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» LymeNet Flash » Questions and Discussion » Medical Questions » Figured it out... RE: Mediport

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Author Topic: Figured it out... RE: Mediport
AP
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To fellow mediport patients... I just got back from the ER because my port of 5.5 months wouldn't flush or aspirate.

Things weren't great at the ER. Since it was so late at night/early in the morning, interventional radiology was not staffed and all they could do was try to access it and flush.

Accessing goes fine, but that's where our luck stops.

The doctor (I know ER docs hardly ever know what they're talking about) mentioned that when I go back in to Interventional Radiology tomorrow, they will most likely remove my port and insert a new one...

Not good! Some of you may remember the issues I had with the first surgery, and anesthesia never kicking in... I'm a big baby when it comes to discussing cutting me open again.

Does anyone have any tricks that I may suggest to the Radiology team tommorow??? I've tried the method we used when I clotted while my nurse was drawing blood, but it did not work. (involving Heparin solution)

Input from those with experience with ports would be great. I have to call my LLMD tomorrow to get a Radiology appointment scheduled, but I posted here to attempt to calm my nerves...

[ 30. August 2007, 02:21 PM: Message edited by: AP ]

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Sometimes when I say Oh, Im fine I want someone to look me in the eyes & say tell the truth

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AP
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I should probably add that I infused as I always do on Tuesday morning 8/29.

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Sometimes when I say Oh, Im fine I want someone to look me in the eyes & say tell the truth

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SuZ-Q
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Ny daughter had a similar problem. The home health team was only trying to flush with saline.
We went to the ER and they flushed first with heparin and the problem was solved.

Was your port being flushed with saline or heparin?

Good Luck! Hope you don't have to have it removed.

Suzy

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monkeyshines
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AP, not sure if you've gone already...when I hadn't had mine flushed in a long time and it would barely budge, the nurse ordered some stuff that they inject into people who are having a stroke. She was going to put it into my line and let it sit for a while, and then try flushing it again.

Turns out, when I went back to do it my port worked fine so she didn't have to use it.

I wish I could remember the name of the drug, sorry!

Hope you open up okay.

monkeyshines

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AP
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My port is flushed with both Saline and Heparin after each infusion. Like I had said, I infused yesterday morning, but when I went to infuse last night, nothing would move through my line.

The ER couldn't get it to budge...

I need actual names of remedies that have worked... I've read about Cathflow and TPA and hope that the Interventional Radiology team decides to try something like that before saying the port should come out.

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Sometimes when I say Oh, Im fine I want someone to look me in the eyes & say tell the truth

Myspace: http://tinyurl.com/5p64ed

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AP
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OK... A checkup has been scheduled for tomorrow (Thursday) AM with radiology. I am a little perplexed b/c we are talking about a supposed clot and when my PICCs would get clotted no one ever hesitated to remove them.

Anyone understand why there isn't much urgency with a clot in a port?

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Sometimes when I say Oh, Im fine I want someone to look me in the eyes & say tell the truth

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achey
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You probably already saw your radiologist, and I hope things went ok.

Hopefully they were able to TPA your line and get it clear. If not, then they may have done a dye study to see what was wrong.

I'm on my second port! The first one was a subclavian entrance one. It was a lot of trouble to me because I am thin, and the cathater would get pinched under my clavicle.

ALSO... most important is that I was advised it was ok to do blood draws offf my port! IT"S NOT! I developed a fibrin sheath at the end of my cathater that would flip back and forth over the end of the line and eventually closed off the end of the port.

My new port is a jugular entrance, and I have NEVER drawn blood off of it and have had no problems with it at all!

Recovery from the second installation was much easier too... I only had local ansthesia for the second surgery... (remove bad port and put in new) and some meds to be calm like valium... can't remember extact med.

Additionally the second hospital sent me home with a wonderful sweat-free ice pack and said to place the ice on alternate sites every 20 minutes for 2 days. The ice paking helped trememdously!

I hope you are doing better, and I hope my story helps!

Wishing you well! [Big Grin]

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AP
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By the time I heard from my LLMD yesterday, I'd already gotten an appointment with the Interventional Radiology team. I was, however prescribed Lovenox, which I injected myself with last night (into the stomach, ouch!).

When I finally got on to the table at the hospital, the clot was gone... Whew!!! I feel like I really dodged a bullet there.

