.alphanet.org/?p=1548 Oxygen is a well-known fire hazard. It saturates clothing, hair, and bedding. That makes it easier for fires to start and spread. Here are some home oxygen safety tips to keep your home and family safe: Keep oxygen canisters at least 5-10 feet away from gas stoves, lighted fireplaces, wood stoves, candles, or other sources...

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Oxygen is a well-known fire hazard. It saturates clothing, hair, and bedding. That makes it easier for fires to start and spread. Here are some home oxygen safety tips to keep your home and family safe:

  • Keep oxygen canisters at least 5-10 feet away from gas stoves, lighted fireplaces, wood stoves, candles, or other sources of open flames.
  • Post “No Smoking” signs in every room of your home where you use oxygen. And, make sure nobody smokes around you when you’re using oxygen.
  • Secure your oxygen cylinders so they can’t be knocked over.
  • Be careful with oxygen tubing. Make sure you don’t trip over it or tangle it in furniture.
  • Don’t use an electric razor while using oxygen.
  • Do not use any oil, grease, or petroleum-based products on your equipment, or nearby while using oxygen.
  • Use water-based creams and lotions on your face, neck, and chest.
  • Keep your equipment supplier’s contact information by your phone. Follow their guidelines for safety checks. And, never try to fix broken equipment yourself.
  • Check your smoke detectors every month. Make sure they have fresh batteries.
  • Keep a fire extinguisher in the house, and practice what to do if there’s a fire.
  • Notify your local fire department, gas and electric companies, and telephone companies when you start using home oxygen therapy. You can request a “priority service listing” in case of power outages or when you need repairs.

Following these home oxygen safety tips should give you peace of mind about using supplemental oxygen at home. If you’d like to learn more, the American Lung Association has additional safety information.

For more in-depth information on this topic, please visit the Big Fat Reference Guide (BFRG). If you are enrolled in AlphaNet’s Subscriber Portal, you can access the BFRG here.

Download Home Oxygen Safety Tips as a PDF.

 

 

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Oxygen Delivery Systems https://www.alphanet.org/living-with-alpha-1/oxygen-therapy/oxygen-delivery-systems/ https://www.alphanet.org/living-with-alpha-1/oxygen-therapy/oxygen-delivery-systems/#respond Mon, 13 Jul 2020 15:43:35 +0000 http://ww2.alphanet.org/?p=1531 Home oxygen equipment has two essential components: the oxygen storage system and the oxygen delivery system. The first stores oxygen. The second moves the oxygen from the storage container to your lungs. Download Oxygen Delivery Systems as a PDF. Your oxygen delivery options include: Nasal cannulas Transtracheal catheters Reservoir cannulas Pulsed delivery systems Face masks...

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Home oxygen equipment has two essential components: the oxygen storage system and the oxygen delivery system. The first stores oxygen. The second moves the oxygen from the storage container to your lungs.

Download Oxygen Delivery Systems as a PDF.

Your oxygen delivery options include:

  • Nasal cannulas
  • Transtracheal catheters
  • Reservoir cannulas
  • Pulsed delivery systems
  • Face masks
  • Oxygen-conserving devices

Nasal cannula

Most people who use oxygen at home use low-flow, dual-pronged nasal cannulas. The nasal cannula consists of two small prongs connected to plastic tubing. The prongs rest in your nostrils, and the tubing connects to the oxygen source. You get a continuous flow of oxygen that’s been diluted with room air. Flow rate: generally, up to six liters per minute.

Pros

  • Simple and inexpensive

Cons

  • Continuous oxygen flow can dry out the mucous membranes in your nose
  • Delivers oxygen when you’re breathing in and out, so it’s not efficient or cost-effective

Transtracheal oxygen delivery

Transtracheal oxygen (TTO) catheters can continuously deliver a high flow of oxygen. As its name implies, this device is a catheter that’s inserted into the windpipe (trachea) Oxygen enters the windpipe through the catheter.

Pros

  • Reduces shortness of breath while you’re eating
  • It may look better to you than tubes in your nose
  • Delivers oxygen at a reduced flow rate, which saves you a lot of money

Cons

  • Requires a strict self-care routine and someone to help with care and problem-solving
  • Not recommended if you take high-dose steroids every day
  • Many possible complications, especially if the catheter gets dirty

Reservoir cannulas

Reservoir cannulas store oxygen in a small chamber while you exhale, then deliver it back to you when you inhale. They’re often used by people who need higher flow rates to get enough oxygen. Reduced-flow settings can cut the amount of oxygen you use by half.

