Hawaii: Conclusion

We made it back safely. We walked in our door about 1:00 p.m. on Friday afternoon.  We were exhausted from traveling all night.  Rick went to Burger King and got lunch.  Our dogs were quite happy to see us.

What has it been like since the trip?  Well, first you have to get over jet lag and then you have to get back into EST.  I was quite tired probably until at least Wed. of this week.  Nicole seemed to do pretty well with all of the travel and stuff which I am totally grateful for.  I would have loved to seen more things but we only had a couple of days where we didn't have any responsibility with UT.  One of those days was Sunday and we all needed that to rest and recuperate.

The people at the hotel and people you see are so nice.  Most people said some type of greeting to you... something I'm not use to living in Florida.  Everything is so expensive, and maybe that was just at the resort.  I did go to a Target and the prices weren't  much different than back home.  The sales tax there is something like 4 %

I feel bad because since about Jan. 5th through Feb. 10th there was a whirlwind of activity ... phone calls, emails, etc., etc. and this week nothing.  I guess I feel that we have been forgotten.  I feel that I'm just being prideful.  I truly want to believe that a lot of good things will come out of all of this.  I was very touched yesterday when Greg sent Nicole a postcard from Hawaii on the day he left... he stayed probably longer than any of the others.  I also got an email from someone we had lunch with on the marketing team thanking us for our time.

My biggest hope is that this was an experience that Nicole will never forget for the rest of her life.  I hope that she was make to feel special like she truly is.  She may be very ill but she can still make an impact on so many lives.

Thanks to all of you who read each of my entries.

Hawaii: Part Six

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.

Hawaii: Part Five

I believe it is now Wednesday on our adventure in Hawaii.  We woke up early and ordered room service and got ready to do some sight seeing.  We had decided that we were going to Pearl Harbor.  Due to security issues you are not allowed to take anything into the property.  Rick thought this meant that they searched your car etc.  I figured this probably wasn't true but I went along with him and didn't take anything with us.  This was my first mistake....

We got to Pearl Harbor and drove around trying to find a parking spot that wouldn't require us walking a half a mile.  We finally did and got the wheelchair out and the O2 set up and headed in.  I think it is pretty cool that it doesn't cost anything to park nor to get in.  None of the exhibits cost anything either.  He got us tickets to see the USS Arizona memorial in which you see a film than you take a boat out to the memorial which is over where the ship sunk on Dec. 7th.  We walked around and went through the exhibits etc.  While we were waiting for the boat tour Nicole complained that she was tired which I thought was odd because she was in the wheelchair and if anybody should be tired it should be me as I was the one pushing her.  I didn't think much about it.  We went on the boat tour which both Nicole and Rick were disappointed by because this time of year the water is very murky and it is hard to see the sunken boat.  I thought it was still pretty cool and very sadden knowing that men had lost their lives and had went down with the ship and weren't recovered.

After we paid a visit to one of the gift shops for some keepsakes we left to go have lunch and Rick wanted to go to North Shore which is famous for its waves.  When we got to the car and went to fold up the wheelchair I realized that Rick had caught Nicole's  O2 tubing into the wheelchair and had crimped it so it was cut.  No wonder Nicole was tired... because Rick said I couldn't bring anything I didn't have a spare tubing because I didn't have the case that her O2 concentrator goes in where I usually keep an extra tubing.  Nor did I have her medicine and it was getting close to that time.  We found a Ace Hardware and Rick got some electrical tape and taped it up which worked for a short time but Nicole really wasn't getting what she needed.  We went to McDonald's for lunch in the town of North Shore which is a total surfer town.  The road is so little and narrow with shops cluttered on both sides.  There's a park that is along the bank of North Shore that we stopped at and went to the shore line.  There were a lot of lava rocks that were worn from pounding surf it was really neat but wouldn't you know on this particular day the waves were totally flat.... there were a lot of surfers though but to me the water was quite cold.

We left and decided to get back to the hotel so Nicole could get some good O2 and to take her medicine which was overdue.  We missed our exit and ended up in the next town over and had to backtrack.  I had a bad attitude because I was worried about Nicole and knowing that Thursday would be exhausting for us as we have a breakfast meeting and a lunch meeting with UT people before we leave the hotel at 3:00 HST for our 6:00 HST flight to Dallas.

I will be back tomorrow with the continuation of our last day in Hawaii.

