Chariots of Fire

So there are a few things to talk about.  On April 26th I switched to liquid oxygen instead of using an oxygen concentrator all the time.  I also went to NYC for my last two tests and should know shortly if I am going to be listed.

My oxygen company set me up with liquid oxygen.  I have this huge metal barrel in my bathroom that holds 100 pounds of liquid oxygen.  I also have the small unit that I can take with me.  The small cannister attaches to the large barrel so that it can be filled up for when I go out.  I have been trying it out for a couple weeks now and I like it so much more than the concentrator.  It seems big in my bathroom, but it is so much more convenient.  A few reasons why I like it better.

1. The fact that it is silent. The concentrator is loud and annoying. We had it in the second bedroom so we wouldn't hear it when we were sleeping.  It also makes the room it is in super warm. Between the noise and the heat we have to move it out of there whenever we have quests.
2. I have also been needing the oxygen a lot more during the day so I have been keeping it on a lot and Jason has his computer in that room.  He never complained about it, but I know it was annoying.  He would have this loud banging thing next to him, the room would be hot and he couldn't hear me if I tried to talk to him from downstairs.  My kitty Lindy hated it too because he loves to sleep on the futon. Haha
3. It works nicer too. The oxygen is more concentrated so I have less force blowing in my nose.  I use a water bottle attachment for my oxygen too and that works better on this thing. The concentrator would end up putting some of the water into the tubing.  Even with the water trap I would still get water in the line. So far that hasn't happened once with the liquid oxygen.
4. I like the little portable thing too. It is much lighter than the oxygen tanks.  I was really having a hard time lugging those around.  It took more energy to carry those than I had.  I haven't used the portable thing much.  I haven't been feeling good lately and have been staying in, but the couple times I have used it I like it.

On May 2nd Jay, Gram and I all went up to the city.  Jay had to go to court so Gram came to go to the hospital with me. Jay dropped us off at the Staten Island Ferry and he went to court.  We really enjoyed the ferry.  It was relaxing and we got to see the Statue of Liberty.  It took about thirty minutes to get to Manhattan.  From there Gram and I took the subway, line 1, all the way until the hospital.  There is a stop right at the corner.  I looked it up online and the website said that particular site was handicap accessible.  I was in my electric wheelchair so this was important information.  Well come to find out there are two lines that stop there, line 1 and AC.  The one we were on was not the accessible one.  Luckily we found two guys to carry this huge wheelchair up some stairs so we could access the elevator to the street.  I walked up the stairs slowly. It took a lot out of me, but I was able to do it.  We then got to the hospital to complete the two tests.

First I did the six minute walk test.  It went alright.  I had to stop more than I did the last time I had it done, but I was able to complete the whole six minutes.  Then I went back to the waiting room for the ABG.  I was taken in and put in the chair. She put me in a laying down position and prepped my wrist for the ABG.  First she took a needle and injected some Lidocaine.  The injection only hurt for a second.  I like the how Children's puts the cream on and lets the wrist get numb that way.  This way numbs it faster and deeper.  After she injected the Lidocaine, my head got very heavy and the room seemed to be getting darker.  The next thing I remember the woman starts saying my name and asking me if I feel light headed.  I told her yes.  She sat me up and told me that my heart rate dropped to the 40's.  This was a dramatic drop from my normal which is in the 100's.  She said she went to take my blood and she couldn't feel the pulse in my wrist anymore.  She said this is a reaction some people have after having the Lidocaine injected into their wrist.  She had my sit up until I felt a little better.  She then tried again with me sitting in the chair.  That went much smoother.  She got the blood on the first draw and I didn't feel anything.  Almost passing out was not fun, but she the procedure itself was painless so I can't complain too much about it.

After that we met up with Jay for another set of Educational Seminars.  Here they talked about the surgery and what to expect.  He went over a lot of different statistics, most of which I already knew and have mentioned before.  He mentioned the statistics of getting a lung and how many people have dry runs.  Then when the surgery is done how most people spend 3-5 days in ICU and then two weeks in the hospital recovering.  How it was common to have acute rejection the first year.  How 50% of transplant recipients have chronic rejection after five years.  He went over survival rates too.  He then explained to all of us that this information can be overwhelming.  Some of the numbers might be scary, but not to consider ourselves a statistic.  I understand what he is saying.  We can’t sit and worry about “Oh my god, I may not make it after 1 or 2 or 3 years.  How are you to know if you are going to be in the 80% or the 20%?  You don’t.  The point of this transplant is to live.  We get the lungs, do the best we can to keep them healthy and live with them.  You can’t sit and worry that they might not last.  We can’t consider ourselves statistics.

About listing; my transplant doctor told me that they have meetings every Friday to go over their patients.  This is where they decide if the patient is a good candidate and if they are to be listed then or later.   I was told that they are going to bring me up for listing either on May 4th ore 11th depending on when they get the results together. I should be hearing something from them shortly after.

Now that it looks like I am going to be listed my mom, my gram, Jason and I are working on putting together a fundraiser to help with the expenses that go along with the transplant.  We have been talking about it for awhile, but we didn't want to start anything until we knew I was going to be listed.  She really made it sound like I would be so we have sat down and started doing a little bit of planning.  We want to have a band, Chinese auction, chicken dinner, and 50/50.  Right now we are working on trying to find a place to have it and get a date set. Once that happens we are going to start going out and putting together some baskets for the auction.  We are hoping to have it sometime in August. Anything sooner seems to be too soon and anything later might be too late.  I have no idea when I am going to get the call and I want to be able to go to the benefit.  I know there is a chance that I might not be feeling good and can't go, but I really want to try, so the sooner the better.  I will keep you all informed on the plans as I know more.