Tag Archives: Medicare

Legal Corner: Open Roads

Posted on August 11, 2014 by Charlie

CVC Patient Advocate Stephanie Posuniak explains the rights of travelers with special needs, both in the U.S. and abroad.

Research suggests that the act of planning and anticipating a vacation boosts happiness, and that a very relaxed vacation boosts mood upon return. If you’re planning a vacation, this article will help you prepare for your journey and understand the laws that protect you and help make travel barrier-free.

Airlines
The Air Carrier Access Act (ACAA) prohibits air carriers flying to and from the U.S., its territories, possessions, and commonwealths from discriminating against passengers on the basis of physical or mental disability. The Department of Transportation (DOT) has issued a rule providing standards of service which air carriers are expected to provide disabled individuals.

The DOT also provides a toll-free hotline to provide consumers with general information about the rights of air travelers with disabilities, respond to requests for printed consumer information, and help air travelers with time-sensitive disability-related issues. The hotline’s hours are 9 a.m. to 5 p.m. EST, Monday through Friday, except federal holidays. Call 1-800-778-4838 (voice) or 1-800-455-9880 (TTY) for assistance.

Requesting information from your airline prior to flight is also a great idea; for example, how will passengers embark, what storage facilities will be available, and what type of lavatory will be on the plane? The Americans with Disabilities Act (ADA) requires that carriers provide this information.

Generally, you’re not required to give advance notice to the air carrier that you have a disability; however, it may be a good idea to do this so the attendants will be ready to assist. There are some situations in which you must give advance notice to the air carrier. For example, when using your FAA-approved oxygen concentrator in-flight, you may need to present a statement from your physician confirming that you can safely undertake the flight.

If you elect to have an attendant on board, remember that the attendant is there for emergency evacuations and is not there for personal services like assisting with eating or accessing the lavatory. The carrier cannot impose a charge for the transportation of a requisite safety assistant.

Cruise Lines and Railways

Domestic cruise lines must also comply with the ADA by taking steps to accommodate passengers with disabilities. Under the ADA, a cruise line must not:

• refuse to provide transportation to you because you have asserted your ADA rights;
• require advance notice of your disability if you are not seeking additional assistance; or
• charge higher fees than other passengers.

The ADA also applies to domestic passenger railways. Under the ADA, railcars must contain:

• 32-inch-width doorways;
• signs indicating priority seats for persons with disabilities; and
• handrails and stanchions for boarding.

Sleeping compartments on railways must allow a person using a wheelchair or mobility aid to enter and maneuver within the compartment.

Service Animals
You don’t need to provide certification for your service animal in the airport as long as you provide “credible verbal assurances” that the animal is a service animal. With that in mind, bring documentation just in case.

The ADA defines “service animals” as those that work or complete a task “directly related to the person’s disability.” Thus, if the animal is solely for comfort or emotional support unrelated to a disability, the animal does not qualify as a “service animal” under the ADA.

When going through airport security, let the security officer know that the animal is a service animal, which means the officer cannot separate you two. While going through the metal detector, you may choose to have your animal go before or alongside you, whichever is better. The officer is trained in how to conduct searches of individuals with service animals and is subject to specific rules. The rules state that the officer cannot intentionally touch your animal without your permission. But you have a duty to assist with the inspection by controlling the animal. You may keep your service animal with you in-flight.

Lodging
If traveling within the United States, the ADA applies to hotels, motels, inns, and other places of lodging built later than January 26, 1993. The ADA requires these structures accommodate individuals with disabilities and includes detailed design requirements. Dwellings subject to the ADA must also provide van-accessible parking spaces depending on the total number of rooms. There must also be at least one accessible route for those using a wheelchair or other assistive devices to approach and enter the building. Depending on the number of rooms, the hotel must also provide roll-in showers.

