Apply for a 2012 Lantos Award!

Colleen Brunetti, a PHA Generation Hope member and blogger, received a 2011 Lantos Award to produce this video, which explains the purpose and value of PHA’s email groups (like Generation Hope!).

Do you have your own creative idea and just need some funding to make it happen? PHA is now accepting applications for the 2012 Lantos Awards! Apply today and PHA may award you up to $5,000 to build your PH awareness project or enhance services for PH patients. Visit www.PHAssociation.org/LantosAwards for more details!

The Patient and Doctor Relationship in Pulmonary Hypertension Care

I believe that the patient and doctor relationship is an important thing to consider when treating pulmonary hypertension. When a patient and doctor communicate well the patient receives better care.

I am pleased to say that in 18 years of having this disease, the relationship between myself and my PH doctor has been great. I was diagnosed in 1993. The person that initially diagnosed me was a pediatric cardiologist in Miami, Fl. This cardiologist then referred me to a pulmonary hypertension specialist in New York. I was under the care of that specialist for 13 years until she retired. Then I switched to another specialist who practices at Duke Medical Center in North Carolina. My doctor from North Carolina has been my pulmonary hypertension doctor now for 5 years. I have been blessed to be under the care of only two doctors over the course of having this disease. Both doctors have taken excellent care of me and have played a large role in the success of controlling my disease.

The first step in having a patient and doctor relationship that will ensure you are receiving the best medical care is to verify that you are seeing a doctor who is knowledgeable about PH. In general, this doctor is either a pulmonologist or a cardiologist. Here are some questions, from www.PHAssociation.org, that you should be asking the doctor who is primarily responsible for treating your pulmonary hypertension:

1. Are you part of a dedicated PH clinic that includes other PH-treating doctors?
2. Do you have at least one nurse who works with patients on PH-specific medications?
3. How many PH patients do you currently treat?
4. What PH therapies do you prescribe, and how many patients are on IV prostacyclin? (While you may ultimately be placed on a different therapy, a center’s familiarity with treating patients on the most complex PH therapy is a good reflection of their level of PH expertise.)
5. Does your center perform right heart catheterization with vasodilator testing, and who does the catheterizations?
6. Do you conduct clinical trials on PH medications?

The next step in ensuring that you have a relationship with a doctor that will improve your medical care is managing your doctor visits. The time during a doctor’s appointment should include the doctor talking and you listening and you talking and the doctor listening. Go to the visit prepared with a list of side effects and symptoms that you have been experiencing. Also, if you have any questions write them down ahead of time and do not leave the appointment until those questions are answered best as possible. Personally, I like to have a way to directly contact my doctor not just during a visit, but also from home. That way I can ask them questions or notify them of problems when they arise.

Thirdly, patients have a responsibility to keep their doctors informed. If you are admitted to a hospital, make sure they know about it. If you are having difficulty getting prescriptions filled, make sure they know about it. If you are experiencing stressful events in your life, make sure they know about it. Stress can largely affect your PH. If you’re using other therapies (such as vitamins, chiropractor, acupuncture, etc.), make sure they know about it. Doctors have hundreds of patients to care for, so it is in your best interest to take primary responsibility and communicate well.

I have had the privilege of watching the medical field learn more about this disease as time progresses. Several clinical trials are underway and many have been completed with findings that help us understand how to better treat patients. I am thankful that the number of well-educated PH doctors is bountiful. I strongly believe that I will see a cure within my lifetime. Make sure that your primary PH doctor is one of these doctors. Having a good relationship with this doctor can lead to you having more good days and feeling better overall.

Hold fast, a cure is on the way!

Life Changes and Insurance

Change: the one word that I would use to describe my life at this moment. I recently stopped working, moved, and went from living with my husband and daughter to living with my parents and daughter. All this has happened because my husband joined the Army. He is now away for training and will be for several months.

Along with his job change comes an insurance change. With several changes, it is crazy to think that the lead source of my anxiety is my fear of not getting proper medical care. The Army will provide us with healthcare, however with Pulmonary Hypertension there is a lot that needs to be considered. Patients have specialty medication and specialized doctors for treatment. Many times the transition of prescriptions and prolonged wait times for approvals can delay the shipment of medications.

We have taken several steps to proactively prevent a break in therapy and insurance. I believe being proactive is the best way to keep an insurance change from negatively affecting my health. Below you will find advice on steps I recommend if you are facing an upcoming insurance change:

1. Order your monthly supply of medication as close together as you can a couple months previous to the insurance change. This way you have a supply of extra medications on hand incase it takes long to get your prescriptions approved.
2. Know all information about the insurance benefits you will be acquiring. Amount deducted from paycheck, maximum lifetime benefit, co-payments, and other expenses such as these because this can help you from incurring unexpected bills.
3. Understand your current insurance’s policy on obtaining COBRA if necessary. COBRA is a federally mandated insurance program that gives some employees the opportunity to continue insurance coverage after the qualifying employer leaves employment. You are by law allowed a 60-day grace period to elect COBRA. You also have to pay per calendar month so be wise about the day you elect the insurance.
4. Find out if your current PH specialist will accept your new insurance. If they do not, it might be necessary to find a different PH specialist that accepts your new insurance.
5. Click here for more information on how to work with your insurance company. This is a great article that was recently posted on the PHA website. It could help save you many phone calls and insurance headaches.

It is a victory to be alive long enough that life changes occur. The downside is that some of these life changes lead to the hassle of dealing with insurance changes. Marriage and obtaining a new job are a few of the milestones that can help us realize how we have overcome this disease. No matter the change, from a patient’s perspective, life will always be different than it is for someone that doesn’t have a life threatening illness. At times it can be overwhelming to learn how to navigate the insurance jungle. I think the best way to cope with those frustrations is to acknowledge that this disease makes all aspects of life different and not just our physical health.

Hold fast, a cure is on the way!