LymeNet Flash: portacath or picc line??

Posted by trailsgrl (Member # 7285) on :

HOOOORAY!
Does this mean you beat the insurance and we should all toast to you and your perserverance or that you will be paying out of pocket in which case we should all send you our spare change????

I liked my PICC as I discussed with you. Port a cath I think means no swimming or baths and that would have been very hard for me. And it sounds like it would be hard for you too.

Hope more respond!
So glad for you!
Trails

Posted by duramater (Member # 6480) on :

Have had both PICC & Port-a-cath and port wins! It is all totally under the skin so when it is deaccessed (no needle in) you can do anything! Bath, shower, swim. Those are all things you can't do or must do with EXTREME care with the PICC. Also, less chance of infection (not that it is great in either case) with under-the-skin port. Its pretty minor surgery to get port in and out (no general anesthesia) and takes a bit of healing time but overall, I vote port.

Good luck with either and with the subsequent IV treatment.

Posted by timaca (Member # 6911) on :

Thanks everyone for your replies thus far...

To those who use the port-a-cath...how long did it take to get used to the shots (as far as them not hurting??)

To both port and picc users...what did you notice with it in? Could you feel it? How was sleeping?

I think I will be on IVs for at least 6 weeks. It may go as long as 6 months (I'm waiting for a call from my LLMD to clarify that--that's what he said in March)

My rocephin infusions will be 3 days on, 1 day off...

I would LIKE to be able to swim, and do weights, for I still do that (though no where near like I used to). I know that a PICC line would restrict that, where a port would not...

The port would leave a scar (and I have dark skin that scars easily)...maybe some kind of bleaching creme when it's all said and done? But, the scar is the least of my worries....I guess I want what will be best for me...one is least invasive, but slightly higher risk and more restrictive (picc) and the other (port) would allow for more exercise, but is more invasive. They both seem kinda scary to me....and I'm not one that gets scaried easily...but I've just not ever had anything like this, and it is kinda worrisome to me...

No, this doesn't mean that my insurance has approved this. I will be paying out of pocket, so please send any spare change my way...

However, I did send my insurance a letter today along with supporting documents...for a total of 24 pages! So, we'll see what they do with all of that! I can't imagine that they will win this...but they sure are trying not to pay!

Thanks for your input....please add other thoughts if you would....Tina

Posted by timaca (Member # 6911) on :

to clarify....I think the kind of port I'd be getting is the kind where I give myself the shots every day....(or 3 out of 4 days)...I don't think I have a "needle" sticking out of me that I give the shots into...I gotta check into that.

Any of you have the kind where you give yourself the shot every day?

Tina

Posted by arg82 (Member # 161) on :

Tina,

I think maybe you're getting confused. Rocephin is available as intramuscular shots or as IV infusions. IV Rocephin goes in through an IV line and is not a shot. It's possible to do IV push with Rocephin where the antibiotic is in a syringe and you push it through the IV line over the course of 5-10 minutes (I've never done it this way so I don't know much about that).

With port-a-caths in your chest (or arm), there has to be a needle in the port in order to do infusions. The needle is a special needle that is pre-bent at a 90 degree angle and has tubing attached to the end of it (you can see a picture of them in the Port-a-Cath (catheter) post). Getting the needle put in isn't bad, especially if you use EMLA (numbing) cream on the port for about an hour before the accessing is done - then you don't feel anything.

Maybe you should look more into what your doctor was going to order for you.

--Annie

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Posted by trailsgrl (Member # 7285) on :

My personal experience with PICC was pretty good after first line was improperly inserted and had to be removed.

I suggest you tell them to use pediatric insertion and tubing. Also take valium or something when yougo to get it put in, just to relax you and drink TONS of water for full veins.

I didnt feel mine after about a week or two. I could not swim as in doing STROKES but if you get the sleeve you can hang out in the water and putz around. In the summer this can be crucial.

Also crucial to me was the epsom salt baths when I herxed. Dont know how to do the several times a day baths with the prt o cath?

I liked my Picc and it became a part of my body that I felt was good and healing. I had it in for 8 weeks. My partner pushed the medicine in via a sirynge everyday, but I could have done it myself. Just nice to have someone there.

Home health nurse came once a week to change dressing.

Except when I was hospitalised for 5 days due to herx, I worked throughout the entire time, full time and commuted an hour each way by car! I could NOT do this NOW!

That is my BRIEF story for you. Sounds like there are LOTS of other posts and info you though!
I am collecting the change for you now!
Trails

Posted by lightfoot (Member # 2536) on :

Hi.....I have had both and would vote port hands down......no question!! A port can be kept in place a looooong time which can be very beneficial!!!

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C O L O R A D O * S U P P O R T * S Y S T E M
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[This message has been edited by lightfoot (edited 07 June 2005).]

