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» LymeNet Flash » Questions and Discussion » Medical Questions » Horrible port/IVIG nursing problems---it continues no matter what I do!!

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Author Topic: Horrible port/IVIG nursing problems---it continues no matter what I do!!
Rumigirl
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I have been having HORRIBLE port/IVIG nursing problems!! I've posted about it a lot before, and have changed nurses, have complained to the nurses, and to the nursing supervisor several times.

I've spoken and written to my LLMD about it several times. I've left urgent messages to my LLMD about it that have gone unanswered several times!

I'm now trying to change infusion co's and nursing agencies, as the two are always tied together. However, it will be difficult to do ASAP, as the old infusion co just sent me my month's IVIG meds and supplies, which cost a fortune!

But I WILL NOT have the current nurse or nursing agency one more day beyond tomorrow, which is too late to change to a better nurse (I believe). Maybe I should make sure to get a new one for the tx that I'm supposed to get tomorrow, although the other nurses seem to be worse than their "two best nurses!!"

The other guy started out absolutely fabulous---very knowledgeable and experienced. But then he got sloppier and sloppier, and developed a mad, superior attitude to boot, "Who knows best?!" he said, whien I brought up a problem.

The things this nurse and the others have done are not to be believed; it's a list a mile long . And my life is at stake here. Today, among other things, he inserted a new Huber needle, couldn't get a blood return, moved it around (ouch! you're not supposed to do that!), removed it, and, before I knew he was going to do it, he REINSERTED THE SAME NEEDLE!! You're NEVER supposed to do that!

And he still couldn't get a blood return, so he took it out. By then I was gashed up and bleeding a lot. Then he had to insert another one (third stick with a big needle!).

He's a sweet guy, but this is the last of many, many horrible things, and he is "one of our two best nurses," according to the nursing supervisor. I had the other one, and he did terrible stuff, plus developed a terrible attitude,when I said something about flushing me without gloves or hand-washing, after he had been eating with his hands!!

I cannot believe the string of stuff these nurses have all done!!

I guess what I'm asking for is support, even though I am determined, and have taken steps to switch.

I just cannot believe that no one cares about this, not the nurses, the nursing supervisor, the LLMD, the infusion co. They may say they do, but not enough to do anything about it, except to defend themselves. I've so had it with fighting to get decent care. They are all getting paid plenty to do the job right. And their licenses are on the line! Wouldn't you think that would be a motivating factor?!

It shouldn't be this hard. I don't know if the sec'ys aren't giving my LLMD the messages or what?! It's appalling. I've been put at risk of sepsis too many times to count, plus possibly compromising my treatment and compromising my port. It took me a whole year of fighting to find an LLMD to rx the port and IV again. I'm not losing it over sloppy, uncaring nurses!

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lou
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Can you talk to other IV patients in your area and see if anyone has nursing/home health care they like? Or maybe there just isn't much choice where you are.
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Rumigirl
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There's lots of choice where I am. I am trying to switch to an infusion co and nursing agency that is a big national one, Coram, that has a good reputation. And people I know have had them, and they have been good.

IVIG is a nursing specialty, as is port care. However, there have to be good nurses for this. This is beyond appalling. What really gets me, is I get no response from my LLMD's office or anyone else about all this!

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soleil16
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Rumigirl,
I'm sorry you're having to deal with these unprofessional, uncaring nurses and a non-responsive company. I know it feels like a big hassle to try to change companies, but you realize how important this is for your health. to not let anyone handle your port carelessly.

I have had good nurses and bad dealing with my PICC line, and I changed companies immediately when the company did not respond to concerns about my nurse's technique (not wearing gloves, continuing to use products that caused skin irritation and eventually second degree burns around my line). Unfortunately, oftentimes our LLMDs have no influence over the nurse/ company and can do nothing to help in this situation. It would be nice if they would respond or provide some suggestions, but they may not have the resources to make this better for you.

But, as you are choosing a new company, consider interviewing them before deciding. You are right, you are paying them a lot to do their job correctly and should expect someone competent and caring. So ask to speak to a nursing supervisor about their standards: hygiene and hand washing, bedside manner, what happens when you can't get blood return, and how will the company respond/ take action if you have concerns about any of these issues.

I have had nurses who went above and beyond to make me comfortable, even when my demands seemed unreasonable to them. I hope you are able to find the same.