Health Insurance
Will your health insurance cover you while traveling? If traveling within the United States, regular Medicare rules apply for Part A and B coverage (“original Medicare”). If you have a different type of health insurance than Medicare, check your policy for what’s covered.

If you have an Advantage Plan, the rules differ depending on how long you travel outside the plan’s service area. If you travel outside the plan’s service area continuously for more than six months, most plans will automatically dis-enroll you and enroll you in Original Medicare, if, in the meantime, you do not choose another Advantage Plan. If outside the service area for less than six months, whether the plan will cover you depends on the type of plan you have (PPO vs HMO). Generally, HMOs do not cover services from providers outside the plan’s network.

For Part D, check with your plan, the pharmacy, or call 1-800-MEDICARE for information on whether your preferred pharmacy is on your Part D Plan’s preferred list. The same applies for Medigap policies: see your Medigap policy for more information.

Airlines

Under the ACAA, both domestic and foreign carriers flying to or from the U.S. must:

• permit a passenger to use her FAA-approved portable oxygen concentrator during flight;
• provide assistance with boarding, disembarking, and reaching connections; and
• accept battery-powered wheelchairs, including the batteries.

Cruise Lines and Railways
Cruise ships that dock at U.S. ports must comply with the ADA, and the U.S. ports must also be ADA-compliant. For new port facilities, the operator must ensure that individuals with disabilities, including those using a wheelchair, can use the facilities. Existing ports may have to remove architectural barriers, if possible, and if not, provide reasonable alternative accommodations.

European railways may not be wheelchair-accessible and are not subject to the same United States standards. Contact the local embassy to determine what services and accommodations they may extend.

Service Animals
Foreign carriers are not subject to the ADA and may only accept service dogs. Check with your destination’s embassy. You will also want to carry documentation showing that your animal is a service animal and not a pet. It’s also a good idea to learn the foreign country’s laws and regulations pertaining to leashing or muzzling and your liability if your service animal were to bite.

Traveling with a service animal also requires consideration of cultural and environmental issues. What are the country’s cultural customs regarding your animal? How will the public behave toward your animal? Prepare your service animal by exposing him to the climate, crowds or environment he will experience.

Also be mindful of your animal’s health. What changes in diet, grooming, and personal care will the animal experience? Determine whether the drinking water will be safe and to what parasites or viruses he may be exposed. You’ll also want to get his vaccinations up-to-date and carry a record of that.

Lodging
Depending on your destination, you may need to make arrangements with the target hotel to assure accessibility.

Health Insurance
The Medicare rules become more complex in the international arena. “Outside the United States” means anywhere other than the 50 states, District of Columbia, Puerto Rico, U.S. Virgin Islands, Guam, American Samoa, and the Northern Mariana Islands. Generally, Part A (which predominantly covers in-patient care and home health services) does not cover you while overseas, except in limited situations. For example, if you experience a medical emergency and the foreign hospital is closer than the nearest U.S. hospital, Part A may cover you.

Part B (which covers services such as out-patient doctor visits) does not extend overseas unless in specific situations. For example, Part B may cover medically-necessary services on board a ship within the territorial waters adjoining the land areas of the United States if the ship is six hours or less in distance away from a U.S. port.

If you have a Part D Plan, remember that drugs are not covered if bought outside the United States. If you have a Medicare Advantage or Medigap Plan, check with your plan to see whether you are covered abroad. If you find that you are uninsured or underinsured overseas, you can buy a supplemental health insurance policy specifically for traveling.

Prescription Medications
When bringing medications into a different country, be familiar with the country’s laws on what drugs are legal and what documentation is required. If unsure, contact the embassy.

I hope you notice the mood-boosting effects when planning your next vacation! If you start to feel overwhelmed, remember, as the Chinese philosopher Lao-tzu said, “A journey of a thousand miles begins from beneath your feet.”

