Friday, April 23, 2010

PICC vs. Port

Pontificated by Unknown
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Angela's avatar

Angela · 780 weeks ago

Hey Ronnie! I hope you feel better soon. We are thinking about you and praying for a speedy recovery so you can get hitched!!
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Maggie's avatar

Maggie · 779 weeks ago

Hey Ronnie,

I was 10 when I got my port and am now 22 and still have the same port. I waited till I ran out of veins as well, mine just seemed to give up a lot earlier then yours did. I get a lot of your points, but the port is honestly a god sent, and should not restrict you in any way, unless the needle is in there, but luckily for you since you like to stay in the hospital for your whole IV course, you should not be rough housing when the needle is in anyway. I have a feeling once you get a port you won't be able to stop raving about it! I still have nighmares of the days of getting pics and the whole waiting period and them digging around. That feeling of them threading that damn thing still gives me nightmares. The port is easy and I have never felt like I am more sick, but i understand the mind block. We all have hang ups about something with cf. I hope you do some more research, just to get your mind used to the idea because in my opinion, it is the greatest invention in the world for people who need frequent IV use. I hope this stay goes well, and i hope you look into ports more seriously because they truly are wonderful.

~Maggie
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Paige Schreiber's avatar - Go to profile

Paige Schreiber · 779 weeks ago

Hi Ronnie, i feel the exact same way you do. I want to hold off as long as i can until i get a port. I usually get a perferal iv, and the last 2 times when i was in the hospital (at a different hospitla) i got a picc each time, and i wasn't overly happy about that because at my regular dr, i can usually get by with a perferal, then when it goes out i just get another perferal in the other arm. =) thanks for sharing. you help a lot of people. you are very inspiring to share your stories with everyone. They help everyone. Thanks get better soon. ~Paige
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Trish T's avatar

Trish T · 779 weeks ago

Hope you continue to recuperate and feel better quickly! I totally understand your qualms...been there, done that...but, as you can see MOST people with ports would highly recommend them. There are very minimal disadvantages and they are only there as a tool to HELP YOU--- if you can get over your personal issues. I had the same ones, but when I had no choice, it was harder for me--rather than if i could have chosen to have the surgery to put one in back in '94.

I think it all comes down to "control" for us CFer's. I know that in my life, I want to be able to always have a handle on this disease, as well as I can, and when exacerbations arise all of the sudden, it throws my life in a disarray. I like it when I can schedule my "tune ups" and surgeries and be able to have a say in my treatment. Our lives, to some degree, get so out of control when we least expect it that keeping everything as well under our own care and scrutiny is the key... of course, I know that ultimately, I am not REALLY in control. I have my faith and know ultimately He is in control. I just do what I can do.

Thanks for bringing this subject up. I'm sure it has helped others come to terms with getting one as well as educating people on the differences.
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Jamie P.'s avatar

Jamie P. · 779 weeks ago

I get the mind block, I had it when I got my first port and if you read my blog you know thw reasons I have know for not getting one are a little different. But the whole giving into this disease is something I experieced a year and a half ago when I had to be put on O2 when I sleep. I felt like this is the beginnig of the end if I need it at night it's only a matter of time before I need it 24/7. But I got over it when I realized I still had some control over whether I would get "sicker" and I felt better and rested because I wasn't lacking O2. So I understand the not wanting to give in to something that makes you feel like your giving into the disease, even if that's not true.
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Mandie's avatar

Mandie · 779 weeks ago

Ronnie I like your reasons for not getting a port. As for Courtney when she needs IV meds we go with a pic even though she is a tough stick. I am hoping that we never have to cross that bridge.
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Amanda's avatar - Go to profile

Amanda · 779 weeks ago

The thing is since the port is still somewhat optional you have that choice to wait until your ready (if you don't wait to long). I think of all the cf medical devices out there a port is one of those things that is mainly there for help...I look at it like the vest. Did I initially want to do it? no. I will borrow some of your wording here, a port for me helps me 'stay on top of my game.' I don't have anxiety over having to a get a picc placed. I had over 30 piccs and like i said destroyed my viens. The first piccs were a breeze to get, the last dozen or so were very painful and took many tries and lost of blood lose. If patients and parents both can get over the mental block that its "yuck" or somehow going to slow you down, or as if your giving in to your disease, then when the time comes to get one it wouldn't be so dreadful. Only get one when if warrants it of course. If you need IVs 2+ times a year or Piccs becomes to hard to get, then in my professional cf opinion its time to consider a port. I have never had it get in my way of anything. I will repeat myself so others reading can see, I have friends that are highly active, body builder even, and the port has never interfered. Sure some things you might have to learn to work around depending on its placement, but for the most part it becomes part of you... your little buddy!

hehe I got a shout out woot woot! I'm famous. lol jk
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Michelle's avatar - Go to profile

Michelle · 779 weeks ago

I do not have a port, nor have I ever had a picc (I've had 5 hospital stays, and all have been peripherals). I think of it like this.. I would like to get a picc (because frankly, I'm scared of even that at 27 years old *blush*) before I NEED to get picc'd. And I would like to get a port before I NEED to get a port. My theory is, if I am thinking of myself as someone who will beat the odds and live a long life, I would like to still have veins available for the other illnesses and issues that will come with natural aging long after CF is cured :).... So, therefore, I think getting a port now, and maybe giving up roughhousing or weights (to some degree) would be worth it, as it is, like anything else, temporary. Ports can be removed. If sometihng wonderful happens in the next ten years and CF has a way better control/cure out there, you can have it removed and go back to your old roughhousing self.
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Tabitha's avatar