Hawaii: Part Four

We are now on Tuesday which is the big presentation day and the day the secret of this whole trip is out.  Our day starts early as Julie will be coming to our room for us at 6:40 a.m. Hawaiin time.  We are wearing dress clothes and Nicole looks just beautiful.  Julie comes and we go down the service elevator and through the bowels of the kitchen in the basement.  We have to wait in the hallway until nobody is outside of the ballroom where the presentation is taking place. We are then taken to wait outside the doors and I can hear the video being played and my voice.  Tania is standing there waiting to open the doors so we can make our entrance.  Nicole is in the wheelchair and has her O2 in her nose.  I hear laughter coming from inside and so I assume that is the part where I call the senior VP, Jay, arrogant.  There's loud clapping and the doors open for our entrance and there's a standing ovation.  I push Nicole to the stage and she takes off her O2 and walks up on stage.  There are four chairs... Alex is on one  end, with me, Nicole, and then Jay.  It is an Oprah style interview and Alex asks me questions like how has our stay in Hawaii has been so far; how did I feel when we got Nicole's diagnosis.  He said that Nicole struck him as a strong, very resilient young woman and what has impressed me the most about Nicole since her diagnosis.  He said to Nicole that they had a photo of her taking Tyvaso while using the mouse on her computer and drawing on her tablet at the same time... this brought laughs.  He asked Nicole what it was like to take the Tyvaso every day.  He asked if she thought the Tyvaso was making her feel better.  They asked me if I have seen a difference in her condition since starting the Tyvaso (they manufacture this drug). He mentioned about my first impression of UT being a big company who didn't care about it patients etc. and he wanted to know now what has impressed me the most.  Also, asked if I wanted to say anything to Jay. Then he asked Jay some questions.  They then told Nicole that they had a gift for her and that they knew she loved to draw and also from me that she loves stuffed animals so they gave her a $75 gift certificate to an online art store and a stuffed monk seal which is Hawaii's state animal.  They also started a tradition by giving Jay a new award that will be given out at all future global sales meetings.   It is the "No Patient Left Behind Award."  This concluded the presentation and people started filing out but we stayed on stage talking with Jay and having picture after picture taken.  For those who know me personally you know how I HATE having my picture taken.  When Greg and Julie first came to interview us I said that there were three things that I truly disliked and they were having my picture taken, flying and public speaking and I was going to be doing all of these things by going to Hawaii.  After the presentation we went outside for a few minutes and mingled before their next meeting.  We had to come back in an hour for their next break which we did and sat at a table and had a snack.  Many people came up to us and said "hi" and gave me their business cards or just said what an inspiration we were.  After this we were free for the rest of the day until 4:00 p.m.  We went back to our room.  Rick and I walked around and down the beach but Nicole was tired and wanted to stay in the room.  We ordered room service for lunch and just hung out.  We went down to the football field that had been created for the field games that UT was doing.  They had some kids and their parents bused in from a local homeless shelter to participate in the fun.  Nicole sat in her wheelchair and was the official time keeper for the trivia pursuit relay race.  Once all the activities were done we went to another part of the resort for a BBQ and award presentation from the field days. Each kid that had come received a back-pack and award.   Nicole got an award for being the time keeper which I thought was very nice.  We stayed until 7:30 p.m. or so then went back to our room.  It was very hard adjusting to the time difference and since I had to keep her on EST for her medicine it was even more difficult. 
Well that is all for this entry .... I will be back tomorrow for Wednesday.... Aloha

Hawaii: Part Three

The flight from Dallas to Honolulu was loooong.... to say the least.  It is just under 8 hours.  We left our house at 5:45 a.m. and arrived in Honolulu at about 6:30 p.m. their time and they are 5 hours behind Eastern Standard so it was 11:30 p.m. our time. It was dark when we arrived.   Makes for one very long day.  I am so grateful that Nicole was in a wheelchair the whole time or she would have been much more tired than she was.  It took us awhile to get our bags in Honolulu but we had a car waiting for us at the airport to take our party (which consisted of Julie who works for MindWorks (the multimedia company) and two other co-workers of hers that joined us  on the Dallas to Honolulu flight to the resort that is on the other side of the island.  We reached the hotel and was wisked through the service elevator up to our room so nobody in UT would see us and the surprise wouldn't be blown.  This is why I couldn't say anything on facebook about it as it was going to be a surprise.  The night we arrived there had been a wedding or something and there were fireworks right outside on the lagoon that we could see from our balcony.  The fireworks were better than most of the July 4th firework shows that we have.  We ordered room service and then hit the hay as we all were exhausted but excited at the same time.

