April 17, 2007 Meeting Report
By Neeta Pai, Stamford PH Support Group Leader
Editorial note: Support Groups are often born out of determination and need. Patients are diagnosed and begin to search for others for support and information. If no support group exists, a newly diagnosed patient will not think to start a support group immediately, they must learn to cope; deal with family, friends and the general public; and educate themselves on the disease and treatments. Neeta Pai’s story speaks to her two year long journey of learning, searching, and finding other patients, before ultimately, leading a group of patients in her home town.
From Diagnosis to a Search for Patients
Neeta Pai and family
When I was first diagnosed, just like everyone else, I went from relief in having a name to my distress to shock, disbelief, self pity, denial, blame and anger to final acceptance in knowing there was no cure; furthermore, perhaps a devastating, short prognosis. I wanted to meet other patients who were in the same predicament as I was and was told to go to PHA's website by the doctor who was treating me then.
I was a stage IV patient who survived after being in ICU 6 nights. My short-term memory had failed me -- paying attention, listening and reading was a major challenge -- besides the breathlessness from even speaking, not to mention being bed ridden!
I got onto the website, only to be overwhelmed with everything I saw just on the homepage, let alone the reading part! I kept pestering a nurse at Columbia only to get the same answer over and over, to go to PH Association's website! Still being in my shock, fear and disbelief stage; I desperately needed to find another patient to talk to, compare notes with and see the results with my own eyes.
|"It's been so fantastic to see my dream come true in the form of a support group meeting for us, Pulmonary Hypertension patients in Stamford, Conn."
I went for a second opinion to Dr. Roxana Sulica at Mt. Sinai medical center. While waiting to be seen, we witnessed Dr. Sulica's other patients who seemed cheerful and healthy, sharing their life stories with her, hugging and kissing her with gratitude — and I wanted to be there. So, I stayed on with her for my treatment, with an immediate trust; and spoke to some of the patients during my next few visits.
Despite this progress, I was yet to meet a patient who felt close enough to me and with enough time to show and talk about their I V therapy treatments! In early 2005, I finally got better enough to explore PHA's website to find the message boards, post and get to know a few patients on the net. Yet, my wish to physically meet at least one patient and hear their story in person was not to be fulfilled.
Conference: The PH Community All Under One Tent!
Dick, Neeta Pai's husband Nick, Neeta's
PCP Dr. Shanthi Devaraj, and a caregiver at Stamford's inaugural meeting
We decided to attend PHA's 7th biennial conference in Minneapolis on June 21, 2006 with Dr. Sulica’s blessings and a confidence that she would be right there with us. It was such a wealth of information and pleasure to meet not one but hundreds of PAH patients who were willing to show and tell and talk about anything and everything, extremely happy to share their stories! Patients of all ethnicities, national backgrounds, young and old, skinny and fat, white and of color, female and male -- you name it and we found one! Everyone was so friendly, including the medical professionals, research scientists, drug company representatives and not to forget, the PHA staff! I cried out of joy, felt so contented and satisfied, and filled with inspiration, wanting to give this joy to another patient who has perhaps felt as lonely as I did. (Read more about Neeta's Conference 2006 experience)
Getting the Group Off the Ground
Returning from Minn. back home to Stamford, Conn. where we now lived, I focused on getting a venue for our PH support group meetings. My application for a venue at Stamford’s Tully Center was lost due to cracks in the system, but with the help of Annie Pizzonia from the Pulmonary Rehabilitation program at Tully, we were blessed with a venue for our first PH support group meeting in April.
Dr. Roxana Sulica at
Stamford's inaugural meeting
When I wrote to Dr. Roxana Sulica to speak at the meeting, she went all out by letting me pick a date, time and topic! Next, I contacted Debbie Castro, PHA Support Group Director, inviting her to attend our inaugural meeting. It’s amazing how everyone lended so much support. I can't appreciate Debbie Castro enough -- who without making it obvious, made me think and appear as if I was the one responsible for the success of our Inauguration. Looking back, I see it was Debbie who came up with a flyer to help me since it was my first time, mailed it out to all the selected patients with area codes close to the venue. This brought 3 e-mails from interested patients, although they could not come due to conflicting dates. To get over my fear of "what if nobody shows up?” Debbie introduced me to, and I humbly entered, a world ‘accessible only to support group leaders’ on Yahoo groups with warm welcome and support from other leaders (PHA’s Support Group Leader listserv). I aired my fears to them and got wonderful ideas along with moral support.
I met one other patient, Maureen, in Stamford, via Kathryn Lerz whom I requested to be my co-leader. Then, remembering to do everything within my power and leave the rest in God’s powerful Hands, using my new user ID and password, proudly posted all about our group on our groups’ PHA support group page. Each of these acts was bringing me one step closer to culmination of my dream.
Liz Mahoney from Accredo sent me the web contact's e-mail address asking to post also on PH Central board which brought one more interested patient. Liz herself posted on the website she created for New England PHers, which again brought two more interested patients, only one whom could attend the meeting. Yusetti Ovalle from Accredo also sent out flyers. Although we received them a bit late on Saturday prior to the meeting, it still brought one more PAH patient.
At Long Last: We Finally Meet!
Lenora Norman, Dr. Sulica, Dr. Sulica's clinical
coordinator nurse Pam Rotella, and Neeta Pai
Weather predictions were not good but, come Tuesday, 4/17, the sun was shining on us. I rested well and with my dear husband, Nick, who had taken a day off from his job to help me out, and with Debbie's help, carried our balloon decorations and literature from PHA and got to the Tully center at 5:30 p.m. Within 15 minutes, people were all there.
We had many excited patients, their caregivers and drug company representatives who had come to listen to hear Dr. Roxana Sulica speak. Accredo and Caremark drug distributors' representatives and some of Accredo's staff who talk every month to some of us patients on a regular basis also came to meet us and to learn from the talk. An Actelion rep had ordered a feast fit for the Queen and her battalion from Eclisse, a very classy Italian restaurant in Stamford.
We opened the meeting with welcome, housecleaning, photo permissions, read the confidentiality statement, and went through with introductions. Dr. Sulica came in at 6:30 and went straight to the Q & A which was appreciated by almost everyone having heard all about what is PH many times over already. Ending at 8 o’clock sharp was not easy with patients wanting to keep the Q&A session going until there was no end. Dr. Sulica, being so knowledgeable and answering questions with absolutely no hesitation of any sort, was a real treat! Personally, the second best treat was the presence of my PCP, Dr. Shanthi Devaraj.
The patients gathered out in the hallway again, to do justice to the feast for the second time, to take some home with them, etc. Eric Coehlo from Actelion had ordered so much food - 2 varieties of salad, calamari with hot, medium and mild sauces, chicken marsala, salmon and veal entrees along with 2 kinds of bread, cheese ravioli, angel hair pasta, fresh fruits and various pastries including cannolis, fruit pies, chocolate mouse cake, Tiramisu and NY style cheese cake along with sodas and bottled water! There was enough food for the members of another group that was meeting in the next room and many of the health center's staff who were thrilled, never having been treated so well by any group before!
It was great for us patients to meet at the meeting after having been chatting over the e-mails. We, the members of 3 CT groups are hoping to come together and host a Tag sale this year and a fun walk next year to raise funds towards research for a cure. For me, it was a dream come true!
"The universe is change; our life is what our thoughts make it"
~Marcus Aurelius Antoninus~
Stamford, Conn. PHA Support Group Webpage
Neeta's Our Journey's Story
Neeta's Conference 2006 Story