Posted in Diseases, Featured, Media Center | Tagged acaa, accessibility, accessible, ada, air carrier access act, airport security, americans with disabilities act, barrier-free, cruise line, department of transportation, disabilities, Disability, dot, health insurance, Healthcare, hotel, in-flight, inn, lodging, Medicare, Medication, motel, oxygen, passenger railway, prescription, service animal, special needs, Travel, traveler, traveling, vacation, wheelchair accessible | Leave a comment

Helpful Resources

Posted on July 22, 2014 by CVCinfo

Partnerships

• LegalShield

Caring Voice Coalition has partnered with LegalShield to offer CVC patients discounted legal plan membership. For a small, flat monthly fee, CVC patients can become LegalShield members, with access to services including unlimited legal advice on any topic, living wills, estate planning, health care proxies, insurance coverage, and identity theft protection. With LegalShield, CVC patients have access to caring, top-quality attorneys from highly-rated law firms across the country at very low cost.

• NeedyMeds Drug Discount Card

NeedyMeds, founded in 1997, is a non-profit information resource devoted to helping people in need find assistance programs to help them afford their medications and costs related to health care.

Patient Associations

• Alpha-1 Foundation
• Chronic Granulomatous Disease
• Complex Partial Seizures
• Cutaneous Lymphoma
• Factor XIII
• Gaucher’s Disease
• Huntington’s Disease
• Idiopathic Pulmonary Fibrosis
• Infantile Spasms
• Lennox-Gastaut
• Myositis
• Narcolepsy
• Nephrotic Syndrome
• Orthostatic Hypotension
• Pulmonary Hypertension
• Sarcoidosis
• Steven-Johnson Syndrome
• Thalassemia Syndromes

Copayment Assistance Organizations

• The Assistance Fund
• CancerCare
• HealthWell
• Leukemia and Lymphoma Society
• NORD
• Patient Access Network Foundation
• Patient Advocate Foundation
• Patient Services, Inc.

Government Agencies and Programs

• BenefitsCheckUp
• Medicaid
• Medicare
• National Institutes of Health (NIH)
• Social Security Administration

Transplant Information

• United Network for Organ Sharing (UNOS)
• National Foundation for Transplants

Posted in How We Help | Tagged Alpha-1 Foundation, BenefitsCheckUp, CancerCare, Chronic Granulomatous Disease, complex partial seizures, Cutaneous Lymphoma, factor XIII, Gaucher’s Disease, HealthWell, Huntington's Disease, idiopathic pulmonary fibrosis, Infantile Spasms, Lennox-Gastaut, Leukemia and Lymphoma Society, Medicaid, Medicare, narcolepsy, National Foundation for Transplants, National Institutes of Health (NIH), NORD, Patient Access Network Foundation, Patient Advocate Foundation, Patient Services Inc, Pulmonary Hypertension, Social Security Administration, Thalassemia Syndromes, The Assistance Fund, United Network for Organ Sharing, UNOS | Leave a comment

Newsmaker Q&A with Karen Anderson, M.D.

Posted on January 7, 2014 by CVCinfo

Karen Anderson, M.D., is director of the Huntington Disease Care, Education and Research Center (HDCERC) at MedStar Georgetown University Hospital in Washington, D.C. Community recently interviewed Dr. Anderson about the challenges of access to care and genetic testing and counseling for Huntington’s disease patients and family members.

What are some of the issues with access to care for Huntington’s disease?

In many areas, the biggest issue with access to care is geography. In most communities, it is hard to find physicians with experience treating Huntington’s disease. Families and patients often have to travel very far to see an HD specialist.

Our center at Georgetown is the first of its kind in the Washington, D.C. metro area. In addition to our monthly clinic at Medstar Georgetown University Hospital, we also have a satellite clinic in Olney, Maryland and have plans to expand to McLean, Virginia in early 2014. This gives patients closer, more accessible care.

The other major issue that limits access to care is insurance. Because the average onset of HD tends to be mid-career, patients often find themselves out of work and uninsured.

