Sunday, April 5, 2009

Self, Shout-Outs, and Sammy (Of course!)

Hi guys!

So first off, a couple of people have asked me lately about the arm port and how much it "shows" when it's not accessed. I thought I'd share a couple of pictures since right now seems to be the first time in FOREVER that I can actually showcase the darn thing without a needle sticking out of it. Fun, fun. Anyway, here is is, for your viewing pleasure. (And for those of you who might want to see it accessed, well, I have photos of that in my archives from 2008.)

1) Close up of the port site (keep in mind that it looks angry right now because my last IVs just ended a week or so ago):

2) View of my arm normally (notice that it's more or less invisible, unless you're looking REALLY hard for the tiny bump):

3) Me, just so everyone trusts that this really is my arm:

4) Sammybear, because really, why not?

Bonus points if you can spot the O2 tanks in that last shot, btw ;)

In other news, I'm changing up my routine a bit. Mainly I've started separating Dnase and HTS, which isn't thrilling since it makes the third treatment a requirement instead of optional. Oh well, I guess I knew I should be doing three anyways. And I've also started a trial run on the PharmaNAC fizzy tabs. I ordered a month's supply (assuming I do 1 tab, twice a day, which is what my doc recommended). I doubt I'll see much change in a month, so I'll probably need to extend my testing time. I've know some people who swear by this stuff and then others who claim they saw no change even after a year. But at this point I figure I need to keep trying everything I can. I'm not looking for a miracle cure (although if anyone's offering one, I'll take it!) but I need all the help I can get just to break this infection cycle. Blah.

And my other big news...(drumroll)...I gained 2 pounds! This might not sound like much, but considering my doctor has been encouraging me to exercise LESS just so I can preserve more calories, 2 pounds is a breakthrough! And I'm still hitting the cardio - so I managed to gain AND stay on top of my game exercise wise. Very proud of that.

I just realized this is a very self-congratulatory post. Which frankly I'm okay with, because we need those every so often. But before I go too far overboard with the me me me thing, can I just say how much some of my fellow CFers have been blowing me away lately? Seriously, I know one who has been super sick and continues to reach outside of herself to everyone else and leave encouraging comments on my blog (and others) even though I know she's going through a rough time with lots of changes, one who has been going through a hellish road with sinus surgery and still sounds less whiney than I ever do, one who lost a dear friend and decided to change it into a beautiful project to help other cystics, one who is currently on IVs and has some other serious health complications but never seems to let it get her down, one who brought her FEV1 up from the start of transplant range all the way up to over 50%, one who selflessly allowed his amazing wife to share his transplant story start to finish for the benefit of others, one who is participating in a study of an new inhaled version of an antibiotic to help all of us, one who posts amazing articles and helpful info to her blog daily, one who was brave enough to post a great glimpse into the "raw" side of CF on her blog last week, one who powers on in the face of huge obstacles from his health and from outside sources, one who I recently corresponded with who is currently putting us all to shame with his amazing exercise routine (and putting me personally to shame with his awesome attitude), and several -- both pre- and post-transplant -- who blow me away with their ability to be amazing mamas and awesome people. This is in addition to the countless other cystics I know who are just plain unbelievable. Seriously, I can't imagine a more selfless, inspiring group.

I don't mean to sound sappy, but honestly I really am in awe of these people. Especially because they're not afraid to admit, collectively, that CF sucks, that it's hard work, and that acknowledging that does not in any way make you less of a fighter. And I'm really proud to count myself among their ranks.


  1. Hey Piper. Thanks for the pics. I'm going to ask a really ignorant question - what's the difference of having a port in your arm vs. a PICC line (I realize PICC's don't last as long but I don't quite "get" why). Thanks for the education!!!!

  2. Oh i forgot! Congrats on the 2lbs. That's super impressive!!!! Keep me posted on the NAC. I'm crossing my fingers that it helps you!!!!!!!

  3. 2 pounds 2 pounds!!! You go fatty LMFAO!!!!!! So kidding! That's awesome you gained...keep it up hun!

    We love our cyster too =D

  4. Congrats on the weight gain! Woohoooo!!! I agree with you whole-heartedly; CF'ers are a strong, amazing group of people! Sound like each and every one of them are kickin a$$ & takin names! LOL!

  5. I think that's really good to separate the DNASE and HTS. I know at my clinic they suggest to do them in different treatment times because they can be very irritating if done too close together.

    Your port looks awesome and I'm jealous. They stopped offering "arm-buttons" at my hospital and will only do port-o-caths. I'm holding out though. So far I've had over 30 PICCS. At some point I know that I'm going to have to bite the bullet.

    Am I wrong that the main difference in a PICC and a port in your arm is placement in the artery and you don't have to clean a port when not accessed?

    Awesome post! You realy wear your heart on your sleeve and I love it. I'd also like to meet the guy who has an awesome exercise routine and attitude so I can challenge him to a dual!

    You're the best Piper. Keep it going! Can I get a Team CF on three? Ok, maybe I took that too far....


  6. sheesh, ronnie. i hope you were kidding there, or that the rest of you are better at recognizing yourself than this guys is!

    as far as i can tell a port in your arm has all the same advantages as a port anywhere else except that you can't access it yourself. amy, i got mine because of a really unfortunate incident where a fellow/resident actually put a picc line in my artery, where it stayed (despite tons of signs, migraines, constant complaining from me that something was wrong) for three days until the left side of my body went numb. after that, i was DONE with the whole picc thing. but i've always had, um, uncooperative veins.

    my port has lasted 9 years so far. i'm hoping it will last for a few more at least. it is threaded up through my basilic vein. maybe they sometimes put the arm ports in arteries though...i really don't know.

  7. that's great you gained two pounds!! woohooo!! and i must give you mad props for being a lawyer, hello i didnt even get through community college. lol. i must admit i was never the school type. also i just finished with the inhaled levaquin study and in two months will start the cipro inhaled study. lets see how that goes!! congrats on the weight!!