Stronger

I am home, off the IV's and feeling OK for the time being.  There are a few things to catch everyone up on including my hospital stay and my appointment in NYC.

The rest of the hospital stay was uneventful and I was surprised how smoothly all the tests went.  For the transplant center I needed an updated x-ray, 6 minute walk, and ABG.  The x-ray is obviously a simple one so that was no big deal.  I was a little worried about the walk winding me and causing a coughing fit.  Some days just getting from the couch to my wheelchair I am winded.  Luckily it wasn’t bad.  I used a walker and took my time.  I was able to walk 88 feet in six minutes which was less than last time.  The test I was mostly worried about was the ABG.  I have had some negative experiences with those and they are a little painful.  It is definitely not one of my favorites.  Thankfully it turned out well though.  My doctor came early in the morning.  I had Lidocaine on my wrist to numb it.  I was also given some Xanax so I wouldn't pay too much attention to what she was doing to me.  They gave me two pills of Xanax this time and it was knocking me out.  When she came in I gave her my wrist and closed my eyes.  I was basically sleeping through the procedure. haha  She used an ultrasound machine this time to find my artery a little easier.  It did help her and she was able to find it faster.  She had to stick me three times because she was trying to get to it at a different angle.  I was numb and it didn't feel any of them. My wrist was a little sore afterward, but not bad.  It was really sore the next day however.  I am now good for six months so hopefully I will have my transplant before I need another.

I was able to go home on Friday March 1st.  Kelly came in from Michigan State.  She was on spring break and stayed with me the entire time.  It was great to have her here.  I don't get to see her much so to have her for a full week was awesome. We mostly relaxed and watched movies and did a little shopping at the mall of course.  She was really helpful all week with my meds too. I was still coughing pretty hard and was having a hard time breathing so I appreciated the extra help. Between her, Jason and Bobby I was pretty well taken care of.I did the IV's for one week and then took the needle out of the port.  After the two weeks of antibiotics I am feeling a little better.  I am not getting my energy back like I use to, but at least the coughing and breathing is easier and I am able to sleep at night.

On Saturday March 9th Dad took Jason, Bobby and me out to Joe's Crab Shack.  I had never been there before, but I had heard good things about them.  You can order these stem pots full of seafood.  There are a bunch of varieties.  I don't normally have much of an appetite, but when it comes to seafood I can eat a lot.  I love it.  I got the Arctic Bay steampot with queen crab, shrimp and a lobster.  My dad went big and got the Bean Town Bake which had clams, shrimp and two lobsters.  We had a good time eating out.  I scared everyone at the table when I went into a coughing fit, but that is getting normal to me.

Friday I went to NYC for a follow up appointment.  Jason and I were taken there by Wings Flight.  We got in the plane at 11:00 and we were in NYC at 12:15.  This is so helpful to us because with the amount of oxygen that I am on, driving is almost impossible now.  When we landed we had a car come pick us pick.  I am not sure about the name of the company, but they donate the rides for passengers of Wings Flight.  We got to the hospital about 12:45 and Jay went in to get a wheelchair.  It took forty-five minutes to finally find one!  Come to find out (the coordinator at the transplant center told us) there are more available at a different entrance.  It would have been nice of the people at the entrance to tell us that.  All they did was tell Jason they will bring one to him if they find one.  He ended up finding one himself.  We finally got up there, but had to wait a little while.  I don’t mind waiting, but I didn’t like keeping the pilot waiting.

At the appointment we went over everything to make sure all the tests are up to date.  All I need at the moment is to get PFT's done by April 24th.  She updated all my tests and said that my score will be going higher with these new test results. We asked why I have been on the list for almost a year now and still have not gotten a call.  We were told that I have been matched a few times to lungs, but they were deemed nonviable before they even called me.  I was happy to hear that I have gotten some matches.  I know that none of them worked out, but at least I am getting hits right?  She also mentioned to me about dual listing at another center to possibly increase my chances of getting transplanted faster.  My doctor recommended me look into Pittsburgh so I am going to make some calls and see how this works and what I have to do.  This is something I am going to look into this next week.  I have to contact my insurances, and the center.  I am sure there is more.  We called for a ride at 3:50 and he was there by 4:30.  We were then home by 7:30.  When we got home I was exhausted.  So that is everything for now and I will let you all know about the dual listing when I find out more.