Anyways, I am extremely disheartened by the treatment at the hospital - primarily the IV tech's attitude. She was amazed because my port is not flush with my skin - it never has been, and won't ever be. It's seriously angled and the only way to access it is to push up on the top and bring the port flush with my skin. It's really not a big deal.

The idiot wouldn't listen to me while I gave her instructions because, even though it's my body and I access myself at least once a week (sometimes more if I choose to deaccess for whatever reason), she knew more than me because she was an IV tech.

I have a new rule. Just like when I went through my many PICC lines - where they got 3 tries and then it was over. If anyone insists that I not access my own port, but they miss - I get to inflict pain equal to that of what I feel when saline is injected subcutaneously...

I think the worst part of it all was that I told her the first time that it wasn't in the actual port and she had the nerve to argue with me. The radiologist overheard our debate (I would not let her try to flush the line) and came in and confirmed that she had completely missed. Then, the second time, I told her she missed, and she injected the saline anyway - bringing me to tears... The third time, I screamed and another nurse came in - one that listened. She got it first try (maybe because she actually pushed down on the top of the port). This whole time she (the IV tech) kept reusing the needle, which I have been told not to do for fear of contamination. If I wasn't physically stuck on that table, I would have left.

I am so angry right now. I understand that I am a patient and they are "trained" "professionals", but I have certain rights - like I have the right not to be treated like a pincushion. I've included a photo of the resulting damage... The only marks on my chest should be the straight, long scar from the insertion and maybe evidence of a single poke (that normally disappears pretty quickly with me).

 -

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Sometimes when I say Oh, Im fine I want someone to look me in the eyes & say tell the truth

Myspace: http://tinyurl.com/5p64ed

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AP
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quote:
Originally posted by achey:
You probably already saw your radiologist, and I hope things went ok.

Hopefully they were able to TPA your line and get it clear. If not, then they may have done a dye study to see what was wrong.

I'm on my second port! The first one was a subclavian entrance one. It was a lot of trouble to me because I am thin, and the cathater would get pinched under my clavicle.

ALSO... most important is that I was advised it was ok to do blood draws offf my port! IT"S NOT! I developed a fibrin sheath at the end of my cathater that would flip back and forth over the end of the line and eventually closed off the end of the port.

My new port is a jugular entrance, and I have NEVER drawn blood off of it and have had no problems with it at all!

Recovery from the second installation was much easier too... I only had local ansthesia for the second surgery... (remove bad port and put in new) and some meds to be calm like valium... can't remember extact med.

Additionally the second hospital sent me home with a wonderful sweat-free ice pack and said to place the ice on alternate sites every 20 minutes for 2 days. The ice paking helped trememdously!

I hope you are doing better, and I hope my story helps!

Wishing you well! [Big Grin]

Yeah, I fired my home health agency (I'm getting ready to start up with Apria and am looking for comments) about 6 weeks ago, and just before that we'd decided that blood wouldn't be drawn from my port.

Thankfully, my angio appointment got cancelled, and I didn't need TPA after Lovenox. I'm so relieved that it worked that quickly. [Smile]

Thanks for sharing your story with me.

--------------------
Sometimes when I say Oh, Im fine I want someone to look me in the eyes & say tell the truth

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trueblue
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Hey AP, good to see you, sorry it was under not the best conditions.

I'm glad the port is alright and you should get to use that tech as a pin cushion. Tell them I said so.


I give people one try at sticking me (for whatever reason) and then they are done. I can tell from a regular blood draw who knows how to do it and who doesn't. There's a guy at the local lab that is not allowed to touch me and he knows it and everyone that works for the company does, as well. I think I should get to jab a needle to it's hilt nowhere near a vein in his arm.

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more light, more love
more truth and more innovation

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AP
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quote:
Originally posted by trueblue:
Hey AP, good to see you, sorry it was under not the best conditions.

I'm glad the port is alright and you should get to use that tech as a pin cushion. Tell them I said so.


I give people one try at sticking me (for whatever reason) and then they are done. I can tell from a regular blood draw who knows how to do it and who doesn't. There's a guy at the local lab that is not allowed to touch me and he knows it and everyone that works for the company does, as well. I think I should get to jab a needle to it's hilt nowhere near a vein in his arm.

I think that in order to work on people with mediports or PICC lines, you should have to have one yourself. I have met too many incompetent SOBs in the last few years.

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Sometimes when I say Oh, Im fine I want someone to look me in the eyes & say tell the truth

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trueblue
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*nods*

The last time I was getting a picc the nurse tried to insert it with the guide wire in it. Moron!

