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Hickman or Port-A-Cath? Who's had or have one?

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LupnerRN
Regular Member
Joined : Sep 2008
Posts : 350
Posted 9/15/2010 5:45 PM (GMT -7)
After 2+ years of oral antibiotics and herbals; I've plateaued at about 60%. Still too fatigued to work.

My LLMD has convinced me it's time to try IV abx. So I'm waiting to get new IGeneX labs for my insurance to authorize, etc.

So, I'm very curious who's had a Port-A-Cath and who's had a Hickman line. I need to pick from the two. I'm sure I'll need it in over a year.

I'd appreciate hearing your experiences and thoughts.

Thankx and God's quick healing to us all,
Lisa
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nasalady
Veteran Member
Joined : Sep 2009
Posts : 1176
Posted 9/15/2010 6:21 PM (GMT -7)
I have a port-a-cath; I've had it since late April, although I didn't start IV Rocephin until mid-June. I did Rocephin for 7 weeks but Blue Cross refused to pay a dime so I paid out of my own pocket. Then I had a glitch in my disability payments and had to stop the treatment.

Bottom line is that I haven't had any trouble with the port-a-cath. If I don't have a Huber needle in I can take a shower just like normal....if I do have a needle in I cover things up with plastic and shower anyway. So far so good!

As long as it's in there it has to be accessed and flushed once a month though....I did the last access/flush myself, although you can go to an ER.
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LupnerRN
Regular Member
Joined : Sep 2008
Posts : 350
Posted 9/15/2010 6:44 PM (GMT -7)
thanks so much for info nasalady!

What glitch did you have with disability? I think there's a way to appeal the insurance company to pay for meds. Have you done that?

Lisa
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Razzle
Veteran Member
Joined : Aug 2007
Posts : 4415
Posted 9/15/2010 9:14 PM (GMT -7)
I've had a PICC line for over 2 years, without any problems with it. The line itself has been replaced every 6 months, but always have been able to use the same site for the new line. I'm seriously considering getting a Port once I no longer need the PICC for daily use, because blood draws are very difficult without the PICC for me.
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nasalady
Veteran Member
Joined : Sep 2009
Posts : 1176
Posted 9/16/2010 1:38 PM (GMT -7)

LupnerRN said...
thanks so much for info nasalady!

What glitch did you have with disability? I think there's a way to appeal the insurance company to pay for meds. Have you done that?

Lisa

Hi Lisa,

My CA short-term disability payments suddenly stopped, and they said I needed an update from my doctor. I tried to get one of my doctors to fill out a form and send it to SDI but the same week I gave him the forms, he and some of his colleagues in the same building moved the office several blocks away and they LOST the forms or something! So I was without the disability for about a month, but I do work part-time so we had some income, fortunately!

Eventually it got straightened out and the disability payments started up again....

As to Anthem Blue Cross, I have appealed, twice, and been denied twice. I'm now planning to file for an IMR (Independent Medical Review by the state of California), and I have Senator Barbara Boxer's office promise to help with this, so I'm still hopeful.

I wish you better luck with everything!
JoAnn
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LupnerRN
Regular Member
Joined : Sep 2008
Posts : 350
Posted 9/16/2010 9:13 PM (GMT -7)
razzle, wow I'm impressed you've been able to have PICC lines that long! What IV meds are working for you? I will be starting with Rocephin. This is bitter-sweet for me because I wanted to start IV meds last summer. My doc thought I was progressing with orals. I felt I was plateaued and started all herbals around last christmas and never wanted to go back to abx. Now, I'm feeling desperate again and willing to try the big guns.

Nasalady, do you work at Moffet Field? I was in the Civil Air Patrol, if you've heard of that, and done some training and airshows there. Anyway, so glad to hear your pushing the system, but sorry to hear about denials! Medical Insurance is such a scam. They have nothing to do with helping people. I've used a lawyer at Boxer's husbands law firm in Oakland. They do a lot of good stuff there. I'm glad your still getting SDI though, it pays more than SSI. I got approved the first time I filed. A true miracle. I'm an RN which helped to know what good medical terminology to use on the forms. How long did your blue cross pay for IV med?

Thanks and may IV meds never be needed to treat Lyme again
Lisa
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nasalady
Veteran Member
Joined : Sep 2009
Posts : 1176
Posted 9/16/2010 9:44 PM (GMT -7)
Hi Lisa,

I have heard of the Civil Air Patrol, and know Moffet Field (and NASA Ames) well, but I support a NASA mission run by Caltech and JPL in Pasadena; prior to launch the spacecraft was assembled, the instruments installed and everything was tested at Lockheed Martin just by Moffet Field, so I was traveling up there every few weeks for a while to run tests. I like NoCal better than SoCal, but maybe I'm biased....I was born in Palo Alto, LOL!

Actually Blue Cross never paid a dime for my IV Rocephin....they denied me from the start. They have been good about paying for my other Lyme meds though, even expensive stuff like Alinia. And they've paid for all abx (except Rocephin) no matter how long I'm on them. I've been on zithromax since March or so and they've only questioned it once, then gave in and approved it to continue.

Take care,
JoAnn
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Razzle
Veteran Member
Joined : Aug 2007
Posts : 4415
Posted 9/17/2010 12:22 AM (GMT -7)
Lisa

It is all about meticulous line & site care...if I'd stuck with what the nurses in the hospital and from the home infusion co. (their brief training session with me one evening) did, I'd have surely had at least 1 line infection (sloppy line access protocols)...but I followed the advice of some folks on a support group for TPN, and that I believe has been what has kept the line/site problems away.

I was on Cipro early 2009 and then in March, I got a plural effusion w/ pneumonia and was put on Ceftazidime instead.  Was on that until the begining of 2010 (plateau reached in late Fall 2009), then was switched to Doxy, but my (small/lg intestines) decided to stop working by May, so was put back on Cipro.  The Cipro stopped working last month (stomach stopped working, Lyme symptoms that had disappeared or decreased significantly slowly started coming back while on the Cipro so I stopped taking it), so was just put on Ceftazidime again this week. 

I chose not to take the risk of running TPN and Rocephin at the same time, despite the FDA's assurances that this combination is only unsafe in newborns...my body has a nack for finding the most obscure side-effect and magnify it, so to me the risk was too great.  Maybe after I'm off the TPN I can try the Rocephin, but don't know when that'll be...was supposed to have been off by now but with my gut acting up twice this year, the TPN weaning schedule has slipped quite a bit.

Take care,

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3whiteroses
Regular Member
Joined : Jun 2009
Posts : 184
Posted 9/17/2010 5:23 PM (GMT -7)
I have a picc in right now. I'm on my third month of having it so far. To date I have only done 30 days of IV Rocephin. I just starting seeing a new LLMD, and he wants me to take oral antibiotics for the next 30 days. Some of my symptoms point towards Bartonella. I had my blood drawn and I'm being tested for Bartonella, and Babesia. After the 30 days of treatment the doc is going to consider giving me another round of Rocephin along with Flagyl.

Having the picc is not as bad as I originally imagined, but I will be glad when I'm well and it is no longer a part of me.
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bablymers
Veteran Member
Joined : Oct 2006
Posts : 1458
Posted 9/19/2010 6:36 PM (GMT -7)
Hi Lisa,

Most of our friends have told us they prefer their "ports".

Best wishes, bablymers mom
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