OUR JOURNEYS

2006 Conference Story

Neeta Pai

Thursday, June 22, 2006

I am in Minnesota already since Monday, 6/20! We are 15 minutes away from the Hilton Minneapolis at my daughter's home in Plymouth:) I just finished going over the 'Agenda at a glance', every session descriptions and making notes of what we want to attend. I had to be selective based on what pertains to my illness, IPAH. At any given hour, there are up to 10 patient/family led sessions, up to 12 support group meetings, up to 7 medical led sessions and a couple of PH staff led sessions on various subjects. So, now I see even if many of us are scheduled to send the reports to you, Diane; it will still be different not just from our view points but, also, on various topics depending on who attended which session. I am so excited......I can,t wait. It was my DH's birthday on 6/20! We celebrated again, for the third time with our daughter, Jaimi and her hubby, Shane. On June 17th, we had a small, quiet family party with 15 members at our condo's club house. On June 18th, we had a party with 52 people at Rudy's Beau Rivage on the Hudson River in NY. It was a lot of fun. Yesterday, Shane's Mom and step Dad took us out to dinner for continued celebrations. Tonight, we are celebrating with Shane's Dad and step Mom. My DH turned 65. We are all also celebrating my having been stabilzed, thanks to Dr. Sulica and being able to manage the disease and still able to have a fairly good quality of life. Joy all around with gratitude:)

Anyway, here's what I have chosen to attend. If you please go to Conference Agenda at a glance and program descriptions, you will know what I mean. Reminds me of how we pre-planned what to do at the Disney world.

Friday the conference begins (for me). I will visit the PHA store and registration desk early in the morning, View the exhibits. Perhaps attend the scientific session program and research posters. Attend the room host training from 9:30-10:00 a.m. since we (myself and my DH) have volunteered and are assigned to host Sat. 9:00 a.m. session. ( I am looking forward to meeting Dr. Frantz from the Mayo Clinic who will give the talk on Living with a chronic illness).

Anyway,let me continue here......

At 12:30, we will meet Liz Mahoney from Accredo and the New England support group in the lobby and rush off to Conference opening from 1:00 to 2:30 p.m. in the grand ball room, I assume with lunch. It should open with the key note address by the members of Congress, Kevin Brady (TX) and Tom Lantos (CA): Supporting Research and Awareness: An Extraordinary Government Partnership" followed by PHA advocacy awareds presentations.

3:00 - 4:00 p.m. We plan on attending Medicare & Disability Insurance in the Board Room 1 by Susan Tointon, RN and Penni Potter and Kim Bernstein from Access.Speakers will address Medicare including part D and how disability insurance works. This is of grave importance to me since I quality for medicare in March of '07.

Next session from 5:30 to 6:45 unfortunately overlaps the fashion show which I do not want to miss. we need some fun;<) In spite of my wanting to attend Katie Kroner's session on "Speak Out: Tools you can use to raise PH awareness", I am afraid we are both keen on not missing the fashion show. Perhaps we will sneak out 1/2 way thru the show and attend Katie's talk.

7:00 - 9:00 will be "Roadmap to a Cure" dinner with speakers: Dr.Michael McGoon from the Mayo clinic. He is also PHA's board's chair-elect speaking on "Many Path:One Journey".For some reason, it sounds interesting like many paths of different religions to One God!

Bed time since we have an early morning again! I shall continue in another e-mail about Saturday and Sunday plans:)

Thursday, report 2

I wish I could be at two places at the same time! I would most like to have attended a couple of programs at the same time, unfortunately, we are forced to choose! I want to attend the Infammation in PAH. For some reason I thought it was only for medical professionals and did not register! Now it is too late anyway since we have to host at teh same time.

Thursday, report 3

Saturday 4:45 to 5:45 PHA's message board members meeting:) Looking forward to it.

Saturday:

7:30 to 8:45 a.m. Around the world breakfast when leaders from different nations will present their stories.

9:00- 10:00 a.m. We host room.

10:15-11:15 a.m. Research in PH -- the door to new therapies
We are also interested in familial PAH screening (since my daughter is right here) I have to get more information and decide!

11:30-12:30 Emergency situations
We are also interested in Alternative medicine!

12:45 to 2:15 "Journeys Luncheon"

2:30 - 3:30 Clinical Trials
We are also interested in changing to different PH meds
Perhaps my DH and I will split to be able to attend both sessions! However, he will not take any notes......thank goodness whoever thought of tapes:)

3:45 to 4:45 Familial PH support meeting

Sunday

9:00 - 10:00 Test Results: What do they mean?
We also are interested in an overview of medical therapies for PAH

10:15-11:15 Investigational agents - Gleevec Ambisentan, Pulmolar, Statins, Cialis.