Needless to say she tore the line. I told her AND the supervisor with her that she was doing it wrong. I know how a picc line is inserted; I've watched enough times.

Then they butterflied IV pushes of Rocephin into the back of my hand for 2 days. Umm... That was when I fired their sorry asses and reported them to Medicare and anyone else I could think of.

(They were supposed to be, primarily, Hospice nurses. I was frightenend of what they might be doing to the rest of their clients. [Frown] )


I wound up having a friend that worked in the Cancer center ask one of her docs to insert a line for me.


That was 5 years ago. I'd go back on IV in a heartbeat. That and IM seem to be the only things that work for me.

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more light, more love
more truth and more innovation

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AP
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quote:
Originally posted by trueblue:
*nods*

The last time I was getting a picc the nurse tried to insert it with the guide wire in it. Moron!

Needless to say she tore the line. I told her AND the supervisor with her that she was doing it wrong. I know how a picc line is inserted; I've watched enough times.

Then they butterflied IV pushes of Rocephin into the back of my hand for 2 days. Umm... That was when I fired their sorry asses and reported them to Medicare and anyone else I could think of.

(They were supposed to be, primarily, Hospice nurses. I was frightenend of what they might be doing to the rest of their clients. [Frown] )


I wound up having a friend that worked in the Cancer center ask one of her docs to insert a line for me.


That was 5 years ago. I'd go back on IV in a heartbeat. That and IM seem to be the only things that work for me.

I am really happy on IV. I can sometimes be down to only 12 infusions a month. Oral antibiotics never worked.

Every time I went in to get a PICC line, I'd walk out looking like I was in a horrific car accident. The last PICC I let them insert took something like 2 hours to get in. My veins do not like foreign invaders - they reject peripheral IVs pretty quickly.

Of course, Drs and nurses don't believe that I'm that hard to start a line on (who am I to tell them [bonk] , I just have to live through the torture every time they come near), so they abuse me for a good while before they start listening.

I have been ordered by my LLMDs office to return to the ER tonight (Lovenox is doing some weird things to me - that no one has ever heard of before), and as you can see I am procrastinating big time. My boyfriend bought my a stun gun and pepper spray I've thought about adequately equipping myself with. [Smile] Unfortunately my Lyme brain can't remember where I left either. [Roll Eyes]

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Sometimes when I say Oh, Im fine I want someone to look me in the eyes & say tell the truth

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minoucat
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The hubby has had a lot of problems with his port (couldn't draw blood from it; increasing pain) and ended up with a huge clot around the port. Had to have the port out.

The new IV nurse succeeded where all others had failed: she got a PICC line in easily and with no bruising. She used nitroglycerine paste on the insertion end of the PICC line (to dilate the blood vessel) and Ativan (to keep him very very happy and prevent the blood vessel from spasaming).

If we'd had this nurse in the first place he'd never have had to have the port put in.

If we had it to do over, other than getting the right PICC nurse, we'd have gone for a double-headed groshong rather than the mediport. A Mediport may be fine for cancer patients who don't infuse so often, but it was a lousy tool for a Lyme patient infusing 4 times a week.

Best of luck.

--------------------
*********************

RECIDITE, PLEBES! Gero rem imperialem!
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AP
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quote:
Originally posted by minoucat:
The hubby has had a lot of problems with his port (couldn't draw blood from it; increasing pain) and ended up with a huge clot around the port. Had to have the port out.

The new IV nurse succeeded where all others had failed: she got a PICC line in easily and with no bruising. She used nitroglycerine paste on the insertion end of the PICC line (to dilate the blood vessel) and Ativan (to keep him very very happy and prevent the blood vessel from spasaming).

If we'd had this nurse in the first place he'd never have had to have the port put in.

If we had it to do over, other than getting the right PICC nurse, we'd have gone for a double-headed groshong rather than the mediport. A Mediport may be fine for cancer patients who don't infuse so often, but it was a lousy tool for a Lyme patient infusing 4 times a week.

Best of luck.

I just stay accessed while I am infusing during the week. As a 25 year old female, having something as obvious as a PICC or any of the other devices is quite depressing. I like being able to pretend all is fine and dandy every once in awhile.

--------------------
Sometimes when I say Oh, Im fine I want someone to look me in the eyes & say tell the truth

Myspace: http://tinyurl.com/5p64ed

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