Mini Conference

I think the mini conference was so valuable, in terms of learning about ARDS, having questions answered and the opportunity to ask questions... After facing ARDS, whether it be with a family member or one's self, how often do you have questions that you think about later, or lingering ones that never seem to get answered?

I will post the synopsis that I wrote for the site, but two things really stand out... Dr. Moore was talking about numbers... he said that there are as many as 700,000 cases of ARDS per year in the USA. 700,000! I asked him about that and said I always heard it was at about 150,000 cases. He said that the literature he read showed a range from 200,000 to 700,000. We discussed this later, saying how frightening it would be to let people know that there were this many cases, and obviously, a huge number of deaths, and if one were to admit that a person can get ARDS from seemingly almost anything, well, do people want to know about that?

The other thing was the discussion about when a PT should be in the ICU to evaluate a critically ill patient... since I have heard many things from families, and realize that some smaller hospitals do not have a staff of PTs and/or OTs, I realize that this is a very real issue. And PTs cannot just go into a patient's room, they must be 'invited' or an order must be written for PT.

While I understand that often physicians are forcused for good reason in getting the patient through the day, to the next day, etc... and sometimes it is more difficult to see past that point, it is said over and over again, that the ARDS survivor's reduced quality of life is usually based on their physical limitations rather than anything that has to do with their lungs. If the PT or OT were allowed in to the ICU to evaluate a patient sooner rather than later, maybe that would alliviate some post ARDS physical limitations. And one cannot ignore the cost of PT or OT. it is a real issue that can limit care that is not viewed as acutely needed...

Anyway, here is the synopsis:

At 4:00 PM, the ARDS Foundation's Mini-Conference held at the Deerfield Hyatt, began with the ARDS Slideshow. The first speaker was Dr. Scott Budinger, from Northwestern Memorial Hospital in Chicago, Illinois. Dr. Budinger addressed the most common cause of death in patients with ARDS and discussed the issue of fibrosis in patients with ARDS. He spoke of current ARDS research, including projects with which he was involved.

Next to speak was Dr. Michael Moore, also from Northwestern Memorial Hospital. Dr. Moore addressed both the challenges of treating a patient with ARDS as well as the issues an ARDS survivor might face after surviving the syndrome. Dr. Moore illustrated the phases of ARDS, the post ARDS challenges, including issues of lung function, infections, and the question on everyone's minds: 'Will I get ARDS again?' His talk illustrated the facts, issues, and even the uncertainties when dealing with acute respiratory distress syndrome.

After our dinner break, Steven Sadowsky, Professor at Northwestern University and a physical therapist, spoke about the critical importance of physical therapy for patients with ARDS. He stressed that ideally, the sooner the patient is evaluated by a physical or occupational therapist, the better it is for that patient, even if the patient might be too critical to be worked on. He illustrated, as did Dr. Moore, that many post ARDS complaints that lead to a reduced quality of life, revolve around the patients diminished physical capacity. He offered concrete suggestions to those affected by ARDS to improve their physical capacity and therefore, benefit their future quality of life.

Finally, Pastor Jack Yonts, who is an ARDS survivor, spoke of the power of prayer with regard to his own experiences as well as what he had witnessed with others who are critically ill. As an ARDS survivor who was critically ill for a lengthy period of time, his perceptive is incredibly invaluable to anyone in the ARDS Community. For questions of prayer and grief, he stressed that those of any faith can benefit. Pastor Yonts addressed those times when people find that they cannot pray for themselves, or even when those closest to the patient have difficulty in seeking out prayer, there are others who can take that role. And while Pastor Yonts continues to struggle with certain post ARDS issues, he continues to inspire others.

Each speaker took questions from those in attendance and clearly the importance of being able to learn, to be able to inquire, from these experts was invaluable.

The ARDS Foundation is grateful to all four speakers for their willingness to share their knowledge, and their time, for the benefit of the ARDS Community.