Frequently Asked Questions

1.  Visit The LAM Foundation website and read about the current studies being conducted at the NIH.
2.  Contact Tat’Yana Worthy [the Research Nurse Specialist] worthyt@nhlbi.nih.gov to learn more about specific research that you can contribute to.

Location:
LAM Team NHLBI, Critical Care Medicine, and Pulmonary Branch
National Institutes of Health, Bldg. 10, Room 7N222
10 Center Drive, MSC 1590
Bethesda, MD 20892-1590

1. Research Nurse Specialist (Tat’Yana Worthy): This person will handle all things related to the research protocol, as it relates to eligibility, enrollment, and submission of medical orders, etc.
   Tat’Yana Worthy
   Email Address: worthyt@nhlbi.nih.gov
   Phone Number: (301) 496-3632
2. Patient Care Coordinator: This person will handle all of the logistics of the visit (scheduling tests, disseminating the schedule, coordination of travel, lodging, mileage, and meal vouchers).
3. Nurse Practitioner (will be assigned at your visit): This person will provide clinical care during your visit, medical orders, and study management.
4. Dr. Moss’s Tuesday Evening Meeting:
   Typically, Dr. Moss hosts a meeting on Tuesday nights at 5:00 PM. Ask your Nurse Practitioner to confirm the meeting while you are there. This meeting covers general questions around the LAM research being done at NIH.
   *Individualized patient-specific questions can be asked during your discharge conference before you leave.

Important Emails to Save

You will receive three important emails. Please be sure to check your spam folder regularly to ensure you receive them.

The “Greetings” email

• This email will be sent from the NIH Research Nurse Specialist after your initial intake phone call, confirming your eligibility and starting the NIH process. This email contains a scheduled date for your appointment, along with important information, including protocol consent documents.
• If you need to check your schedule or coordinate with your family before confirming, then the “Greetings” email will be sent after the NIH Research Nurse Specialist confirms the date you selected. o
• This email will also include a checklist of actions and documents needed prior to your scheduled visit.

The “Admissions” email 

• This email is sent from the NIH Patient Care Coordinator, 2 weeks prior to your scheduled appointment. This email contains information regarding your travel arrangements, lodging, meals, and schedule of events for your visit. A suggested packing list will also be provided.

The “Protocol Consent” email

• This will be sent by the NIH Research Nurse Specialist, 1 week prior to your visit to complete the consent process. The NIH Research Nurse Specialist will call you to explain the three protocol links in your “Greetings” email and go over any questions or concerns you may have. You will sign the consent forms while you are on this phone call. If for some reason you do not hear from her please call her at: (301)496-3632.

Check-List for NIH:

Appointment confirmation

Travel arrangements and lodging confirmation

Schedule of events secure email

Make sure the following items are packed:

• A note pad, pen, and prepared questions for the Clinical Trials Team.
• Walking shoes and comfortable exercise clothes.
• A printout of your “Admissions Email” sent by your Patient Care Coordinator.
• Create a “Medical Resume” with Family History
• Toiletries, comfortable clothing. Similar packing for a 4–5-day vacation. You will notice patients in exercise clothes rather than the stereotypical hospital gowns.
• Medications: Pack all your medications.

Supplemental oxygen is a medical treatment that manages and provides extra oxygen for people with hypoxemia (shortness of breath) and breathing difficulties.

When is the right time to start talking with your physician about Supplemental Oxygen?

• • If you are regularly feeling shortness of breath while doing simple tasks. For example: Climbing stairs or walking up an incline
  • Experiencing fatigue, irritability, confusion, morning headaches
  • Some patients may not experience specific symptoms even when without sufficient oxygen.

What are the potential benefits of using supplemental oxygen?

• • Reduces breathlessness
  • Increases one’s ability to stay in an active lifestyle
  • Reduces stress on other organs

Oxygen levels:

• Your physician will test your need by measuring your oxygen saturation level while you are at rest, walking or exercising, and/or during sleep.

6-minute walk test:

This test is commonly used to determine whether you need supplemental oxygen when you are active. During this test, performed at a physician’s office, you will walk 6 minutes while your oxygen levels are monitored with an oximeter.

• Your oxygen level and blood pressure will be taken before you start the walk.
• Readings on oxygen levels are recorded throughout the test and when the walk is completed.
• Supplemental oxygen is generally needed when a patient’s saturation falls under 88 on a pulse oximeter.

• It is important to maintain communication with your physician, letting them know of any symptoms you are experiencing to identify potential supplemental oxygen needs more easily. Make sure you talk with your physician about your lifestyle to decide which equipment will suit you best.
• Your physician will order the appropriate tests. Be sure to look at what your insurance covers and have this discussion with your physician prior to testing.
• Your physician will provide you with a prescription and will typically contact a company that takes your insurance. The referral is often general, so a discussion with your provider on your specific needs, including travel, would be helpful. Oxygen companies can differ in what they are able to accommodate, so choosing the right one up front is important.

