Hey, I'm Jason. I'm a chronically-ill-super-freedom-loving-medical-self-journalist.
Just when I thought this couldn’t possibly be any more fun.
On Friday, I had outpatient surgery at UCLA for the insertion of a “permacath.” This catheter, sometimes called a Hickman Catheter, is a set of tubes the docs install to make dialysis possible. It’s my blood faucet.
Surgery was relatively uneventful. The aftermath was a little messy. I basically threw up (probably from the anesthetic) all the way from Westwood to my home. Prisoner-tracking Bloodhounds could have easily tracked my progress up 5 miles of Wilshire Boulevard.
So now I’m ready for dialysis. Physically. Tomorrow’s appointment with my new nephrologist will determine start date – possibly this week.
I’ll post a video of “Dialysis: The Miniseries, Part 3” next time. For now, I’m calculating the myriad ways of cleaning one’s body without showering – the permacath has to stay dry, permadry.
And for a closing thought, I just read an account of a gentleman with a permacath and a dog. The dog chewed through the plastic tubes. Take a look at the graphic above and consider that for a moment. He survived.
I know what you guys are talking about. I had ESRD due to FSGS in ’06 then got a port placed in, got a fistula on lower left arm. Then recieved a Kidney so they ligated the fistula. just two months ago my tranplanted kidney failed due to FSGS coming back. I had a quintin put in. Thats in the neck, then a port in my chest. The port was infected then i had to get it removed then another quintin then another port. then another av fistula on my bicep. Its a pain in the ass but its better than dying!!
Man, the absolute worst thing I’ve ever experienced was getting my very first Permacath put in. I go in and they sedate me, but in a completely half ass way, and instead of not really remembering it, I was just slightly buzzed. Just awake to verbalize my pain and ask for more drugs but apparently not awake enough to say it forcefully enough. Anyway, that was excruciating but luckily the second time I needed one I was out under general anesthetic. Thanks for writing about this man, it’s something a lot of people know nothing about.
I had one for a while it sucked, I’d really recommend getting a fistula as soon as possible. It’s a lot less scary, mine fell out of my chest about 5 months after it was in. It wasn’t life threatening just spooky and kind of gross. Fistula with buttonholing is the way to go. It takes a bit of getting use to, but it’s not that bad plus it allows you to get it wet too.
Thanks for writing, Chris. I just learned about button-holing today and it sounds pretty good. I can’t get a fistula until I’ve been cleared from my infection for 6 weeks, so I’ll have to live with this for another 4 months or so. I have to tell you, the image of a catheter falling out has stayed with me for the weekend. That must’ve been a trip. Take care.
My friend Bobby has a catheter just like yours. They had tried putting ports in his arms, but they both eventually failed because his circulation was bad and the arteries in his arms are diseased. Because of that, he has lost two fingers on each of his hands. So they are back to the chest port, which seems to be much more reliable. Now they just have to stick him for an IV and for blood samples.
He is having a very rough go of it right now. I wonder if you could take a minute to leave a word or two of encouragement for him at the blog we keep. It would mean a lot coming from someone who can sympathize with his situation.
Thanks and I hope you are well!
Here’s a link to a product that might be helpful with the showering.
Hang in there!
Hang in there, Jason! Hugs!
Ugh, ugh, ugh. So sorry about the barfing on the way home. Wicked frickin unpleasant. The dog thing is hilarious in a very scary way. We are thinking of you in Chi-town. Much love!