The Social Security Disability guidelines for HD have not been updated in over 30 years, and do not include some of the earlier cognitive symptoms that limit ability to work early on. A person with HD may go through many appeals and spend years trying to get disability. Once they are approved for disability, there is a 24-month waiting period for Medicare benefits.

Our center joins the Huntington’s Disease Society of America (HDSA), the major patient advocacy organization for HD in the United States, to lobby for the Huntington’s Disease Parity Act, which would address these issues for many.

How can caregivers and patients overcome the challenges of not having close access to experienced care for Huntington’s disease? 

They can start by reaching out to their area’s HDSA social worker. The HDSA website keeps a list of community physicians online that have been known to see people with HD. Both the list of social workers and doctors are available at HDSA.org.

If there is no one near them, then the best recommendation is to find a physician in the community that is willing and able to take the time to work with the patient. HDSA published “A Physician’s Guide to the Management of Huntington’s Disease” meant to assist in these situations. This book is available free. It is in PDF form online at HDSA.org/publications, or the National HDSA office can be contacted to send a copy. HDSA social workers, or a social worker from an HD Center are also available to help provide education and services to help with the care.

Who should be tested for Huntington’s disease, and when?

Being tested for Huntington’s disease is a very personal decision. Individuals will choose to get tested for a variety of reasons, from family planning, to planning for the future, to confirming that symptoms are in fact HD.

A physician may recommend testing to confirm symptoms, especially when someone has no known family history of HD, or they have a family history, but no one is their family has ever had confirmatory testing.

What does the test for Huntington’s disease involve?

The test itself is a simple blood test, but it does need to be sent out to a specialty lab; however the process to get tested is a little more involved. If a person is pre-symptomatic there will be a series of visits that include meeting with a genetic counselor and social worker, as well as evaluations from a psychiatrist and/or a neurologist. In some cases memory testing will also be recommended.

It is important for the person choosing to be tested to be well informed by the care team about HD and have time to process their decision before ultimately being tested. Once someone receives genetic test results, the information cannot be taken back.

For someone with suspected HD symptoms, testing is generally coordinated through his or her physician. Consultation with a genetic counselor can also be helpful in these cases.

What are some of the issues with family communication about Huntington’s disease and genetic testing, and what strategies might be helpful in addressing those issues?

In past generations, families were not always open about the family history of HD, so when someone started to show symptoms, it was a shock. It is good to encourage patients to be as open within their families as possible.

It is also good to have a plan before going through the process, or receiving results, so that you know, and your family knows, how, or when, you will choose to share those results. It is usually better not to surprise others with this information.

What type of counseling should those being tested for Huntington’s disease and their family members have?

The person being tested and their family should receive genetic counseling. The person being tested should also see a counselor or therapist, or at least make a connection with one, so that they have the extra support during that time. It can also be very helpful for a family to go to counseling together to address some of the issues.

Why are both care of the whole person and care of the family essential with treating Huntington’s disease?

It truly ends up being a family disease. Because of the average age of onset, HD can really turn a family upside down. A spouse/partner may be working full–time, taking care of the children, and being a caregiver.

If we don’t make sure that spouse/partner is taken care of, it can be even more detrimental to a family. This is why our center motto is “Cura Familia”—“Care of the Family.”

Because it is a genetic disease with a 50 percent chance of inheriting it from a parent, often times the caregivers for the person with HD are themselves at risk. For this caregiver that is also at risk, it can take a huge toll on them to watch family member after family member suffer from HD and know that they could be next. By treating the whole person and the whole family, our center is able to provide better care.

What type of Huntington’s disease research is the Huntington Disease Care, Education, and Research Center (HDCERC) doing?

We are a member of the Huntington Study Group (HSG) and are currently a site for their FIRST-HD trial. We hope to begin enrolling people in this study very soon. We also are an Enroll HD site, a longitudinal, worldwide observational study, and hope to being enrolling patients in this study soon too.

