06 July 2008

Happy Birthday to me...

Ok so I have purposefully been postponing this post. Sorry.
The hospital was pretty traumatic this last time and I am just barely able to think about it clearly.
So this is a port-a-cath. It's a permanent IV placed under the skin in the chest. My friend Lauren did a flash demo of the port and the port access. It pretty cool, but be aware it shows someone poking a needle into their chest. Port Slide show.

So for someone with CF the port can be pretty important. For me it is a sad necessity. Picc lines don't work on me, I've had too many. I only need it when I'm in the hospital, but so far that seems to be at least once a year. Peripheral IV's don't work too well with CF, the drug doses we take are so concentrated that it burns the veins... literally.
On to the juicy details...
So I access my port on Mother's Day. It is sluggish but seems to work ok. The next day I go into the hospital. The port is even worse. But seems to work ok. By day 3 its basically not working at all. It takes 3 minutes to flush the port. The pump has no problems with it, but flushing with 10cc syringe just doesn't work.
Now its time to get serious. I tell the nurse we should probably re-access since it seems like it might be poor needle placement. It takes her 3 tries and she can't get the needle placed. Time for drastic measures. Fluoro.
They take me down and decide they want to pull my line straight (its had a loop in my vein for about a year). So we prep and I tell them I want to be awake for it. Just local. So the procedure is essentially a heart-cath, without going to the heart. They inserted a tube in my groin vein. Then ran up to the end of the port line with a lasso and grabbed a hold.
Tug, tug, I'm feeling them pull on it. Its not feeling so well. I can feel the tug in my neck. For some reason the line doesn't want to come loose. Well They decide to try a contrast flush on the port. It takes the flouro nurse 3 tries to get a needle in right... My chest at this point was a bloody mess.
They flush with contrast, its slow but runs perfect. The contrasts flows right out of the end of the line. It seems faster, and so we decide to leave the needle and close up shop (meaning my groin cath.) The loop still there, the needle in place but the line performing poorly. Happy Birthday Eve Eve!!
So birthday eve morning, TPA day. They run TPA ( a anti-clotting agent) into me for 3 hours trying to get the line to open up. It doesn't open. On the plus side I did enjoy Shaun of the Dead during this 3 hour tour of TPA.
So on the birthday, I decide Im feeling better, its only been 10 days but I do feel better and I am ready to go home. So I get discharged.
Day 2 at home and my line is completely closed not working at all. I call the doctor and we decide instead of doing surgery this close to my hospitalization we should wait, and I can finish Cipro on oral drugs.
So this is my traumatic birthday hospital celebration.
Lessons learned:
  • More dedication in my monthly port flushes. I am good but there have been times I went 5 weeks instead of 4.
  • Nurses only get 2 shots at the port before they have to find someone new. I worry that I scarred a new nurse that was watching when they were trying to get it to work. Poor kid.
  • Flouroscopy is cool to watch.
  • Going into shock in the flouro room is not good and is not fun.
  • I talk a lot when I'm nervous. I am sure that I was completely entertaining(or annoying) to the medical staff during the procedure. I don't think I ever stopped talking, even during the shock.
  • Blood pressure can drop a lot during shock, and it doesn't help the shock at all to know and see it.
  • It takes me a while to process this kind of stuff to be able to even write about it.

The good news, I had fantastic sushi the night of my birthday at this place right by our house that we love. And this was on my plate.
The sushi chef is a true artist. This is one piece of carrot cut and twisted to look like a butterfly. I am glad that there are beautiful things to live for each day, since some days I wonder why I am still trying. And especially after hospital experiences like that last one.


Somer Love said...

Um so we have talked since your hospitalization and there was no mention of this experience. WOW I am glad you are ok now. So I have to ask are you going to have to pull that line? I hope the Cipro worked for you!

Also stay inside the air is SHITTY!!!!

Cara said...

Hey there! I found your blog through Somer's and I just wanted to introduce myself! I'm a CFer also and I love meeting people in the CF community. So sorry to hear about your bad hospital experience. I love reading that you are such a fighter when it comes to your treatment in the hospital. I've traumatized quite a few doctors by being feisty when it comes to my treatment. :)

wandering nana said...

Thanks for letting us know what when on. Sorry about your birthday, but what a great place to go for your birthday. I love that place... and that butterfly.. did you save it? Maybe you could press it in a book "P

Genevieve said...

Lurrrve the butterfly! I'm a sushi addict. Thanks for stopping by! Hope ur feeling well.