We woke up Sunday morning and had to be discreet. If someone asked us we were told that we had to say that we were just here on vacation. Rick walked around the property a lot as he does smoke cigarettes and they only have a couple of designated smoking areas. Rick and I walked around the grounds to get a feel where we would be able to walk with Nicole etc.     We tried to recuperate and make sure that Nicole got enough rest.  I believe it did rain on Sunday also.  The Super Bowl was the same day which we watched a little bit of.  The bar poolside was also showing the Super Bowl so you heard a lot of cheering.  I believe we ended up walk around the grounds with Nicole.

On Monday, we took  Nicole around the grounds of the resort and she took a lot of pictures. She was tired and didn't want to really go anywhere.  We had rehearsal for Tuesdays  presentation at 4:00 p.m. - 5:00 p.m.    This is when I met Alex for the first time.  He is the senior VP of selling and marketing and had been the one who had invited us to come on the trip.  We saw the video that they made from the day they spent at our house.  Greg who is the owner of Media Works did a fabulous job.  I admit I didn't like myself on the video.... my voice... the 10 pounds the camera adds etc. and Nicole didn't like seeing herself either but she is beautiful so it didn't matter. Everyone, including Rick, was in tears.  My dogs where even stars :o)  We were whisked back through the kitchen and up the service elevator to our room.  We went to the restaurant for dinner.  It rained for several hours that evening along with some windy weather.  The food was just fabulous, as you can imagine, but every meal was at least $70 which in my opinion is way too expensive.

I will be back tomorrow with our day on Tuesday which includes the big presentation and the whole reason we were there.

Hugs:o)
Jane

Hawaii: Part Two

Fast forward to Feb. 4th ... Nicole had a rheumatology appointment (this in itself is another post) but it was a day where everything that could go wrong did go wrong.
I was expecting one of Nicole's medicine to arrive UPS and I had told the pharmacy that I wouldn't be home and to have UPS leave it with no signature. I get home from Nicole's dr. appointment and there's a label from UPS saying they came by and will try again on Monday  I had to call the pharmacy because we would be in Hawaii on Monday. They called UPS and I was told I would have to pick up the package myself if I wanted it. UPS called and let's just say the lady shouldn't be dealing with the public as she wasn't pleasant. She told me that I had to pick it up between 7:30 p.m. - 8:00 p.m. that evening. I told her I wanted no signature as I knew I wasn't going to be home and she told me it was against their policy to leave medicine with no signature. I said they have done it for a year with no problem. I was suppose to get a travel letter for security and labels for Nicole's medicine from the other speciality pharmacy in the mail and didn't and had to call them. They had to send a courier from Ft. Lauderdale to give them to me who didn't come until 11:30 p.m. that night and we had to leave our house at 5:45 a.m. Thankfully, Rick stayed up and waited for him so I could go to bed.
Anyway, the big day arrived ...Nicole was very upset and didn't want to go because she didn't want to leave home.  We were greeted at OIA by a very new gentleman who pushed Nicole in the wheelchair and helped us get through security without any problems. We got through security and was at our gate at 7:30 a.m. for our 9:15 a.m. flight. The flight from OIA to DFW (Dallas) wasn't too bad. Nicole took some incredible pictures from the plane.She is an awesome photographer. There was snow on the ground in Dallas and it was cold and  it was also Super Bowl weekend and we had quite a few Steeler fans on the plane. We had a two hour layover in Dallas. We went to a charging station and charged Nicole's oxygen concentrator that she had used on the plane. We got lunch and boarded for the marathon flight to Honolulu. The flight attendant asked if they could start Nicole's O2 after take off to which I said "absolutely not" it will be started now and continue until she gets off. According to the flight attendant the script that I'm assuming the travel agency sent said it was non-continuous and I said her doctor would never had said that. I showed her the script that I had that said O2 24/7 but could be off of it for a few minutes at a time. Needless to say, they hooked her up. Nicole and I had seats on one side of the plane and Rick's seat was a couple rows back on the other side. He said something about it to the lady he was sitting next too who told the flight attendant. In the middle row next to me there was a young couple who either were getting married in Hawaii or who had just gotten married. The flight attendant asked the lady if she would move to the seats in the next row that were against the bathroom but she said "no, because they didn't recline". I would have liked to slap the attitude right out of her. The flight attendant asked if Nicole and I would be willing to move. The flight attendant said to the lady that he would remember her when he came around with the beverage cart and she said "I brought my own". The gentleman sitting behind them helped me get down our carryon bag and Nicole's O2 concentrator and then the flight attendant had to come over and carry the O2 tank behind her. I must say I had some not very nice thoughts about this lady. All was well though and we sat on the runway waiting for a connecting flight that was late. I will stop here as this is long again and post another segment later.