Oxygen suppliers and insurance companies are to provide:

• The recommended oxygen system, including equipment and disposable supplies ( ie., nasal cannulas, tubing, and/or oxygen concentrator humidifier bottle).
•  24-hour emergency service for equipment malfunctions or power outages.
• Education on the proper and safe use of your equipment. When they come to your home ask them to show you how to work the equipment.
• The oxygen supplier will verify your insurance and bill your insurance provider.

When equipment is delivered, ask the delivery setup person to talk you through the basics of maintaining equipment and how to use. They are supposed to check equipment function periodically.

Pulse vs. Continuous Flow

Pulse flow delivers oxygen based on the wearer’s inhalation, but it does not provide oxygen for every breath, meaning the actual amount received may be less than expected. Additionally, pulse settings do not equate to liters per minute, and oxygen delivery is not instantaneous. In contrast, continuous flow provides a steady, uninterrupted supply of oxygen.

Oxygen Systems

There are two types of oxygen systems: In-home stationary unit and a portable system for travel outside the home.

Stationary Unit / Home Concentrators

• Pulls oxygen from the air in the room to produce concentrated oxygen delivered through the oxygen tubing.
• Equipment typically stays in the room where it is set up. The concentrator puts out heat and loud noise.  The long tubing provided by the supplier will allow you to move around your home.
• The cost of electricity to run an oxygen concentrator is not covered by insurance. This expense is tax deductible in some situations (ask a tax professional to determine your situation).
• All stationary units are continuous flow units. They are up to 5 liters/minute continuous or up to 10 liters/minute continuous.
• When traveling, you can carry this with you, but it is very heavy, weighing between 30 and 50 lbs.

Portable Units

Compressed gas tanks

• Green and Silver (aluminum) tanks filled with compressed oxygen gas.
• Tanks can vary in size. Choose the size that will work best for your lifestyle.
• A regulator will be provided, which will attach to an oxygen tank, allowing the patient to set the desired flow rate while in use. Each regulator has a control knob to set the oxygen flow rate and a content gauge to show you how much oxygen remains in the cylinder.]
• Is your body able to handle a backpack or shoulder bag to be hands-free? Tip: Having a strong back and keeping up with exercise ensures your ability to carry.
• Larger E tanks that are pulled on carts are difficult to maneuver on uneven surfaces, difficult to load in your car, and don’t allow you to be hands-free.
• Some compressed gas tanks can be filled at home with a concentrator filling system. These are special tanks that only work with a home-fill concentrator system.
• If a supplier only provides a home-fill system, they provide limited tanks. Negotiate with the supplier to provide more tanks.
• If preferred, an oxygen-conserving device (OCD) regulator can be attached to an oxygen tank and can help patients conserve the amount of oxygen they are using in place of a traditional oxygen flow regulator. It optimizes oxygen delivery by releasing oxygen only during inhalation and prolongs the duration of the oxygen supply. A prescription is required to use an OCD.

Portable Oxygen Concentrators (POC)

Typical POC’s are pulse only (pulse flow delivers oxygen in short, intermittent bursts that are synchronized with the patient’s breaths). There are limited POC’s that have continuous flow as an option.

• POC’s run typically on rechargeable batteries. Battery life depends on the size. Generally, the smaller the unit, the lower the oxygen output and the shorter the battery life.
• POC’s can be recharged via a wall plug or car adapter.
• Most pulse POC’s are not cleared for sleeping.

Oxygen Cannulas

Oxygen cannulas come in different lengths and provide different prong types (soft prongs, long prongs, and short prongs).

• Prong types are a matter of personal preference, allowing you to choose the option that best fits your nose, whether long or short. Soft prongs offer enhanced comfort and are less likely to cause irritation.
• Oxymizer Pendant: This device is optional. With a standard cannula, oxygen flows continuously during both inhalation and exhalation, resulting in wasted oxygen during exhalation. The Oxymizer Pendant, however, captures the oxygen released during exhalation in a reservoir disc and delivers it with the next breath. This provides a higher concentration of oxygen than the flow rate setting alone would indicate. As a result, users can achieve the same oxygenation at a lower flow rate, extending the duration of their oxygen supply.

Make sure to include enough batteries to get you from home, through the airport on both ends of your flight, and to your destination.  Using a wheelchair through the airports could help you save battery power.

Source: https://runningonair.net/flying

• Avoid flames, sparks, cigarettes, matches, lighters, gas stoves, etc.
• Secure oxygen tanks to prevent them from falling.
• Do not store tanks near heat sources or in direct sunlight.
• Do not use cracked or broken tanks.
• Place the stationary concentrator in a well-ventilated location.
• Do not store items on top of the concentrator.

• Running On Air– A Non-Profit organization that focuses on advocacy and education around supplemental oxygen and lung diseases.
• American Lung Association
• Pulmonary Fibrosis Foundation– Oxygen Therapy Information
• Medicare Patients’ Oxygen Rights
• American Thoracic Society
• SOAR Act– Advocacy: Oxygen Reform Bill to ensure supplemental oxygen is patient-centric, ensure access to liquid oxygen for patients whom it is medically necessary, creates a statutory service element to provide adequate reimbursement for respiratory therapists, and ensures predictable and adequate reimbursement, and protects against fraud and abuse.