Practical Advice

I received an e-mail regarding next week’s ILD Support Group meeting. Dr. Michelle Milic, who spent time with us in the past talking about her hopes for a pulmonary symptom management clinic and program and was obtaining input as far as what such a clinic or program should look like.

The focus of this meeting will be to continue the discussion about symptoms, daily living, worries both practical and existential associated with living with ILD, as well as the things that make life better.

Oh, I have so much to say. Looking back on my experiences dealing with this disease on a personal, professional, financial and medically has been a learning experience. I will think about the questions above and report back.

What comes to mind is practical advice I would give to others who are suddenly confronted with a bad diagnosis:

• Document everything. The memory fades. Four years later, the lawyers what to know when a certain test happened or when a specific drug was introduced. I called it a lung history document. It listed every doctor appointment and a brief description of the visit. I also included the dates of all medical tests. 
• If a lawsuit is involved (Worker’s Comp, for example), realize that  phones and cell phones are probably bugged. Also, it is common to have a person followed for 3-4 months. Every day. Everywhere. We realized a GPS was on our car. They are sneaky. Give no information to anyone phoning the house. They tried so many tactics to get information out of me. They also went through our garbage.
• If a patient is prescribed prednisone for the first time, there needs to a referral to meet with a nutritionist to avoid gaining the 30-60 pounds so many of us have gained that first time.
• A social worker would have been helpful. At the county hospital, one is assigned to help people through the paperwork and were almost advocates to help patients through the medical process. It would be great for each new patient to have a meeting or two with a social worker. There are deadlines for SSI Disability and State Disability applications as well as Long-Term Disability Insurance. A social worker could help with these dates and processes.
• Pulmonary rehab. It is a must for everyone with a lung disease. It should be considered part of the treatment.

Those are the first things that come to mind. While going through my computer files, I found part of an application that really spoke about how our lives were so limited during the first few years of my diagnosis. I had forgotten. It was amazing to read and to realize how far I have come physically. It will be in tomorrow’s blog.