Dilemma

Yesterday I had my follow up doctor's appointment in NYC.  I had to struggle a little over the week to make this happen.  I was not feeling well again, but did not want to miss this appointment.  My last appointment was April 17th.  I missed the one in July because of being admitted and I didn't want to miss another one.   Another thing I did not want to do was cancel my flight.  So I did what I needed to do to in order make it through the week and get to this appointment.

Before I went to the doctor’s appointment in NYC, I was already not feeling great.  I knew this was going to happen because just ten days after I got home from my last admission I was already getting fevers.  After two weeks I was already feeling congested, coughing at night, and not able to do much of anything.  I didn't go back in right away because I really wanted to make that appointment in NYC.  Compliance is really important with the transplant team and I don't want to do anything that might take away my chances of getting new lungs.

The Tuesday before the appointment I was miserable.  I woke up so out of breath I barely made it downstairs.  I had to coax myself by thinking “You are almost there” so I could get to my oxygen tank and turn it up. I got down there, turned it on to ten liters and put the mask on my face. I then proceeded to my vest and Albuterol and did my treatments.  After about an hour I was feeling better and was able to turn the O2 down to six.  I was still having a hard time, but I wasn't completely struggling.  The rest of the day I just sat still because I didn't want to do anything to upset my lungs.  I knew it had to do with the change in the weather, but I called my doctor to see what I should do.  I wanted to come in, but I wanted to be able to leave on the flight on Friday.  It was already set up with Wings Flight and I didn't want to be one of those people that canceled.

When I called them I was told that I might want to come in, but I had to come in through the ER because the floor was full. Also there was no guarantee I could leave for the appointment, but not to worry because the transplant center would not hold it against me. She also didn't want me flying because it is harder to breath at higher elevations and she didn't want me to take that risk. I didn't like the ER idea or the slight chance of not getting out.  I wasn't convinced about missing the appointment so I decided to call Wings flight and ask them for some advice. When I called she told me that the flight was already set up with Joe and the plane flies no higher than 8,000 feet so I shouldn't have too much of a problem.  Also she explained to me that the pilots were all volunteers and some had full time jobs and would take a day off to take someone to an appointment. Also it takes the place where someone else may have been able to go.  I knew all of this already, and that was one of my huge dilemmas about cancelling.  I could not make up my mind. I didn't want to struggle with breathing 5,000 feet in the air, but I did not want to cancel.  I decided to wait and see how I felt on Wednesday and make the final decision then.  Later that day my dad came up to stay with me because Jason had left to Florida for work.  He was going to be gone till late Friday so my dad said he would stay with me till then.  No one wants me to be alone anymore.  I took it easy that night and told Dad that I wasn't sure about going into the hospital yet or not.  He told me to choose what I felt more comfortable with.

Wednesday I felt a lot better and decided I could do the trip and go into the hospital on Monday.  Thursday was a little tough, but thankfully Friday was a decent day.

Jason was in Pennsylvania for work so my dad stayed the night and went on the trip with me.  I think he was more excited about it than I was.  :)  We got there at 10:45.  We had to sign a paper and then the pilot Joe took a picture of us to put on the Wings Flight of Hope Facebook page.   After that we headed out to the plane.  It was a little one that could sit four people. I sat in the back with my liquid oxygen and portable oxygen concentrator.  I brought them both with me for two reasons:
1.  The POC only goes up to three liters where the liquid goes up to six.
2.  I knew the liquid wouldn't last both ways so I used the POC when on land and the liquid when in the air.  It is a good thing I brought both because the POC was alarming at me when we got higher up.  The plane we were in was not pressurized so it wasn't able to concentrate enough oxygen from the air.

The whole way there my dad and pilot were talking about planes and protocols and the different navigation equipment.  My dad was really enjoying it.  haha  We all had headsets on so we could talk to one another.  It was pretty cool because along with talking to each other we could hear traffic control too.  I was in the back listening to them talking and taking pictures out of the window.  We were also getting to know each other.  He is an awesome guy.  He is so nice and I could not believe all the things he does for people.  He is incredibly giving and I have no idea where he finds the time to do it all.  It was neat because we were between 5,000 and 8,000 ft above at all times so the view was cool.  I was looking forward to seeing the city when coming in, but it clouded up a little bit before we got there and we couldn't see anything.  Maybe next time.  This won’t be the last time I am going to the city.

When we landed we were then taken to Presbyterian in an Escalade.  It didn't take long to get to the hospital at all.  My dad ran in and got a wheelchair for me and then we went to the appointment.  The only update we got was my LAS score is now 43.  This is higher than the average, which is around 37.  This score is before the updated tests and information they got from today are added.  She said the number will go up a little bit.  Basically we are just waiting for lungs to come in my size.  She did tell me however that I can get AB, A, or B lungs.  I did not know this and it made me really happy to hear.  This increases my chances of something coming sooner.

After that Dad and I went to the lab so they could take my blood and I had to give them a urine sample.  Not really sure what for, but hey they wanted it so I gave it.  Then we went to the cafeteria because we were both starving.  We got some food and then I called for someone to take us back to the airport.  The place that brought us could not come back and get us until 7:30 and it was only 4:00 at the time.  So I called Joe and thankfully he was able to find another company that could get us right then.  We got picked up around 4:30 got into the plane and landed in Buffalo around 7:00.  When we got out Joe wanted a picture of me and him, I gave him a hug and thanked him again for everything he did and went home.

I was exhausted.  I am so thankful that I was able to do this instead of having to drive because this was just eight hours. Driving would have been a two day affair.  Hopefully the next time I am in that plane is for my transplant.  If I do have more appointments to go to, at least I know I can fly there and do it all in one day.  That is another reason why I really wanted to make this appointment.  If my next time is for the transplant, I already know how this process works.... what airport to go to what kind of oxygen is sufficient, and what to expect with the flight in general.  It is one less unknown when I get the call.  It was a struggle, but I am happy I was able to do it.