New York, New York

On June 30th Jay and I headed for NYC.  We had the hotel booked for two nights, a babysitter for Lindy (my kitty), pop and snacks in the car, the paperwork for the doctor and all of our luggage.  Traveling with CF is not an easy thing because we can't exactly pack lightly.  On top of the normal stuff people take with them on trips, I have to bring my vest, nebulizer, all my meds and my oxygen concentrator.

The vest itself is about the size of a small toaster oven.  They use to be much bigger, but I got this one a couple years ago to replace it.  It is more "portable" than the one I previously had.  As you can see in the picture there is a suitcase with wheels to place the machine and all the accessories inside. It is definitely easier to travel with this newer model, but it is still pretty heavy.

The drive from Buffalo to our hotel in the Bronx took us about 7 1/2 hours.  We made one stop for gas and to eat, so not horrible, but we were happy when we finally got there.   Staying in the Bronx wasn't too bad.  The neighborhood was run down and not exactly the NYC you see on TV.  The hotel was a Best Western and once inside it wasn't bad.  The room was pretty small but it was quiet, clean, and had everything we needed.  Next time we are going to stay in New Jersey.  The hospital is located right next to George Washington Bridge so it is only a few minutes away from Jersey.  Shaw told us that the hotels in Jersey are cheaper so we are going to try it out and see if it is worth it.  This hotel was $120 a night, so it would be nice if we could try and find something a little cheaper.

My appointment at New York-Presbyterian was July 1st at 3:00.  We got there at 2:40 and they were all ready for us.  My basic vitals were taken and we went right in with the nurse coordinator.  She was really sweet.  She introduced herself and told us what she did and how she assists the doctor.  She then asked for all of my paperwork and there was quite a bit of it. They wanted me to fill out basic forms, but they also wanted me to have proof of a few things also.  I needed a list of all my vaccinations, including most recent flu and pneumonia.  Proof that I had been to the dentist in the past 6 months, eye doctor in the last year, had a PAP smear in the last year, and if I had a DEXA scan in the last year.  She then asked about my medical history and then brought in the pulmonologist.  Again, she was really nice also.  I felt really comfortable with her right from the spot.  She gave us a little bit of background information also.  She told us what she does and how she ties into the whole lung transplant team.  The team includes five pulmonologists, three surgeons, the nurse coordinator, a social worker, financial adviser, a psychologist and a few others.  She took more information and then filled me in about things and took my questions.  So the gist is, she is going to go over all the paperwork and tests I gave to her.  Then she is going to contact my doctor to see if any other tests have been completed and get the results from him.  When she finds out what I have already done, she is going to send scripts to me to get everything else taken care of.  I am not sure all of what I need yet, but I should find out soon here.  When I get everything completed I have to go back and meet with the rest of the team. They are also going to look at all my tests and then assign me with a number b/w 1 and 100, with 100 being the sickest.  If I am sick enough I will then be placed on the list based on my number.  Every three to six months, depending on how sick I am, I will be re-evaluated and given a new number reflecting if I got better, sicker, or remain the same.  She gave me an idea that if my number is ten, I won't be put on the list.  If my number is around forty, I will be listed and the wait for lungs is about six to twelve months for.  If my number is in the high eighties, I could get one as soon as six weeks.  After talking to the doctor I had to go to the lab and do my first tests.  This included a urine test and a blood test.  They took fourteen vials of blood out of me! I asked what they were testing for and the person taking my blood said, "Everything". haha I know they were doing blood type, sugar levels, vitamin levels, checking for different antibodies, a PRA, an AIDS test, there were more things in there, but I am not exactly sure what.  After all the needed blood was drawn, my hand was purple.  It didn't hurt or anything, but it definitely didn't look too pretty. I have given quite a bit of blood at times, but never that much.

It is hard to say what number I am going to be given right now because I have not done a lot of these tests.  Based on the fact that I am not on Oxygen all the time (I only use it at night) and I can get into the forties after a hospitalization, I might still be too healthy.  The doctor predicted I would be around a 10, but we won't know for sure until all the tests are completed.  I am anxious, excited and nervous all at once.  In some ways I am ready for this transplant yesterday, because I really want my life back, but at the same time I want to hang on to these lungs as long as I can.