Our team also studies patient-reported outcomes—the factors that matter most to patients when looking at potential treatments.

How did your interest in Huntington’s disease develop?

I have always wanted to work with people who have neurological disease. I find the stories of HD families are incredibly compelling and often courageous.

Because the symptoms are so diverse and severe, clinicians can make a positive difference for these families, who are often told there is nothing that can be done for them. This is completely untrue; there is so much that can be done to manage the symptoms and support the families.

HD is also entering a phase when the clinical trials to find treatments are very exciting and novel. I can think of no higher privilege than to work with these incredible families over multiple generations.

CONTACT INFORMATION
MedStar Georgetown University Medical
Center Huntington’s Disease Care, Education
and Research Center (HDCERC)
3800 Reservoir Road, N.W.
Pasquerilla Healthcare Center (PHC)
Washington, D.C. 20007

Website: http://neurology.georgetown.edu/research/hdcerc
Appointment line: 202-444-0816

 

Posted in Diseases, Featured | Tagged blood test, caregivers, genetic counseling, genetic testing, genetics, HDCERC, HDSA, health insurance, Huntington's, Huntington's Care, Huntington's Disease, huntington's disease society of america, Karen Anderson, Medicare, MedStar Georgetown, patients, physician's guide to the management of huntington's disease, social security disability, specialist | Leave a comment

Recognizing, Avoiding, and Reporting Health Care Scams

Posted on June 21, 2013 by CVCinfo

Health care scams are on the rise and can take many forms—in person, over the phone, via mail and online. New government programs have recently been put in place to help prevent, detect, and punish such scams.

However, it’s important to remember that con artists can be very creative in coming up with new ways to defraud their victims, and extremely persuasive, catching even the savviest consumers off-guard.

Here are some common health care scams to look out for, along with tips for protecting your personal information, and reporting health care fraud.

The Affordable Care Act

The Federal Trade Commission, the Better Business Bureau, and AARP warn about scams that claim association with the Affordable Care Act (ACA) and its Health Insurance Marketplace. Scammers have been taking advantage of confusion about health care reform and calling claiming to be government representatives issuing mandatory new national medical cards.

If you get a call from someone purporting to represent Medicare or the government, hang up immediately. Don’t rely on caller ID to correctly identify the caller; con artists can falsify caller ID numbers.

It’s important to know that:

• There is no card associated with Health Insurance Marketplace Affordable Care Act enrollment.

• There is no new Medicare card.

• You can’t sign up for the new Health Insurance Marketplace under the Affordable Care Act until October 1, 2013.

Scammers try to convince you to act now, says Tracey Thomas, Attorney, Division of Marketing Practices, Federal Trade Commission, in order to get your money before you have time to stop and think.

“So remember that date: October 1, 2013. That’s the first time anyone, anywhere can sign up for health insurance through the Health Insurance Marketplace under the Affordable Care Act. Anyone who claims to be able to enroll you sooner is trying to scam you,” advises Thomas. To report anyone who claims to be able to sign you up sooner, go to www.ftccomplaintassistant.gov.

For up-to-date information on the Affordable Care Act and the Health Insurance Marketplace, go to: www.healthcare.gov/index.html

Other Common Health Care Scams

The Department of Health and Human Services, the Department of Justice, and the FBI warn that scammers are engaging in the following types of health care fraud:

• Approaching their targets in public areas and offering free services, groceries, or other items in exchange for Medicare numbers.

• “Rolling lab” schemes: Scammers offer unnecessary and sometimes fake tests to individuals at health clubs, retirement homes, or shopping malls and bill them to insurance companies or Medicare

• Scammers call claiming to be conducting health surveys and ask for Medicare numbers

• Scammers offer medical equipment or service for free to individuals and claim that they only need your Medicare number for their records. Insurers are then charged for products that were not needed and/or may not have been delivered.

Next week, look for Part Two of “Recognizing, Avoiding, and Reporting Health Care Scams” on www.caringvoicecoalition.org. We’re here to help!