Pros

  • Simple to use
  • Reliable
  • Don’t cost a lot

Cons

  • Large
  • More noticeable than other systems

Pulsed oxygen delivery devices

These devices may be separate units or built into your oxygen storage device. They deliver a small amount of 100% oxygen when you start to inhale. This brings oxygen to the alveoli, which makes it easier for oxygen to get into your blood.

Pulsed delivery devices sense when you start to inhale. You can pre-set them to adjust to specific demands.

  • Fixed-pulse devices can be set to deliver oxygen at a set rate along with each breath. You can also program it to skip one or more breaths.
  • Demand-pulse devices can deliver oxygen the whole time you inhale, or for part of the time. It can also adjust to your oxygen needs on-demand.
  • Variable-demand devices adjust oxygen delivery based on how you’re breathing.

Each system should have a fail-safe mode, so it can be set to full, constant oxygen flow if the device malfunctions or fails.

Pros

  • Adjust for use during different
    activities, like exercise or rest

Cons

  • Need a doctor’s prescription
  • Can’t use while sleeping

Face mask

Some people need a face mask to get enough oxygen. These plastic masks fit snugly over your nose and mouth.

Pros

Deliver a lot of oxygen

Cons

  • Can be uncomfortable
  • Makes it hard to talk
  • Has to come off when you eat or drink

Paying for home oxygen delivery

The American Lung Association estimates more than one million Americans use home oxygen on a long-term basis. It’s a huge national health expenditure with home oxygen costs adding up to more than 2.8 billion dollars every year. Home oxygen is the most expensive non-surgical treatment paid for by Medicare as part of its Durable Medical Equipment (DME) coverage.

Make sure you know the facts about your insurance coverage.

For more in-depth information on this topic, please visit the Big Fat Reference Guide (BFRG). If you are enrolled in AlphaNet’s Subscriber Portal, you can access the BFRG here.

Download Oxygen Delivery Systems as a PDF.

 

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Reframe Your Thoughts About Oxygen Therapy https://www.alphanet.org/living-with-alpha-1/oxygen-therapy/reframe-your-thoughts-about-oxygen-therapy/ https://www.alphanet.org/living-with-alpha-1/oxygen-therapy/reframe-your-thoughts-about-oxygen-therapy/#respond Mon, 13 Jul 2020 14:46:24 +0000 http://ww2.alphanet.org/?p=1522 Being told that you need oxygen therapy can make you feel uncertain, frustrated, scared, and sad. Some people choose not to use supplemental oxygen, even if their doctor suggests it. However, if you can reframe your thoughts about oxygen therapy, you may have an easier time accepting this life-saving treatment. Download Reframe Your Thoughts About...

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Being told that you need oxygen therapy can make you feel uncertain, frustrated, scared, and sad. Some people choose not to use supplemental oxygen, even if their doctor suggests it. However, if you can reframe your thoughts about oxygen therapy, you may have an easier time accepting this life-saving treatment.

Download Reframe Your Thoughts About Oxygen Therapy as a PDF.

How to reframe your thoughts about oxygen therapy

Old thought:
People will see me as “sick” or “handicapped
Reframed:

Oxygen therapy will help me do more of the things I love to do.

Old thought:
I don’t want to be tied to an oxygen tank wherever I go.
Reframed:

I’ll ask my doctor for advice about small, portable oxygen options.

Old thought:
I don’t want to accept that I have a chronic condition
Reframed:

Accepting my reality is the first step to finding ways to live as fully as I can.

Old thought:
I don’t want to get “addicted” to supplemental oxygen.
Reframed:

I need oxygen, just like a diabetic needs insulin. My doctor will prescribe exactly what I need.

It’s ironic, but refusing to use oxygen therapy may make your fears come true. And, if you’re thinking about a lung transplant, oxygen therapy will be part of your pre-transplant regimen. It is also vital for countering the long-term effects of low blood oxygen levels (hypoxemia), and will help protect your heart.

Think positive!

If your doctor prescribes oxygen therapy , it might help to learn about its many, well-documented benefits. Compare the positive effects with the limitations of feeling sick, tired and out-of-breath. You may find that these benefits outweigh your concerns and fears.

Connect and cope

If you’re struggling with your feelings about Alpha-1 lung disease and oxygen therapy, we’re here to help.

For more in-depth information on this topic, please visit the Big Fat Reference Guide (BFRG). If you are enrolled in AlphaNet’s Subscriber Portal, you can access the BFRG here.

Download Reframe Your Thoughts About Oxygen Therapy as a PDF.

 

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