Friday, November 13, 2009

Peripheral Vision

Okay, so if you've been following this blog at all for the past few weeks/months, you're probably familiar with the event that I've now termed "The Great Port Debacle of 2009" and its subsequent less-dramatic, but equally annoying, little sibling, "The Not-Quite-S0-Great PICC Clot Fiasco of 2009." These two events happened within a few weeks of each other (although the Port Debacle had, in fact, been going on for several months prior to its actual diagnosis) and made for a very exciting, if somewhat over the top, end of summer/beginning of fall.

Ah, memories.

Anyway, those days are long gone, and, like any good CFer, I've pretty much moved on to the next big thing at this point. And that thing just happens to be . . . (cue the drumroll please) . . .

peripheral IVs.

View of my arm, circa 1989 (er, I mean yesterday)

So call me old fashioned. Call me old school. Heck, call me retro if you must, just please don't compare me to the Lower East Side Hipsters when you do it. The point is that my veins and I have been partying like it's 1989 for the past week and half or so, and weirdly enough, it actually hasn't been too bad. I mean, aside from the hair bands, the teased bangs, and the Saved by the Bell reruns, we've been managing just fine during our little trip down memory lane. In fact, to date I've had only 4 peripherals in 12 days, and considering that one lasted less than a full day and hardly counts, I'd say that's a pretty decent record. Especially when you add in the fact that most of the placements have been home runs, meaning the line is placed on the first try. Actually, scratch that -- it's not just "pretty decent", it's all out amazing.

I'm pretty sure that I owe this miracle of vein cooperativeness to my 9 1/2 years of portdom. Prior to getting my port, my veins had pretty much put out the "closed for new business" sign when it came to either peripherals or PICCs. Rolling, spasms, collapses, general refusal to give a blood draw -- you name the game, my veins have played it. I'm pretty sure I used to hear an audible groan when I walked into the IV lab for my placements, and nurses have been known to change shifts just to avoid my "veins of terror", but try telling that to my new awesome home health nurse, Janice, and she'd probably just laugh. Because as far as she's concerned, 9 years later, my veins (while perhaps a bit overused and overtired) are nothing more than petulant children waiting to be coaxed into line. What a difference a decade makes, I guess.

There's a lot of debate raging right now amidst my doctors about whether I should remain catheter-free or go for another port. Pre-clot we had agreed on a course of action, but now it all seems up in the air. The thing is, though, I'm suddenly a LOT less anxious about the prospect of going into transplant and beyond without a permanent IV line, now that I know my veins have managed to resurrect themselves to some degree. And it makes me, in retrospect, all the happier that I got the port placed when I did, because I'm thrilled that I managed to save at least some use of my veins for later -- after all, as permanent as a port might seem at the time, you never know when you're going to lose it.

For now, though, I'm happy just to be the old-young cystic with the outdated IV in her forearm. I haven't managed to score one of those nifty IV boards they used to give me at Children's Hospital yet, but it's still pretty darn cool to know that I don't have to get a PICC pulled at the end of all this. And yes, I used the word "nifty" without even a trace of irony, but that's totally allowed when you're going peripheral . . . or so I've been told.


  1. sorry to hear of your troubles! i've been experciening many of the same problems of late, resulting in quite the week. here's the story i wrote at a forum i frequent about my ports/PICCS/and the amazing IR results: (be sure to check out the picture below for the before/after)

    "The subclavian vein collapsed 3 years ago because of the rigors of daily IV meds via a chest port. At first, we opened up the vein with balloons. Worked for a few weeks. Closed back, we placed a metal stent in the subclavian with minimal results. The vein only remained opened for a month or so before reverting back to its old self. Even with the line of the port inside the stent, not even The Hulk could have flushed the line. Blood draw was impossible and it became apparent that even trying to thread a PICC line up the right side of the arm was a fools errand.

    So for 3 years my right arm suffered during weight-lifting; swelling, turning extremely reddish/blue. Some of my pulm docs even hypothesized that the loss of normal blood flow could have been a contributing factor to the dramatic rise in my shortness of breath.

    Last year, we again tried to open it up. Went in through the right arm and femoral, and once the lines hit the stent, they were stopped cold. For about 4 agonizing hours, the IR doctors tried everything to open up the vein, with no success. The pictures of the bruising speak for themselves. (Don't have them ATM..)

    Flash foward to last Friday, in which I've been admitted because of yet another CF excerbation. Because the right arm has been ruled off limits for PICC lines, we've been relying solely on the left arm. And on Friday, the left arm finally gave out. My last vein closed off... luckily, the IR doctor who had done all my previous work stepped in and said he would take care of me first thing Monday morning, the rest of his schedule taking a backseat.

    He said he was going to put a port on the right side, the closed side, and open up the vein. I smirked at him. Not gonna happen; not even my pulm docs think that's going to happen. Indeed, my pulm docs were adamantly opposed to the idea of a new chest port considering the problems I had with the previous one. Having no suitable access for 2+ weeks of IV therapy was a non-starter, though, so they agreed that the right should be tried first. The thinking that the left side should be saved at all costs for when the eventual transplant is needed.

    So Monday morning... During a 6 hour procedure (in which I was awake the whole time) the IR doc astonishingly placed the port in within a hour. Next came the fun part. Balloon after balllon after balloon of various sizes trying to force the clot out so he could squeeze in the new stent..."

    The outcome:

    ***got back home this evening, friday the 13th. yesterday, however, a 3rd stent was placed when, during a venogram, narrowing was already apparent in the newly opened vein. as a result, i've been told to visit IR monthly for regular venograms and/or possibly balloon angiplastys... we shall see how everything turns out.

    btw, to those on tobra IV's, have you all been switched to just once daily? instead of the usual q8? i'm loving it; evidently it's more effective in just one huge dose and less toxic than the q8 routine... the "hand grenade" IV i received tonight is hilariously huge! almost the size of a damn baseball!

    anyway, i'm a longtime admirer and i really enjoy reading your blog! best of luck!

  2. WOW you're a rock star to put up with those peripherals. My vein is STILL throwing a tantrum nearly 2 weeks after a weekender peripheral (waiting for PICC nurse on Monday).

    So glad things are working out. You have such an amazing attitude - I'm going to have to pay you for therapy when it comes time for my TX.

    Lawyer/Therapist - can you think of a more powerful woman?


  3. When I first saw the picture, it looked like the IV was hooked up to a cup of starbucks coffee...thanks for the unintended laugh :)


  4. Peripherals and I don't get along. I blew one in about an hour and the next one lasted all of 10 hours. Luckily it was just a drug study so they pulled it and I only needed 1 more stick for the study to be done. Kind of miss the days of being able to use peripherals and have them last for 5 days or so.


  5. You have (as always) such an interesting perspective Piper! Being late to the CF game (only dxd about 20 mos ago) I haven't endured many of the long term CF battles with IVs. I'm sorry to hear you're having issues with veins, but I'm very glad to read your upbeat attitude! Periph-On Cyster!

  6. you ROCK that peripheral IV like a champ.

  7. "going peripheral"...Whatever works, right??... hilarious! I love your writing style!

    I've never had a port, but several piccs and iv's, of course.

    I had an awesome IV this last admittance...lasted 5 days (and counting, since I was discharged b/f it blew!)... It's like gold when they last!!! Ahhh, the little things :)

  8. Really very happy to say, your post is very interesting to read. I never stop myself to say something about it. You’re doing a great job. Keep it up and you can easily look at this article Auto Clicker for Roblox