2006 Conference Story

Raye D. Bohn

My First Conference – Roadmap To A Cure

We arrived on June 22 around 11:30 am, so we could have time to relax before all the excitement began. I started my official volunteer duties at 3:00 pm on Thursday first by meeting Debbie Castro who I had emailed many times and talked with. I showed her my jacket, which I had made up special for Minnesota it, appears in the album #1 Support Group #1. I then went to the registration window and started to meet many attendees, I got to meet with the wonderful Sperando family from New York. After Debbie and Katie asked me if I would attend a session on Friday about Speak Out: Tools You Can Use To Raise Awareness. They wanted me to tell how I had gotten two newspaper articles published one in November 2005 in our local little paper and the second on January 1, 2006, which hit about 86,000 homes, as it was a Sunday paper.

On Thursday evening, we had supper with Liz Mahoney, our patient advocate from Accredo and the “New England Group” six of us from Connecticut and Jeannette and David Morrill from Maine. We had a nice supper and great conversation, Jeannette and I realized I had spent many summers in Maine in the Moosehead Lake area as a kid with my family, parents, grandparents, aunts, uncles and cousins.

On Friday morning we went to breakfast at the Hell’s Kitchen around the corner from the hotel what a great breakfast that was. We then returned to the hotel for our tour of the vendors booths. My article about our trip to Alaska last year was in the Accredo’s Dimensions on page 2 & 3 so I took it to every both I went to and gave them a copy of it as I collected all the goodies available. I also had an article in the Pathlight put out by PHA on page 4 about dealing with “My Fight for PH Legislation and Our Lives! Boy was I proud that I was each publication. Little did I know what lay in store for me later from Carl Hicks?

At noon, I went to the lobby to meet Becky Copeland and her daughter Patti from Georgia, Becky and I had been emailing back and forth for over a month before the conference. My husband Ed and I took Becky and Patti out to lunch so we could talk and really get to know each other. As we left the restaurant and I was wondering, why I felt tired and out of breath, I pulled out my Folan pump and discovered it was not turned on…. I can only conclude that I never turned it on the night before when I mixed and changed pumps before we went out for supper. Therefore, it could have been off for over 15 hours, that goodness I also take Revatio. I turned the pump back on and went on my merry little way only to get a whopping headache and turn very red, I left the conference opening and went back to my room to mix medicine again. As I sat there mixing I watched my nametag jump as my heart pounded…. I was determined not to miss anything, I then got ready to go do another volunteer job – room host for “Parenting a Child with PH (ages 12 and up). There I met Marcia Stibbs and told her what I had done and how I felt, she told me to go lay down but I said no I would sit in the back count the people and watch the time. What a emotional session this was for me to listen to the parents tell of their children and living with PH, wow what an educational experience it was for me. After this session, I returned to my room and lay down with my sleep apnea machine which forces air into your lungs it always helps to calm things down. Then at 5:30 pm, I attended the session on Awareness for Debbie and Katie. Katie introduced me to the group and after I got up and told them how one reporter told me, they do not do the disease of the month stories. This reporter ended up doing the New Years Day story on me, my doctor and even attended one of our support group meetings, he told me he really learned a lot about PH.

We then attended the dinner on Friday night with Becky and Patti, sitting with a doctor and nurse from Oregon, we had a very nice conversation over dinner.

On Saturday morning we attended breakfast, then went to the session at 9:00 am “The Basics” where my doctor from UCONN, Raymond J. Foley, D.O. was one of the speakers. He spotted me when I came in and came over to talk with me I informed him how I had screwed up my pump and meds he was very concerned about me. I told him I had to leave the session early to go cover the registration desk again, so he said he would meet me up there after the session was over to talk with me. He showed up just as I was finishing my volunteer duties, and we talked in the lobby, we made plans to meet for lunch so I told him where my husband, Ed was meeting me so we would meet there also. I then attended the “Emergency Situations” here I told how I had met with my local EMT’s and explained about PH my meds, the pump and even showed them how the pump and cassette goes together. I had also brought what I needed to mix my medication for a day on Flolan. Imagine my surprise the next week when I received a hydrangea plant from the EMT’s. The group at this session all reacted to this with wow how nice. I could not believe the emergency situations that people brought up I had never even thought that those things could happen, I am extremely lucky that my doctor is only 45 minutes away and that I had not had a line infection (until I got home from Minnesota) my first in 26 months, someone told how they had 8 in 18 months, oh my gosh.