Posted in About Us, Diseases, Featured | Tagged AARP, Affordable Care Act, Federal Trade Commission, Health Care Scams, Medicare, scams | Leave a comment

Health Care Scams, Part II

Posted on June 20, 2013 by CVCinfo

Top Tips from the Experts

With major changes in health care prompted by the Affordable Care Act, it’s easy to get confused. That why it’s more important than ever for patients, providers, and caregivers to know how to recognize health care and health insurance scams. We’ve included tips from experts on combating and reporting fraud, including helpful questions for identifying scams.

In CVC Community magazine’s summer issue, CVC Patient Advocate Stephanie Posuniak examines the growing health care role of patient navigators in the article “On Your Behalf.” In the article excerpt below, Posuniak outlines ways to help determine whether a patient navigator is legitimate.

How Can I Be Sure a Patient Navigator is Authentic?
Some organizations or individuals may pose as authentic patient navigators when, in fact, they intend to defraud you. How can you tell the difference between a real patient advocate and a con artist?  For official navigators (who assist with the Exchange), the first place to go is your state’s Exchange website, which should have a list of approved official navigators.

If you do not have access to the internet, contact the call center associated with your state’s Exchange.  For unofficial navigators (who are not directly associated with the Exchange), you can also consult your local Better Business Bureau’s website to verify credibility.

If you do not have access to the internet, here are five questions to ask before commissioning a patient navigator:

1) Who initiated the contact? Patient navigators rarely cold call individuals; so, be wary of external phone calls indicating that you must obtain a “national medical card” or the like.
2) Is the navigator willing to send me additional information about its organization?  Legitimate businesses understand the need for more information and will be happy to comply.  A navigator who does not want to send information about itself is suspect.
3) Will the navigator let me call her back? A patient navigator will not decline this request.  If the person tries to threaten or pressure you, something is wrong.
4) Has my doctor heard of this organization? Most health care providers are aware of well-known patient advocacy organizations.

For more on patient navigators, see Posuniak’s “On Your Behalf” in CVC’s Community magazine’s summer issue, out soon.

Preventing Medicare Fraud

To help stop Medicare fraud, the Department of Health and Human Services and the Department of Justice warn you to be suspicious of doctors, health care providers, or suppliers who:

• Ask for your Medicare number in exchange for free equipment or services and/or for “record-keeping purposes”
• Tell you that tests become cheaper as more of them are provided.
• Advertise “free consultations to people with Medicare
• Call or visit you and say they represent Medicare of the federal government
• Use telephone or door-to-door selling techniques
• Use pressure or scare tactics to sell expensive medical services or diagnostic tests
• Bill Medicare for services you never received or a diagnosis you do not have
• Offer non-medical transportation or housekeeping as Medicare-approved service
• Bill home health services for patients who are not confined to their home, or for patients who still drive a car
• Bill Medicare for medical equipment for people in nursing homes
• Bill Medicare for tests you received as a hospital inpatient or within 72 hours of admission or discharge
• Bill Medicare for a power wheelchair or scooter when you don’t meet Medicare’s qualifications

For more information on common scams and identity theft, go to www.stopmedicarefraud.gov/preventfraud/scams-identity-theft

FBI Tips for Avoiding Health Care Fraud or Health Insurance Fraud

The FBI’s Common Fraud Schemes website www.fbi.gov/scams-safety/fraud
provides information and tips on avoiding some of the most common scams that the FBI investigates, including health care fraud, health insurance fraud and identity theft. The FBI advises:

