INTEGRIS Jim Thorpe Rehabilitation

LVAD Support Group

We have had two Left Ventricular Assistive Device (LVAD) support groups since September 2011 and what an incredible turn-out we had with friends and family from all across our state and region, including Kansas and Arkansas. Not only did our patients and family/friends show up for our support groups, but we had the clinical and administrative staff of the INTEGRIS Advanced Cardiac Care Center attend. Our group facilitators are Susan Shepard with INTEGRIS Jim Thorpe Rehabilitation Hospital and Margie Combs-Summers with INTEGRIS Baptist Medical Center.

Since March of 2008, the Center of Excellence, IACC, implanted 120 pumps with 74 currently running. Dr. Long welcomed group and stated that our members had “hearts of gold” and were "pioneers" in many, many ways and proposed a new initiative for members to consider. He shared his vision to build a regional heart failure network and to connect people with needed resources regardless of where they live. He shared that his team desired to use technology for patients to begin to communicate with medical professionals in their own home environment. This heart failure network would include the patients across the continuum of care that are seen by multiple professionals, including home health, primary care physicians, regional cardiac specialists, and advanced cardiac centers of excellence like we have at Baptist Medical Center. This model would address heart failure patients' medical and psychosocial needs at different stages of the disease.

He shared the value of a personal health record (PHR) where patients who had computers could use a website to upload medical information (including medications, lab values, family history, and allergies) that could be shared with their physicians from any location in the world. His team would teach the group members who had interest in this program to build and use this PHR to better their own health care. This initiative would allow our LVAD group members to help future patients in the hopes to educate individuals about heart disease earlier in the process. Group members reinforced the importance of increasing our communities' awareness of heart disease and that preventive measures were crucial. Many members reported that because of their LVAD, some of their younger family members are receiving medical intervention earlier for their own cardiovascular wellness.

After the introduction, members shared an 'uncommon' person or event in their life that shaped them into the person they are today. Not surprisingly, most shared their recent experience with receiving an LVAD and how that technology/device changed the course of their lives.

Some of the comments shared are as follow:

Pam G. - "We need to be ambassadors for LVAD. We are living and having a good life."

Craig J. - "My defining moment was having the LVAD. Each day you feel stronger. So many medical people don't know about LVADs. This year was the first time in two years since I was able to attend an OU football game."

David B. - "I went to my grandson's football game"

Brenda B. – “I have an 11 year old son and have to be active. I went to Hawaii this year and walked on the beach. Life is so short and we shouldn't be afraid to do things."

Mark and Vicki M. – “We have to increase awareness of heart health. We are educating our grandkids about LVADs."

Margie C. - "I had to overcome my own illness so I can take care of you all in the hospital. You can do what you once did, it just takes time."

Virgil and Vivian R. - " We are excited to have a support group here. INTEGRIS Health has given our family so much by extending Virgil's life and motivating us to let others know an option they may have not heard of just might work for them. We plan to stay in touch with you and hope to be included in the news from your group. We know you guys will have great and amazing stories of lives restored."

For more information, please call 405-949-3253 or email