The End:)

Post Conference Report, Monday, June 26, 2006

My experience at this conference held in Minneapolis has been just fantastic. It was sooooooo terrific meeting other PHers, PHA Staff, PH Specialists, their RN's and NP's, drug distributors like Accredo, Caremark; medical tool company reps like Respirtonics; Remodulin; pharmaceutical reps from Myogen, Pfyzer, Cotherics, Actelion, etc. Amongst 1200 or so people, PHers are the stars! I felt like everything rotated around us -- so much caring, understanding, compassion, acceptance and personalized education!

I wanted to write all about the sessions I attended, even took some notes, but, dang! my luggage is still not here (I hate to think it's lost)! With a short lived memory, I am not sure how much of it can be recovered in my paraphrasing! So, I figure let me write about what mattered most to me and what is it that still has me smiling from this end to that and floating in air.

I loved meeting other PHers who are in the same boat as me, struggling, fighting this disease, giving support to each other. Some newly diagnosed, others having survived a few years and a few over 20 years! PHA staff took the time to peel and stick little pink hearts on PHer's name tags, a second silver star sticker on those that have survived over 8 years! Reminded me of kindergarten happy days:) Support group leaders came with more stickers and Heather from the message board brought us all PHA pins, Mariana, the Mexican girl from the message board, a pretty embroidered purple flower sticker. I felt like a girl Scout Brownie wanting to collect more and more all around my name tag!! A lot of flash and snaps:) It was like being in a dream land! Of course Cinderella had to come home at midnight and wake up to realize PAH is still a disease, but, there must be a happy ending with cure somewhere in the near future:)

I met caring medical professionals who opened up their beautiful hearts to us along with thier knowledge of treating the disease (without us having to flash out the insurance cards!). The last dinner sitting at a table with a PH Specialist was the best! This gave one the opportunity to clear any further questions you may have had on that particular subject or like in my case, I sat with Dr. Ronald Oudiz from UCLA's PH Clinic who gave a talk on 'PH and Exercise' that I was unable to attend, yet able to learn quite a bit via Q & A at the dinner table. I was happy and proud to meet Dr. Senjay Mehta of Indian origin, very knowledgeable PH Specialist from Canada who spoke along with Dr. Channic at one of the medical-led sessions. It was a thrill to meet Dr. Frantz and his wife, a RN working tirelessly in the research lab where we all gave out 2 vials of our bloods for research, signed up for the surveys, etc. I was amazed to see how inspiring he was to all of us, PHers sharing his story in his medical led session. Most of all, I was truly impressed with some of these physicians who are our saviours, so to speak, yet so humble......clear indication of which to me was having had lunch at the same table with Dr. David Badesh with normal conversations, my not having recognized him at all. Unfortunately, with every minute of our time being fully accounted for, it took effort to meet a medical professional unless it happened naturally.

PHA staff is so special working tirelessly and cheerfully being extremely helpful, taking care to prevent chaos, lending supportive hands wherever needed with smiles that nothing could erase off their faces and some like Debbie Castro with a great sense of humor passing on cute, funny comments:). It was especially gratifying to see chairs in the elevator islands since wait at times was pretty long. There were water stations every few feet with plenty of both glass goblets and plastic cups. Food was quite satisfactory with fresh fruits at breakfast and two breaks along with other goodies; on both the floors where various meetings took place. Beverages had ample herbal teas along with decaffeinated tea and coffee besides sodas, juices and juice drinks. Rest rooms were kept clean in spite of attendance of over 1100 people, credit goes to the hotel, yes, but thoughtfulness in making the Hilton staff aware of PHers on diuretics with constant need of facilites goes to the PHA staff. I was almost as comfortable as if I was home!

The reps from the drug industry wanting to load off their humongous collection of pens, pads, post it notes, stress buster adult toys, blinking balls, blank books for journals, luring all of us to their tables with raffles, magic show, exhibits about the disease while educating us with literature, helpful hints and friendly welcome. There was photo booth where you could take a picture of your family, with your PH Doc or whoever your heart desired. There was a whole gallery of scientific session information with posters and diagrams that went straight over my head:)

Thanks for listening :)
Nita

 

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

801 Roeder Road, Ste. 1000, Silver Spring, MD 20910   Patient-to-Patient Support Line: 1-800-748-7274
Webmaster@PHAssociation.org
    Privacy Policy   Virtual Tour of Website    Provide Feedback & Report Bugs

Designed by Matrix Group International, Inc.® | © 2014 Pulmonary Hypertension Association. All Rights Reserved.

NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.