• Never sign blank insurance claim forms.
• Never give blanket authorization to a medical provider to bill for services rendered.
• Ask your medical providers what they will charge and what you will be expected to pay out-of-pocket.
• Carefully review your insurer’s explanation of the benefits statement. Call your insurer and provider if you have questions.
• Do not do business with door-to-door or telephone salespeople who tell you that services of medical equipment are free.
• Give your insurance/Medicare identification only to those who have provided you with medical services.
• Keep accurate records of all health care appointments.
• Know if your physician ordered equipment for you.
• Don’t give your personal information, such as your name, Social Security, Medicare, or credit card numbers out over the internet, or to anyone who calls you, or comes to your home. Give personal information only to doctors or other Medicare approved providers.
• To find out if a provider is Medicare approved, call 800-MEDICARE (800-633-4227); 877-486-2048 (TTY users)

To report suspected Medicare errors, fraud, or abuse, contact either:

HHS Office of Inspector General

Call: 800-447-8477
TTY: 800-377-4950
Online: Report Fraud Online

Or

Centers for Medicare & Medicaid Services
Call: 800-633-4227
TTY: 877-486-2048

Senior Medicare Patrols:
The Senior Medicare Patrol (SMP) are highly trained volunteers who show Medicare and Medicaid recipients how to protect against, detect, and report fraud, errors, and abuse through outreach, counseling, and education.

For information on the Senior Medicare Patrol, go to www.aoa.gov/AoA_programs/Elder_Rights/SMP/index.aspx

Most Wanted Health Care Fraud Fugitives

The Office of Inspector General (OIG)  is seeking more than 170 fugitives on health care fraud and abuse related charges. Click https://oig.hhs.gov/fraud/fugitives to view OIG’s Most Wanted Health Care Fugitives, as well as those recently captured.

Posted in About Us, Diseases, Featured, Uncategorized | Tagged AARP, Affordable Care Act, Federal Trade Commission, Health Care Scams, Medicare, scams | Leave a comment

Lee Ann’s Story

Posted on September 17, 2012 by CVCinfo

It was the third week that my ankles had been swollen consistently. That Wednesday, May 16, 2012 my mother and husband convinced me that an ER trip was necessary. The swelling had come and gone over the past 3 months. As a 41 year old mother of two teenagers, an asthmatic and someone who was overweight, I chalked the swelling up to being heavy. The shortness of breath had been there for years and again, I chalked that up to being heavy. Then I started to notice chest pain with the swelling and shortness of breath. That was when I realized that this might be a little more serious than I thought.

At the ER, the initial thought was that I had had a heart attack. Then blood clots then eventually, the final diagnosis… Pulmonary Hypertension. The language was not new to me or my family as my niece was born two short years ago with PH.

After a whirl of tests and a week-long hospital stay, I was discharged with little knowledge other than what I had learned from my niece. A Cardiac Cath was done and with this I was introduced to my now Pulmonary Doctor whom I love. Now the diagnosis was worse. Pulmonary Hypertension and Pulmonary Veno-Occlusive Disease.

I was told that after 5 years I would have a 50% chance of living without a double lung transplant. My world just stopped. Here we were a family of four making good money and living a great life. I had to quit my job and file for Social Security Disability. I had to deliver the news to my husband and boys that I was going to die.

Here it is four months later; I have had an open lung biopsy and have been taking medications that make my symptoms worse. The money situation is so bad, we’re making enough barely struggle by, but not enough to live. I was approved for disability but have a $5000 out of pocket deductible with my husband’s insurance. Not to mention copays and script costs. Disability wont start until December 26, 2012 and Medicare wont start until May 2014.

Stress is bad, I find myself crying all the time. I try to put on a happy face but it is so hard to ask for help, watch my husband come home tired from work and do housework and cook because I cannot.

Everyone keeps saying it will be ok, my question is ok for who? I have not yet learned to deal with my illness and pray that soon I will see that I can survive.

Thank you Caring Voice Coalition for all you do everyday.

Posted in About Us, Diseases, Events, Featured, How We Help, Media Center | Tagged CVC, Medicare, Pulmonary Hypertension, Pulmonary Veno-Occlusive Disease, Shortness of Breath, Swollen Ankles | 8 Comments