Background on our trip to Hawaii

Back in Oct/Nov. 2010 I was fighting with Accredo to get Nicole on Adcirca and Tyvaso. I called United Therapeutics who manufactures the drugs Adcirca and Tyvaso to see if they would help me with assistance paying for Adcirca. I was taken a back when the women I spoke to said that they wouldn't help me because Nicole is a minor and since the FDA hasn't approved these drugs for minors they didn't want the liability. The PH specialist had sent me a RX card so I would only need to pay $20 per month and even signing her up for this was a hassle because she's a minor. It turns out that Aetna (my RX provider) wouldn't honor the card and I would have to go through the patient reimbursement program. I didn't want to go through the hassle so I went ahead and talked to her doctor and he said she could stay on the Revatio since Pfizer was paying my co-pay for this. I had a good feeling that Caring Voice Coaliition would be helping me with Tyvaso.
I have a PH friend who is a peer mentor for Tyvaso (Colleen B. ) that I sent an email to basically just venting about the whole situation. I wasn't very kind about my thoughts and opinion of United Therapeutics and Accredo. For those of you who are my non-PH friends and/or don't know the history of the company it was founded by a mom whose daughter was diagnosed with PH about twenty years ago or so. My friend asked me if she could forward it to her contacts at UT and I said no problem. A couple of weeks later I received an email from a senior VP within the company when my email to Colleen ended up on his desk. He asked if we could have a phone conference between himself and two of his co-workers. I had this conference and was quite happy with the outcome when he assured me that he would do whatever he could to help the situation. A couple of weeks after this I got a call from Accredo (speciality pharmacy that UT uses) saying that if I still needed assistance in paying for Adcirca and/or Tyvaso  they would be glad to help as the policy had been changed in regards to minors. I asked if this was only for Nicole and I was told "no it is for everyone". I cried when I heard this. Jay had really worked some magic to get this done to help Nicole.
At the beginning of January I received another email from the senior VP of selling and marketing at UT who said he had seen my story and interaction with Jay and wanted to discuss a "cool idea" with me. We set up a phone conference and at this time he told me that every year UT has a global meeting and they bring in someone in the PH community that has influenced the company and he said that Nicole's story was the one for 2010. He said there meeting this year was in Hawaii. I had another conference with him and the mulit-media company that sets up all their meetings. They came to our house and spent the day with us to get a sense of what Nicole's life was like and from this made a 5 min. video or so. We were told that all expenses ... airfair, hotel accomodations, meals would be paid for by UT. They even gave me a gift card to take Nicole shopping for clothes to wear in Hawaii.
They made all the arrangements but even so I had a lot of extra things to do as there were restrictions on Nicole to be able to make the trip. She would be in a wheelchair the whole time and would be on O2 24/7. This didn't go over well with her.
This has gotten very long so I will continue from here with my next installment.

Introduction

Hi:

Well, I finally did it!  I decided to make a blog for those family and friends who aren't on facebook.  My name is Jane and I'm 49 years old and have been married for 23 years.  We have one daughter, Nicole, who is 16 years old.  I have homeschooled her for the last five years and she is currently in 10th grade.  We use the Abeka Academy DVD program.  We have two dogs Lucy ( a puggle which is a cross between a beagle and a pug) and Chelsea (a pug) and we have Spirit the cat. 

In January 2009 my daughter was diagnosed with a congenital heart defect (CHD) called ventricular septal defect (VSD) which means she has a hole (actually two) in her heart between the right and left ventricles.  She was also diagnosed with pulmonary arterial hypertension (PAH or PH) which was caused by the heart defect.  She also has Eisenmenger syndrome which is related to the heart and how the blood pumps.   Earlier this month I took her to a rheumatologist for pain she's had off and on her whole life and she was diagnosed with Ehler's Danlos Syndrome or EDS the hypermobility class.  I haven't had a chance to really research this yet but will talk about it more when I do.  This is just a very general recap of my life. 

I will be posting about a trip we took this month to Honolulu and how it came about etc. I will attempt to copy and paste from my facebook page.  If I can't I will have Nicole do it as she is a computer genius and I am not. 

The purpose of this blog is a release for me for my frustration etc. and also to educate people about Nicole's illness and what she goes through every day.  I also will talk about what it is like for me to go through this as her caregiver and more importantly her mom.  I may also, with Nicole's permission, post some of her artwork and/or photography.  I will have a goal of at least writing once a week but if it is a very stressful day I may pop on.

Thank you for taking the time to read this.

Have a blessed day!
Hugs:o)
Jane
Troubles are often the tools by which God fashions us for better things.