Starting this month and every month going forward, I’ll be posting the minutes from the UMPC (University of Pittsburgh Medical Center) Severe Asthma Support Group conference calls. The calls are sponsored by the Asthma Institute at UMPC and moderated by Dr Sally Wenzel Pulmonologist and Deborah A. Gillman PhD, Clinical Psychologist.
If you have difficult or severe asthma and would like to participate in the calls, please contact me and I’ll forward your info onto the groups coordinator.
Thanks to everyone for your participation in recent support group calls. Below, please find a summary of highlights from the calls.
Mark your calendars also for November’s support group call “Managing your Weight to Help your Breathing” on Monday, November 25th, 6pm.
Many thanks to Marcy Pitts and Barbara Manna, both Accredited Disability Representatives and members of the National Association of Disability Representatives, each with decades of experience counseling and representing disability applicants. Callers had the opportunity to troubleshoot on their experiences regarding different stages of the process:
SSA.GOV: Social Security Administration
This is the place to start. According to our experts, this is government website that got it right! This is the place for information, forms, and the way to get the application process going.
Resources for Support:
Accredited Disability Representatives are available through either the National Association of Disability Representatives (NADR) or the National Organization of Social Security Representatives (NOSSCR). An important distinction: NOSSCR is an association of lawyers, of varied years of experience. NADR is staffed by representatives of different disciplines and includes many retired SSA staff, including former claims examiners. One does not necessarily need a lawyer to pursue a claim.
Office of Vocational Rehabilitation
Your local OVR—and every state has one—can be an important resource for jobs that will a) not compromise your application and will b) take into account your limitations. This may be especially relevant for folks who cannot afford to stop working but are at risk for earning too much money to be considered for disability. Another advantage of using a representative who is not a lawyer is that your local rep should be a person connected to local resources. Staying local, by finding representatives in your own city, is important.
Paint the whole picture
Our experts counseled applicants to consider their entire functioning, taking into account all physical and mental health factors and how these limit you on a day-to-day basis. The work that goes into the initial application can greatly impact how it is received by the judge.
SEPTEMBER 2013: OPEN CALL
Steroid Response…Steroid Resistance?
Sally Wenzel MD, Director of UPMC’s Asthma Institute, clarified what is sometimes referred to steroid resistance in patients who are steroid dependent. For patients who are on higher and higher doses, likely the immune system that is being suppressed by the steroids begins to fight back, developing new inflammatory pathways. The need for higher doses reflects a poor response, rather than a resistance. She noted, as well, that patients who do not respond to steroids may not have an inflammatory component to their illness. At times, even with an inflammatory component, there may be environmental or chemical interference preventing cells from responding to steroids and this must be addressed. Remember as well that steroids are like band-aids, and that inflammation can come back. Steroids do not cure the vicious cycle.
Unfortunately for many patients, prednisone remains the best treatment option, even with its side effects. Remember, all medications have effects and side effects. Side effects of prednisone, at very high doses, include tissue effects, as the medication can ‘melt’ tissue and bone, leading to risk of infection, for example, a bowel rupture.
However, it is important to make sure you have the right diagnosis. Although lot of patients are given a diagnosis of asthma and severe asthma, different subtypes of this disease are being identified. One of these is Asthmatic Granulomatosis. Others include an overlap with autoimmune disease. These subtypes can be identified by lung biopsies, respond better to other treatments, including Imuran, CellCept and even Methotrexate, and treating physicians should be made aware of this. Although Methotrexate may in the past have been the most popular, according to Dr. Wenzel this immunosuppressant has not been found to be as good as Imuran or CellCept. Research has found side effects including scarring of lung tissue (fibrosis), and liver problems.
Are there long-term damages to the lungs as a result of long-term inflammation? There may be risks of scarring.
Asthma and Gender
Studies of the impact of hormones on asthma show that real differences exit. Boys outgrow asthma, while girls do not. New cases are often diagnosed in adolescence. In females, asthma progresses in adolescence, can improve during pregnancy, but can worsen with menstrual cycles or in menopause. Dr. Wenzel describes working with gynecologists at times to incorporate hormone replacement therapy as needed. Our understanding of the causes is poor, making the study of patients through SARP, over time, a great benefit. For information on SARP, the Severe Asthma Research Program, go to www.severeasthma.org
AUGUST 2013: YOU AND YOUR DOCTOR
How many pulmonologists is too many? As many as you need to find a right one!
Several callers described a process of finding the right doctor, some had seen 3, 4 even 6 pulmonologists until they found the doctor who understood how to treat them. This process can take years, with costs of time (waitlists for new doctors), energy, money, fatigue of travel to new locations, the headache and logistics obtaining and maintaining your medical records. Participants on the call described the frustration of physicians attempting new treatments without confidence, preferring physicians to be honest in saying, “I just don’t know what’s wrong with you.” We discussed how the right provider will offer:
Help you feel comfortable calling as needed, asking questions
Be willing to try new things as new information becomes available
Establish a trusting partnership (especially for patients who are well informed about their illness)
Recognize [you] as a person, not just a patient
Even with the best provider, callers agreed that patients need to be their own advocates. It is important to be proactive in the management of your own illness, documenting episodes of illness, treatment and responses. (RESOURCE: The AARP has forms on-line for how to prepare for a doctor’s visit).
Pitfalls in Doctor/Patient Relationships
The doctor who becomes accusatory when treatment is not going well on a regimen the doctor thinks should work.
Disagreement over course of treatment
A patient presents research and the doctor feels threatened.
Callers agreed that the process of building relationship with new providers can be overwhelming and exhausting, and it can be hard to stay optimistic.
Managing Multiple Providers
It can be a challenge to manage different providers who may have different recommendations (e.g. a local pulmonologist vs. a consulting pulmonologist, a pulmonologist vs. PCP). Callers discussed:
Choosing a doctor to follow
Communicating proactively, ask one doctor to call another—they may do so even if they do not volunteer to do so up front
Ask if email communications would be welcome
The UPMC Asthma Institute Support Group is intended to provide support and information to the group’s participants. The professional guidance available through this group is not intended as a substitute for direct medical or psychological services.