2006 Conference Story
I started planning to go to the conference in February. At the same time I contacted Debbie Castro (staff member at PHA) about starting a Support Group in my area because the nearest group was over five hours away. We had our first meeting on April 8th. There were six people at the meeting, despite the bad weather. In the mean time I had applied for a scholarship to the conference because I knew I could not attend without help. I made homemade doggie treats and sold them and had a yard sale to help with the expenses. I made $175.
Then Easter Sunday I learned that my brother had a large mass on his right kidney and they needed to operate right away. I took the money I had earned to and went to Florida to be with my brother. I stayed there for a month, to be with him. I also fractured my left foot while there. I kept in contact with Debbie and Karen Portner (another staff member at PHA), about the conference and my application for a scholarship. I also wrote around fifty letters to friends and family for help. On May 12th Karen informed me that I had been awarded a scholarship.
I started making arrangements for the conference. I called all six airlines that flew out of Savannah, Ga. to Minneapolis, Minnesota and only one stated that I could fly and that I would have to use their oxygen. The cost came to $1200 round trip. So I called Amtrak and the cost from Savannah to Minneapolis, round trip was $935.00. So I tried to raise enough money, however two weeks prior to the conference I only had $450. I talked to Karen and she said the hotel room for three nights was taken care of. That meant I would still have to pay for one night. So I called Greyhound and if I bought my ticket seven days in advance it would only cost $168.00 round trip. I bought my ticket the next day. To save money on the trip I went to the store and bought stuff to eat and drink on the way. That way I didn't spend a lot going to Minneapolis. On Tuesday June 20th I left Hinesville, Georgia at 7:15 P.M. for a 36hour bus ride and arrived at the Hilton Hotel in Minneapolis on Thursday June 22nd at 6:30 A.M. I checked in at the front desk and was told it be at least 1:00 P.M. before I could get my room.
I went and got breakfast, then went up to the third floor where I met Jennifer Proulx, Debbie, Karen and other staff who where setting up for the conference. Debbie took me to a little waiting area where I could sit and rest until my room was ready. That's when I met Andy & Strat. They where videoing the conference and had to interview me. Even though I thought I looked horrible after 36 hrs. on the bus they still interviewed me. Around 12:30 I went to get a sandwich and check on the status of my room. I was told that it would probably be after 3:00 before I could get in my room. I went back upstairs to the third floor and when Debbie found out I had to wait until 3:00 for my room, she took me to her room so I could get some sleep.
When my room was finally ready she came & got me. I went to my room and took a shower and went to sleep. Then around 4:30 my roommate Iris Tal from Israel arrived.
What a wonderful roommate. I learned so much about her and her struggles with PH in Israel. We are now friends for life. After a good nights sleep, I met Friday morning with great anticipation towards the conference. My first session started with the Support Group Leaders meeting & luncheon.
I learned so much from other group leaders on how to be a better group leader. The rest of the day and all day Saturday were extremely busy. Going to different sessions and meeting all the vendors, I became very tired. Since I could not bring my scooter, I was using a wheelchair to get around, most of the time by holding onto, I figured that was why I was feeling so bad. I decided I would go take a nap before dinner. Jennifer Proulx pushed me back to my room. On the way to the room she told me I had to be at dinner because I was in the video that Andy and Strat had shot.
When I got to dining room, Andy approached me and said I was the star of the video, so don't get mad. When the video started and I said I took a 36 hr. bus ride to get to the conference, everyone started clapping and the people sitting at my table turned around and said is that you? I didn't think it was a big deal (I still don't). After the dinner I decided to go outside for some fresh air. I sat outside about an hour, when Dr. Elliot came up and said "I want shake your hand. You are an inspiration to me and the reason we do research." Several people came by and made a comment about me taking the bus. These comments made me feel good.
On Sunday morning I woke up feeling drained. I was having a lot of trouble breathing. I told my roommate Iris that I wasn't going to breakfast. I called Natalie, the nurse on call, and told her how I was feeling & that I thought I had just over done it. She told me to turn my oxygen level up and just stay in bed for the day. By noontime I was having a really bad time breathing and I was in a lot of pain all over. I spoke to Jennifer; she called Natalie and called me back. Natalie called Dr. McGoon and they decided I needed to go to the hospital and that they had called an ambulance. I was still saying no I don't want to go to the hospital when the firefighters and paramedics arrived. Iris, my roommate kept encouraging me and told me that she would pack my stuff for me. What a wonderful friend.
While in the emergency room, I started thinking here I am over 3000 miles away from home, everyone from the conference is gone home and I don't know anyone here. Then Stephanie Layer called and let me know that Kim Faber and herself were from the local PH support group and had been called from someone at the hotel, that I was in the E.R. and they would be there for me. After 4 ½ hrs. in the E.R. I was admitted to the hospital with dehydration and a bacterial infection. Stephanie called several times to check on me. Kim also called and when he found out I needed my Tracleer & other medicine he told me he pick it up on Monday morning from the hotel and bring it to me. Iris also called to check on me and told me she was flying out very early Monday.
I now have two wonderful friends in Minnesota. The hotel called and told me that they were holding my room for me. On Tuesday Rino Aldrighetti President of PHA called the hospital to check on me. I told him that I was being released that afternoon. He told me not to worry about the extra nights at the hotel, that they would take care of it. I told him that I planned to leave on Wednesday morning to go home. He told me to let PHA know if I needed anything on the way home.
I left Minneapolis at 6:45 A.M. on Greyhound for what was suppose to a 36 hour trip back to Georgia. We got to Chicago on time, however my bus from Chicago to Atlanta, Ga. left an hour late. Then when we arrived in Nashville, Tenn. We found out that the bus we had been riding in was missing several lug nuts on one wheels and it was not safe.
So we had to wait another hour for a new bus. So when I got to Atlanta, instead having an hour and a half to change buses, I missed my transfer by 15 minutes. To make things worse I down to my last tank of oxygen and the company supplying me had been at the bus station 2 hours ago and had left. I had to call my home carrier and explain to them what happened. The gentleman from the company came back just about the time my last tank ran out. The next bus leaving for Savannah, Ga. wasn't until 7P.M., which meant I had to wait 6-½ hrs. in Atlanta. I was also told that when I arrived in Savannah at 12:45 A.M. that I would have to wait until 7A.M. for the next bus to Hinesville. Hinesville is only 45 minutes from Savannah, so I called my friend Christy from Atlanta & asked her if she could meet me in Savannah at 12:45 A.M. and she did. I was not about to sit another six hours in a bus station. I got home around 2A.M. So instead of taking 36 hours to get home it took almost 43 hours. Would I do it again? MOST DEFINITELY!!
Despite all problems I had, I learned so much from the conference and made many friends. I learned how to deal with my disease, help others with PH and how to be an advocate for PH. And the session that meant so much to me was How to Deal with Family & Friends & Betty Wojciechowski sharing the Spoon Story.
So this is my story, HOWEVER my story is not what is so important. Educating the public, including medical personal about Pulmonary Hypertension. And most of all raising enough money to fund research, so that one-day we will have a CURE for Pulmonary Hypertension.
I would like to Thank everyone who worked so hard to put this Conference together and Especially those who gave to the Scholarship program, because without them I would not have been able to attend.
Again THANK YOU;
P.S. Next Conference in 2008 in Dallas, I will find a way to fly!!!!