Uneasy.....

How to begin.....First - This post is really for me to keep a record of events from Friday until today and is probably very boring reading for anyone else. Friday was a very long and exhausting day.  I had three appointments back to back starting at 8:00am for lab work, 9:00am to have PICC line put in and 11:00am to meet with Jen to get ready for my treatments to start Monday morning. BigD and I were feeling pretty good because we arrived early and then the fun began.  So as not to drag it out, the new Cancer Wing had opened this past Monday and everything wasn't running smoothly yet - especially clerical matters.  I'm thinking we probably walked several miles the first two hours we were there without getting one single procedure completed.  After waiting almost an hour, the place to get my lab work done said we should go to the fourth floor of the new wing to get my PICC line put in and then come back for lab work. The nurses kept coming out and asking me questions after which I finally gave them my three appointment sheets.  After another wait, she came back and gave me my sheets back with the notes she had written on them which included a page number.  We were sent back to where they were supposed to do lab work but they didn't have an order so I said - you guys work it out, I'm exhausted and went and sat down. They kept saying how sorry they were and kept trying to work it out so I looked at the appointment sheets and called the pager number which turned out to be Jen's number. Woo Hoo! I told her what was going on so she apologized extensively explaining that it was clerical errors and to sit tight.  After about 5 minutes, her assistant came down and told us she was going to walk us through everything.  We were taken right back where the lab work was done after which she took us to where I was having the PICC line put in and told us to come straight to the 3rd floor of the new Cancer Clinic where we would meet with her and Jen.  Having the PICC line put in was very interesting to say the least. She explained everything she was doing and why it was necessary to have it.  Evidently Interferon and Chemo are both highly acidic and strip your blood vessels.  By the time she started putting the line in, she had put on hat, gown, gloves, mask, covered me with sterile cover, wrapping the bottom part of my arm with sterile cover and laying another sheet over the top of the  upper arm in a way that when she started, she had me turn my face into the sheet so as to keep the whole area sterile.  She stressed to me how important it was that anyone who flushed the line or changed the dressing on it should have on mask and gloves.  We finally met with Jen who apologized again for all the mix-ups.  She told us a Home Health Nurse would come  on Saturday to change the bandage and flush the line.  After waiting all day yesterday, I called the pager number again and the doctor who was on call for the weekend called me back.  She said she would try to find out what was going on.  She called back about 30 minutes later and said she  was waiting for the person from the home health office to call her.  She called me several times to let me know what her progress was and finally told me they promised someone would come today to take care of it.  She called me about 2 hours ago and asked me if someone came out yesterday.  I told her no and I still had not heard from anyone.  She was very angry because the notes said someone came out.  She called me again and asked me if anyone came out and I told her no so by now she was really getting irritated with them.  FINALLY we got the REAL reason no one had come.  Medicare would not pay for them to come just to flush my line and change the bandage and it would cost me out of pocket almost $200.00  OR I could come into the clinic and it would be paid for.  I told her I would come in.  She called me back and told me she had spoken with the person who was proficient with PICC lines in the Organ Transfer Clinic (which would be the only place I could get anyone to do it on a Sunday) and they told her to assure me that it would be fine to wait until tomorrow morning.  I told her it seemed fine, no swelling, pain had gone away and now just itched a bit under the bandage so we agreed I would wait until tomorrow morning when I go for my first treatment.  I wish every doctor I have come in contact with was like she is.  I will be sure to tell Jen how wonderful she was in staying in touch with me this weekend.  And to be clear - everyone was great Friday too - Jen was on target when she said it was clerical errors because of the new clinic opening.  Everyone kept apologizing Friday and tried to be helpful.  So Uneasy - yeah, I have felt uneasy since around 3pm yesterday when I started thinking no one was coming.