Today is our final day in Hawaii :o( We had breakfast with Martine (founder and CEO of UT); Robert Jeff (COO), Greg (Mind Works) and Jay Watson (the senior VP who helped get the policy changed after my initial emal) . Martine is so nice and so down to earth. She talked about her daughter and her doctor. She called her doctor ... Dr. Bourge at UAB and had him speak to me right there over the phone. I was grateful for that but at this moment I'm happy with Nicole's PH specialist at Shand's Hospital. It was amazing to find out she lives in Brevard County which isn't to far from where I live. Also, her daughter graduated from Full Sail which is a little college that caters to artist and computer majors. This will be the perfect place for Nicole to go but it is very expensive and at this point I don't know if we will be able to afford it.
I found it fascinating the talk of stem cell research and how Martine believes that they will be able to grow a heart and lung for instance from Nicole's own stem cells. I hope and pray it happens quickly.
We went back to the hotel after this to pack and get everything ready to leave at 3:00 p.m. We have a lunch meeting with several people from the Tyvaso Marketing team. Nicole isn't feeling very well this morning. Part of it I think is the fact that she doesn't want to go back home... especially the flight... and she doesn't want to go back to our life... can't blame her there. Lunch was with Chris, Greg and Tania. Tania was the one who got my email that I sent to Colleen. They asked me questions as to my experience with receiving the Tyvaso and if I had any ideas on how to improve it. I thought this was very nice. During the lunch Jay Watson stopped by to say goodbye to us ... I thought this was very nice. As a side note, when Jay first contacted me back in Nov. via email he addressed me as Mrs. Jones. I asked him if he had anything to do with the fact that the email I received this morning from Dr. Bourge was also addressed to Ms. Jones. It is a running joke at this point. After our lunch, we had about 1 1/2 hrs. before we leave the hotel. We just made sure we had everything and didn't leave anything behind.
Fast forward to 3:00 p.m. Julie and Greg were in the lobby to say goodbye to us. I had gotten a card along with a gift card for Julie for Starbuck's as our thank you for all she's done. Greg will be receiving a special piece of artwork from Nicole. It was very emotional. At this time Julie gave us two bracelets that an employees wife had made for Nicole and I. They are beautiful. We loaded up and the driver took us to the airport. I must say that I do not have good feelings toward Honolulu Airport. One of our bags were too heavy so we either had to take something out and put into another piece of luggage or pay $60 extra. We took something out. Then I guess our seats weren't together again so we had to buy a seat or something ... I'm not sure about this as Rick was taking care of this. Next, on to security... Nicole being in a wheelchair didn't really pull any weight here as getting her through the line faster. They gave us a real hard time about her medicine and we had to take it out of the bag and were going to put in through x-ray but finally after arguing with them they didn't. The one lady was a real b**** and shouldn't be working with people. She started yelling at me for holding up the line etc. when if she hadn't given me such a hard time the line wouldn't have been held up. I would have liked to have a little private chat with her. Finally, got through security and went to our gate. The airport isn't very big fortunately. When we boarded the plane the flight attendant asked us which one was on the O2 and Nicole said she was... I think he was a little taken aback. Anyway, he said is it okay if we turn it on right after take off... what are you nuts!!!!!!!! of course not. I had to show him the script and they went ahead and got her hooked up. The flight wasn't full so I was able to sit in the seats in front so Nicole could stretch out in the two seats and go to sleep. I didn't get more than a couple of hours sleep. We arrived in DFW about 5:20 a.m. it was cold. The flight attendant had announced the gate for the flight to Orlando so we walked to the gate... that airport is huge. I went to the rest room and Starbucks for coffee. Rick came to the charging area to tell us we were at the wrong gate as this was for the flight after ours. We took the train this time back to our correct gate. At breakfast Jay had told us that he was a member of the Admiral's Club which is a lounge that most airports have with comfy chairs, rest rooms, coffee, snacks, bar, and places to charge your electronics. He offered us to go there during our 3 hr. lay-over. When we got to Dallas I had an email from his executive assistant telling me to have the desk call her and she would pay for it. When we got there it was just a hallway with elevators. We were going to leave when a lady walked in so Rick asked her if she worked here and she said "yes". It seems that Jay's office had called her and told her to expect us. She thought we had decided not to come we told her we had went to the wrong gate. It was nice for the time we were there. The next leg of the flight went by pretty fast. We used our own O2 concentrator for this segment. When we got to OIA there was a very handsome young man waiting with a wheelchair and he took us through the airport to baggage and waited until we found our driver and took us to the car.
Tomorrow I will talk about the week since we got back and any impact that this has had.