Testing 1, 2, 3 cont.

Monday I went for the DEXA scan and upper GI.  These were scheduled on different days because the DEXA scan can't be done if any contrast was used for a previous test within seven days.  They were both simple and not bad at all.  For the DEXA scan I laid on a table while they took pictures of my hips.  It was quick and painless.  The UGI wasn't too bad either. The barium that I had to drink didn't taste too good, but it wasn't the worst thing I have had to eat or drink.  First I had to fill my mouth with it and then swallow when the doctor told me. I think that was the worst part.  He took pictures of it going down while I was standing and then he laid me down on a table and took pictures of my stomach from all angles.  My favorite part of these is seeing my insides on the screen.  It looks so cool as the barium goes down the esophagus and then splashes into the stomach.

Now I am all done with the radiology tests.  I still have the echo cardiogram and the right heart catheterization.  I am having a really hard time setting up the right heart cath.  First I called my primary to refer me to a cardiologist.  It took a few days for her to get back to me, but I was given a name and told to call them.  I called and tried to set up an appointment with them.  They said they couldn't because they needed a note from my doctor in NYC stating why I needed these tests.  I called the doctor in NYC and they said to me "Well you need it because it is a lung transplant evaluation."  Umm… I know that, but the cardiologist wanted some kind of doctor note or letter stating this.  She told me that they don't just send out notes and the cardiologist needed to call her.  So I called the cardiologist and she told me that it is not their policy and they don't do that.  So then I was confused as to what I was supposed to do.  She told me to call my primary and have them call for the information and have it faxed over.  So I called my primary again and told her all of this and she was like "Oh yeah we are your primary, we are suppose to do this for you."  I am just thinking seriously?  Couldn't someone have given me a heads up that this was needed before all of this?!  I told her I needed this done ASAP because I need these tests done before I go back to NYC on Sept 19th.  She said she will do it as fast as she could.  So now I am sitting here waiting, hoping that they will get this done before the end of next week.  I hate waiting on people.
 In the meantime I finally figured out how I am supposed to be getting this port cleaned out. I will not be shown how to do it myself.  A nursing agency will be coming in once a month and doing it for me. This sounds easier than me trying to stick a needle into my chest on my own. VNA is coming in sometime next week to do this.

Also I have been feeling sick again.  I started coughing a lot again last week.  My fever started up a few days ago and starting yesterday I am having a hard time breathing just sitting still.  It is too soon.  It hasn't even been a month since my IV meds were done.  I don't know what to do anymore.  I use to have about a month and a half of feeling good, then starting to slow down and then about a week of feeling crappy and then hospital.  All of that was over a four month period.  These last two hospitalizations have only been 2 1/2 months apart. So my disease is definitely progressing quicker than I thought it would. I was hoping I had a few more years until I actually got the transplant, but with the way things are going, I think it is going to be sooner rather than later.