Tabitha · 779 weeks ago

I didnt watch the video, but in my mind, you would inspire even more people if/when you decide to go ahead with the port. I understand the road block (from what others read), when a port was first brought up I said "NO WAY" but then a couple years passed and after reading everyone rave about it and getting more nervous w/ picc insertions (and I didnt even have bad veins) I was so ready for the port (though my dad was not, and said the same thing, "Now when you are not in the hospital or on home ivs, you wont be 'normal' or leaving the CF behind, in a sense). I imagine with your body (youre a bit thicker haha) you'll barely see it (if that matters to you).
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Tabitha's avatar

Tabitha · 779 weeks ago

I just feel that imagine how many people would really look up to you after seeing you "face your fears" or whatever, you always say that for the most part "we can control cf" with out treatments, our exercise, our taking pills and our hospital tuneups... piccs are just a tool, so a port is just a tool just like those who had to "succeed" to getting g-tubes for nutrition. On cf.com on a topic of g-tubes, Piper (always so elegant and articulate) made a great post about how most cf'ers (and parents) see these as milestones that the cf is getting worse and progressive (which of course, is the nature of the disease), but we should really look at these things (like ports and g-tubes) as another tool to beat CF!
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Tabitha's avatar

Tabitha · 779 weeks ago

(Last but not least haha)

After watching the video I have this to add... I understand it is something YOU have to prepare your mind for, but you should consider getting the port and succeeding and living with it the NEW challenge rather than the challenge of avoiding a port. And have you actually talked to your doctors about your weights and running and pushing it with the port? They will tell you YES or NO right?

And thanks for admitting that your way of thinking is flawed, otherwise I would take real offense to "letting cf win" just because I have a port ;) (and a g-tube) haha

You've been on the forums for years, you've seen the same arguments over and over,i t sounds like a port will be a coming, so definitely start now in opening up your mind. Now that I have rambled (its vest time) I really think if you think about how many patiens and parents would see you as inspiration to see you go through something that they too are afraid or dont want (yet), would probably help a lot of the cf community since you know like the entire cf population ;) haha...
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Rachel's avatar - Go to profile

Rachel · 779 weeks ago

Ronnie,
I stumbled upon your blog a few days ago and have been following your recent posts. A good friend of mine passed away last January from CF and since that time I have taken an even deeper interest in CF and helping to find a cure. I suppose I might have a slightly different perspective on PICCs than some of your other readers. I'm a PA who works in IR and places tons of PICCs a day. A lot of our patients have had as many as you and are still doing okay. One guy has had 14 in one year! I put PICCs in lots of people who have had a port and it no longer works and they have gone "backwards" in access options. I think all veinous access options have their risks and benefits, but PICCs are certainly at the lower end. I feel for you and your "PICC Massacre" the other day, not because I've ever had one, but because I've been at the other end struggling to get it in and feeling bad for all the times I have to stick and trying to get that blasted wire to go centrally! I plan to keep following your journey and I hope you have a shorter than normal hospital stay. I hope you are able to continue to get PICCs for as long as you need or until you decide differently.
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Christy Maxwell's avatar - Go to profile

Christy Maxwell · 779 weeks ago

Ronnie- As a CF parent, I had this same struggle with both my girls. When the doctor started recommending a port when the girls were in elementary school, I replied, "We're not interested. That is too 'CF kid-ish'". He looked at me quizzically, but let the matter lie. It was only after both girls began having trouble getting PICCs and Mid-lines that we decided to go for the port. It was just so hard to be in the room with them getting lines run and having the nurse or PA sweating bullets, not getting the wire to move, and watching my girls suffer in the meantime that made the decision a lot easier.
1 reply · active 778 weeks ago
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Kristina's avatar - Go to profile

Kristina · 778 weeks ago

That was how it was for me the first few years of my life. I ended up getting a port at age five and have had one every since. I replace them about once every 10 years.
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Christy Maxwell's avatar - Go to profile

Christy Maxwell · 779 weeks ago

Sarah has been very active even when the thing was accessed... Although, one time at gymnastics, the needle popped right out when she was doing a back handspring. And, while it was a little disconcerting at the time, and she approached her CF doc in a very accusatory fashion telling him, "You told me I would be able to do everything with a port," that is really the only strange thing we have had happen.
I was very concerned about the port mainly because I didn't want to insert something that could create another risk of infection. There was the whole mental CF thing and wanting the girls to be well, but there was also the very real risk that at some point a port can get infected.
So, I just wanted to say, honor your feelings... You're already very educated about the facts. And, I know that you will get a port at the exact right time. And, maybe you can have it engraved before placement, so it will be 100% YOURS! ;-)
Namaste',
Christy
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Tamara's avatar - Go to profile

Tamara · 779 weeks ago

The Video didnt'work here, so I didn't had the chance to see it. I am curious now ;)
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bobby's avatar

bobby · 779 weeks ago

getting a port would not hold you back physically.
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Kristina's avatar - Go to profile

Kristina · 778 weeks ago

I just made a big blog post about ports. Let me know what you think... http://cfstinabug.blogspot.com/2010/04/my-lovehat...

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