Posted by timaca (Member # 6911) on :

thanks for everyone's replies...and especially for the change being collected to help pay for this!

I was under the impression, that I'd be putting the needle in and out daily, so I'd be "deaccessed" every day. Upon reading here, it seems that most people don't do that...so now I'm wondering if my doctor meant me swimming once a week, instead of every other day or so!

My internal medicine doctor (who is just learning about lyme along with me) suggested the picc line first, stating that I could then do the port if the picc doesn't work...but if a port doesn't work, that is a bigger issue....

And my LLMD didn't call back...so I'm not sure which he'd suggest...

Tina

Posted by arg82 (Member # 161) on :

Most people stay accessed for up to a week at a time. After a week, the needle needs to be changed so you de-access, have a little break, and then re-access for the next day's infusion. If you're doing 3 days on, 1 day off, you'd stay accessed for the 3 days and then de-access for the day off and then re-access for the beginning of the next three days of infusions.

My opinion (and it's only my opinion) is that a port would seem to fit you better. In my opinion, pulsing medicine is one of the biggest reasons to get a port over a PICC. You'll be able to have a day every 4 days when you can live your life normally - go swimming, shower normally, etc. With a PICC, you would really NEVER be able to swim, so if swimming is important to you I'd say go for a port.

--Annie

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Posted by timaca (Member # 6911) on :

thanks all....I talked with both docs today (the llmd and the surgeon)...the llmd thinks I'll be on IV for 3 months. They both thought I could access and deaccess every day, while the home health nurse thought that would be a pain in the chest, (literally) and wouldn't recommend it.

SO...I'll think about it a bit longer, and then decide. It seems like those of you who have had both vote for the port....

I'd rather not do either...but I'd rather not have lyme...since I have lyme, I have to do one of the above (or at least I have 2 docs saying IV is best for me)...so I'll go think for awhile and decide.

Thanks so much for your input!

Tina

Posted by lymesux (Member # 6248) on :

Hi,
guess i'm a little late to weigh in here - though i'm not also the best person to talk to, everyone here pretty much had good experiences (which is great), BUT i like to make sure that I let people know my experience.

I have had 2 picc lines and 1 port - first picc line I had sepsis which i believe was due to the nurse not cleaning the site well enough as I kept asking why it looked so (yellow). so i ended up in the hospital and had to have a picc inserted into my right arm - that picc was fine.

A year later I had a picc for 4 months until I got thrombosis(i think thats the name) - no reason was ever given and it was pulled.

Then I had a port put in thinking it would be very nice since it would be under the skin - well every time I was accessed for some reason I about jumped thru the roof in pain and the pain lasted (radiculopathy) for days.

Turns out a nerve was cut I suppose when the port was put in - almost a year after its been out and i still have pain and alot of numbness plus yes a scar (two).

But I would consider getting another picc or port if I had to (might have to) - i think the biggest difference is length of treatment, I had the port in for 8 months - and would have had it longer if i could have handled the pain - but the longest i had a picc was 4 months. I think to have a port inserted you might want to make sure that insurance approved the surgery (its expensive as i got the bill for both of mine) and the meds - because for a short term amount of IV my 'personal' opinion is a picc.

Ok i've rambled enough - no matter what you choose, I wish you luck and in no way did i tell my story to scare you - just that when i was making my decision i know i would have wanted as much info as i could - otherwise ignore this post, k?

Posted by timaca (Member # 6911) on :

thanks everyone for posting. I have decided to go with the picc line. I think I was more mentally prepared for that, since I've thought about that more.

We'll just see how it goes...if things don't work out, I'll do the port. I am blessed to have a couple of wonderful, understanding doctors to help me through all this!

Can you sleep on the side where your picc is? That is the side I sleep on, for my other side (right) hurts in the shoulder (probably lyme..but who knows at this point? )

I figured my insurance might do better authorizing the picc (I am still battling that one)....

So, tomorrow I get a picc line...thanks for all the support everyone.

Any good names for my picc line??

Tina

Posted by arg82 (Member # 161) on :

Glad you made a decision you're comfortable with. It will probably take a little while to get used to the PICC line and you will probably be sore for a little while after it's inserted, but after a few weeks you probably won't even know it's there anymore! Once you get used to it, you should be able to sleep any way you're comfortable, but listen to your body and if it causes pain, don't push it.

I highly suggest getting a Xerosox for covering your arm during showers and even to dip in the water for a little bit here and there (no strenuous swimming, but it's nice to be able to get in the water for a little bit on hot days).

I don't have any good names for your PICC line but my port-a-cath is nicknamed Winnie the Port. And in keeping with that, my IV pole is Piglet and my portable IV pump is Eeyore! (Maybe I'm taking this a little too far, but the small pack that holds the pump is nicknamed Roo and the bigger backpack it goes into is Kanga. )

Good luck tomorrow! I'll be thinking about you and hoping it goes well.

--Annie

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