Can't Fight This Feeling Cont...

Tuesday Jay and I drove to NY.  Before we left I had a nurse come over and access my port. I figured this would be easier than having them put an IV in.  I might as well save my veins while I have this port.  Although we weren’t heading to the city on a good note I was still excited to go.  I was excited that I would be able to see Erika!  I hadn’t seen her since I had left the hospital in August.  I hadn’t had time to meet up with her during any of my other appointments.

Wednesday Jason and I went to Presbyterian for the bronch.  Due to some misinformation I was given we did a lot of running around.  First we had to go up to the transplant floor because I forgot my paper work for blood work and PFT’s.  While I was there I asked where the bronch suite was.  I knew the building, but forgot which floor.  She told me floor one.  I thanked her and we headed for PFT’s.  We had to go down to the first floor, get another elevator and then head to floor
three in Vanderbilt.  There I did my PFT’s.  My weight is still about the same and PFT’s were not much better than the week before.  They are up to 69%, but some of that increase is due to the fact that Children’s has me taller than NY.  That was always the case.  I mentioned it to them years ago, but they never changed it because they wanted to keep the numbers consistent for comparison.  Now that I am after transplant they have fixed it, but it was still wrong for the last one.  Anyway…the PFT’s are still not good so something is going on.

When I was finished with that we headed for Herbert Irving Pavilion for the bronch suite.  We had to get on an elevator, go down, cross a cat walk, go through one building and then we got to the elevators in Herbert Irving.  Here is where things got real annoying fast.  We needed to go down, but the elevators were full every time one came to us.  So we ended taking one that was going up just so we could get on.  We went from floor two all the way to top and then down again.  When we got to the first floor it didn’t look right to me.  This is where I go to get x-rays done.  I went to the main receptionist of the building to ask him where it was.  He was extremely rude to us, but did tell us it was on floor thirteen.  Jason was not happy to hear this.  We got back on the elevator and headed up there.  I was talking to the receptionist there and told her that my port was already accessed so I did not need an IV, but I did need some blood work.  She told me that they did not do blood work there. I was mad.  Last week I had asked if I could have my blood work done at bronchoscopy and I was told yes.  Had I known this was not an option I would have had my nurse take blood from me back at home when they accessed me.  I had to get my levels drawn again so I asked her where we could go.  She said we could go back down to the first floor.  So we headed back on the elevator and went back down.  When we got down there I saw how busy it was.  I was not about to wait in that line so we headed back to the transplant floor.  Going back and reading how I got here, you can see that is quite a trek. Luckily when we got there, we got right in and they took my blood.  After all that we headed back to Herbert Irving Pavilion.

Finally we got back and were able to register.  Believe it or not, we were there only fifteen minutes later than they wanted me to arrive.  They want you there an hour before the procedure takes place so you can register, get IV and prepped.  The registration went quick and I was already accessed so we were ready to go way before it was time to be called in.

The bronch went well.  Previously I have always remained knocked out until I was in the recovery room.  This time I think my doctor gave me less anesthesia because I remember waking up during it.  I wasn’t uncomfortable or in pain.  I just remember my nose feeling all stuffed up and I heard her saying, “Open, close, open, close.”   As she is saying this I am opening and closing my eyes.  I have no idea why she wants me to do this, but I thought I was doing as she was asking me too.  While I was out my doctor came out and talked to Jason.  She told him that my right lung was inflamed, but my left was fine.  She was not sure what was causing it exactly.  We would know more when the results came back.

Later in recovery I was telling the nurse about waking up and how I was opening and closing my eyes.  She giggled and told me that my doctor was telling another person in the room when to open and close something on the scope.  Haha  It is funny how I interpreted that while I was under those drugs.  The nurse told me she is always curious if the patient’s realize what is going on.  As she was taking vitals I told her I did not have an IV because I was accessed.  I did not want to be de-accessed quite yet I just wanted it flushed before I left.  She went and got the Heparin.  She went to give me four units, but it looked like so much less than I give myself at home.  I told her to be safe I wanted another.  She told me that four is what they normally give, but she did as I asked her to.  She flushed me and then we were on our way.

We went back to the hotel and took a nap for a little while.  Later that night we decided to go out with Erika.  I had to check my blood sugar before I started getting ready.  When I gave myself some insulin my arm bled a little and wouldn’t stop. That was weird because if it does bleed one wipe with the alcohol pad and it stops.  Not this time however.  Then while I was getting ready I reached inside Jay’s bag and cut my thumb on his razor.  I reflexively pulled my hand back and looked at it. It didn’t hurt, but looking at it I could tell it was going to be a bleeder.  Just as I thought that the blood started streaming and it was bleeding badly.  While all this was happening I grabbed a paper towel to stop the bleeding.    Jason mentioned the Heparin and how my blood was not clotting because of it.  Then he starts singing Miley Cyrus, “It can’t stop, no it won’t stop.”  I couldn’t help, but laugh.    It was definitely a bleeder, but it had stopped bleeding before we got to Erika’s place. Come to find out, I was wrong and I got a little more Heparin then I should have.  Hey I was slightly out of it and confused.

After all that excitement I was finally reunited with Erika.  She was so surprised with how much I had changed in the last couple months.  For one thing I have gained ten pounds since I have seen her.  I look so much healthier.  Also my face keeps changing due to the prednisone.  For awhile it has been very puffy, but it seems to be coming down a little.  Seeing her was of course a great time.  It is never a dull moment when with her.

Thursday my transplant coordinator called me to tell me there was no rejection.  I was so happy to hear this.  Nothing was growing on the cultures yet and she would let me know how those turn out in a few days.  I de-accessed my port since I knew I wouldn’t need IV steroids and enjoyed the rest of my stay in NY with Jay and Erika.  We are now back home and still have not received a call from the center.  As of right now I don’t know what is going on, but my body likes to do weird things and keep me guessing.    No news is good news right?  I would like some kind of answer though…   Is it just a cold and it will go away on its own?  That would be nice.