We had lunch with Dr. Foley enjoying the “Journey’s Luncheon” and Dr. Foley told me to go rest and take a nap because he was concerned about how I was feeling, so I listened to the Doctor and went back to my room and rested until dinner. I had wanted to attend some of the sessions on Saturday afternoon so Ed did attend some for me.

We went to dinner on Saturday night and again sat with Becky and Patti, I was enjoying listening to Carl Hicks talk about his dealing with the legislature and trying to get funding for PH research. He was about twenty minutes into his speech when he brought up a line on the huge screens in the front of the grand ballroom; he then asked if this looked familiar to anyone. As he read it I was reading it and all of a sudden, I said, “Oh My God”, he then brought up two more lines and I tapped my husband on the back and told him that these lines were from my article in the PHA Pathlight Spring 2006. Carl Hicks then told where these lines came from and who had written them. He also told when I had been diagnosed and who I was, he then asked if I was present would I stand, imagine my surprise to all this, I stood up and had the whole crowd clapping for me when he told them how I had gotten all the congressmen and senators in Connecticut to co-sponsor the PH Research bill pending in Congress. After I had people coming over to congratulate me, ask me how I had done this, and get my email address. After dinner was over I went up to Carl Hicks and thanked him, he said he was sorry for broadsiding me. Wow, what an ending to my very first conference. However, unfortunately, my doctor, Dr. Raymond J. Foley had left early so he could get back to Connecticut to spend Sunday with his family, and Liz Mahoney, my patient advocate from Accredo had missed my 15 minutes of fame…

Sunday morning we went to the breakfast and said our goodbyes to our new friends. After breakfast, I went to the research room, gave blood, and took all the information to fill out for PH Research. I then attended the “Test Results: What Do They Mean?” After these sessions, we went to the lobby and signed up for a tour of the twin cities in the afternoon. On this tour, we met Dr. Amy Choi from Australia she sat behind us. We had a great conversation about Flolan and PH while seeing the sights of Minnesota.

Ed and I spent the rest of the week seeing Minnesota, we went to the SPAM Museum, yes there is a SPAM Museum it was very interesting. On Tuesday, we checked out the Mayo Clinic, and then went up along the Mississippi River then on to the Redwing Pottery outlet store stopping at the upper Mississippi River and Lock and Dam # 3 and Hastings, Minnesota. On Wednesday, we head for Stillwater a very quaint town we drive through and continue on to Marine on St. Croix where we go to the general store buy our lunch, which we eat on the green at a picnic table. We then continue on to Taylor Falls where we do a paddleboat ride up the St. Croix River very relaxing. We return to Stillwater where we stay for our last two nights. On Thursday, we head into Stillwater where my husband does the Underground Mine Tours, and I hit all the antique shops and stores what fun for me…we have lunch at Ruby Begonia’s restaurant and then go for a trolley ride around town. Our final evening we do the Zephyr Dinner Train ride, a 1940’s travel back in time, a five course dinner traveling through the countryside, what a wonderful end to our trip to Minnesota.

On Friday, we head back to Minneapolis and the airport, what a nice treat; the car rental company has a drive take up to the Northwest terminal and drops us and our luggage off. Here security is very strict, I am checked more thoroughly then I have ever been checked before but they are finally done and we head for our flight home.

I have to say this was an astonishing conference; the staff of PHA covered everything from A to Z and never missed a beat. These people did so much and I was amazed I have attended other conferences when I worked in the banking industry and did reunions at the college I last worked at and the staff from PHA did not forget anything, they never showed if there was ever a problem anywhere and met everyone with a big smile they were amazing…. I cannot wait for the next one to come….

I was surprised when I looked at the photo albums from the conference and there I am in two of the pictures, and seeing all the others that I met there brought back such great memories of my first conference with PH. Thank you, thank you, and thank you a thousand times over for all that PHA does for all of us who suffer from PH…

Raye D. Bohn
Thomaston, CT

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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.