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Crap...it's been a long couple of days...

Tuesday, March 17, 2009
I woke up yesterday morning, earlier than normal, and noticed that my pajama top was very wet. That's not a good thing when you have a central line. I checked the line and actually saw the clear Flolan dripping from the clave (a little piece of plastic that connects the Flolan medicine to the central line that comes out of my chest). It wasn't a fast stream of fluid, it was just dripping. About every 5 pump cycles a couple of drops would come out. I've copied an image I found of a double-lumen Hickman catheter that is almost identical to the one that I have. Please note: this is NOT my chest! Contrary to popular opinion, I do NOT have a hairy chest!)

The liquid (Flolan) was dripping out from the clear thing (mine is blue) that is attached to the light blue piece on the above picture. So, I did some troubleshooting. The first thing I did was switch out the clave (mine is blue, the one in the picture is clear), but it kept leaking. So then I switched out the extension tubing that attaches the cassette of medicine to the Hickman catheter. But, it kept leaking. So, I figured that was it, I was going to need to go to the hospital. I hopped in the shower since experience has taught me that I wouldn't be getting any "star" treatment in the hospital. Anyway, after I took my shower, I had to switch out the dressing that I have to keep on the central line site. I noticed that the line was still doing this slow drip. So, I got dressed and headed downstairs. I kept checking the line and was very surprised to discover that it was no longer leaking! I have no idea why it stopped, but it did. After about 20 minutes of "non-leaking" I got hit with a huge blast of Flolan side-effects. It was pretty obvious then that I hadn't been getting my full dose of Flolan for several hours. I think the only reason I wasn't feeling very badly was because I was on a bit of adrenalyne rush from worrying about what was going on and the possibility of having to go to the hospital.
I called the nurse at Accredo, the company that I get all of my Flolan medicine from. I asked her if she had any ideas. There had been a leak, but I couldn't see anything wrong with the line. I told her about switching out the clave and the extension tubing. She suggested I take the clave off and look at the little piece of plastic where you screw the clave onto the Hickman line. I did and sure enough, there were two big cracks! That would explain the slow leak, it was positional. I checked the other line and there is a similar crack, but significantly smaller. I called my doctor and he said to come on down to his office at the hospital. I also called Nick to tell him what was going on (during all of this, Rod was on a flight from China). Nick told me to switch out the pumps and put in my back up medicine on the line with the smaller crack so that I would get a more steady flow of medicine. I packed a bag, assuming I was going to have to be admitted and I drove down to the med center. I saw my doctor, his PA and his PH nurse. It was decided that I needed to get a new line. But, it was not considered an emergency since the second line had such a small crack and it wasn't leaking. He told me that since I have been able to keep the same line for 4 1/2 years he felt confident that I would be able to keep things clean until my surgeon could fit me into her schedule. He told me to stay alert for any sign of infection and to make sure the second line isn't leaking.

So, next Wednesday, I'm going to the hospital and have surgery to get another line put in. Everyone has told me that I should be really proud that I kept the same line for 4 1/2 years, with no infections, no problems. It just doesn't feel like something to celebrate. Yahoo! I get to go to the hospital and have surgery! Yahoo!

Oh, and the smoke alarm went off several times last night and twice today. A couple of the alarms are broken. We had a technician come to the house today...he's coming back tomorrow.

Oh, and Haver is mad about something because he pooped in the basement...


Thanks for reading.

p.s. Please don't pity me or feel sorry for me. Contrary to the tone of this posting, I'm in a good mood and I feel tons better. Having Chris home this weekend, having Nick around to help me out and FINALLY having my dear sweet husband home from China is probably having a very positive influence on my mood.

OH, AND I went to school today and worked with the first graders. I wore green so they wouldn't pinch me! Happy St. Patrick's Day.

3 comments to Crap...it's been a long couple of days...:

Anonymous said...

Wow..I was thinking as I was reading...Oh No ..Rod is in China.

I am glad you got it stopped somewhat...but I am sure you are not ready to have surgery next week...You will do great:)) You are such a Trooper..Take care and keep an eye on that leak..

paula54 said...

Well CRAP! It's always something! I wonder why some of us have double lumins. I've only had single. Take care.

The Admiral said...

CRAP indeed.

When we were first married (actually, our second anniversary), Hooper was in Australia (in December, the height of the summer) and I was in Oklahoma City, and as it does sometimes, about a yard of snow dropped on me.

I was living in our luxurious trailer house. The water supply line into the house froze. I dropped an extension cord out the bathroom window and went outside with my hair dryer to thaw out the line (which I did, took about half an hour).

I hate it when they leave the country.

Crap always happens.