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sammy
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Rumigirl, do you live near a hospital, infusion center, or cancer center? A place like this should have higher standards and set protocols. You should be able to get better care.

It saddens me to hear that your home health providers continue to be so lazy, uncaring, and unprofessional. They don't deserve to be called nurses. They are not acting like nurses should.

If a nurse is assigned to care for you, he or she better make sure that they have the skills, knowledge, and experience to do what is needed. You shouldn't have to ask, it should be expected.

There are good nurses out there who value life long learning and take pride in their work. I hope that you will find someone like this to help you soon.

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Michael_Venice
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Rumi...

what area of the country are you in? PM me if in California.

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Rumigirl
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No, Michael, I'm on the east coast.

Thank you everyone. I raised h*** today. I snapped. I cancelled my nurse's appt for IVIG treatment today. And I made more calls to switch to a big national nursing agency, which has a good reputation. People in my local support group have used them.

I may still have to go through several nurses to fid the right one, but it should be better. I will ask for their best port and IVIG nurse for my area.

I already have the IVIG meds for the next 3 treatments,which cost thousands per day!! And, even though the pharmacy will have to throw them away to send it back (legal requirement), I insisted that they take them back. Otherwise, no nursing agency will deal with it with meds that another pharmacy provided.

I dealt with everyone today: the nurse, the nursing supervisor, the pharmacy, my drs office, the nursing agency that I am switching to. I did not hold back in telling them how upset I was about what has happened, and that I wasn't willing to deal with this agency anymore. Whew, this process is making me very tough. I have to be to preserve my life and health.

I have been appalled though that all the different parties have been so unresponsive to my escalating complaints. Their licenses are on the line! You would think that they would care about that, but no. They responded when I fired everyone but my dr, however!

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Tracy9
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WOW...you are one tough cookie!!! I go to a Cancer Center for my infusion and they don't do half the stuff right but I am too tired to say anything, plus I hate to raise a ruckus. They never take my vitals except when I get there in the morning, they do not clean the end of the line before flushing (which I was taught to do when on home IV), they never wear gloves before flushing that I've noted but I'll look...but overall they are very competent, and I'm right next to an ER, and there is a doctor right there in the building.

Also they are chemo nurses so all they do all day is access ports and do this stuff, so they really are the best. I don't really care if they don't wear gloves when flushing, I never did nor was I told to when doing home IV. They aren't touching anything that goes into me.

But I do think they should be checking my vitals more often. Then again, after all the issues I had and problems to get back IN to the Cancer Center after my past reactions, I'm so afraid they'll find a way out of range blood pressure or heart rate, I'm not bringing that one up. Maybe some things are better left unsaid!

But the thing with the needle....VERY BAD. Total incompetence. He could have put you into sepsis for sure. That was something you could complain to the Nursing Board about. Imagine all the bacteria that could have entered your port by placing a now non sterile needle back in there....scary.

Good luck...we had Coram once and they were fine but our nurse totally sucked so we switched to Professional Home Care, who were AWESOME. But, we had an awesome, outstanding nurse.

--------------------
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13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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Rumigirl
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Oh, Tracy, argh!!! You HAVE to speak up about many of these issues! They flush your line without using an alcohol prep???!!! That could give you sepsis right there! DO NOT allow them to do this! Use the prep yourself, if you have to, or stop them every time. That's really bad.

I insist on either gloves or hand washing before flushing me, because they might touch the end of the line by accident. Don't allow that either. I had to stop my nurses repeatedly over that one. And finally I was flushing myself and drawing up the dextrose myself, because the nurse wouldn't do the right thing.

Please Tracy, you've been through way too much to allow the risk of sepsis, due to sloppy nurses.

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Rumigirl
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sammy, of course you are right. I wish that I had a nurse, such as you would be!

I do now go to a local cancer center for my port care on the weeks that I don't get IVIG. Even there, however, I have to fight for the right care. Not quite as bad there, but not what it should be either.

One time, when I was being accessed (putting a new needle in the port), the nurse didn't put on a mask, which is the standard protocol for sterility. And she was talking right over my port!! I should have spoken up, but didn't.

Last time, the nurse wasn't that experienced with ports, and botched the first attempt---it wasn't in the right place, and there was no blood return. Thankfully, she called the nursing supervisor in to do the next attempt, and she got it right.

[ 01-15-2011, 01:50 PM: Message edited by: Rumigirl ]

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Rumigirl
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Today I feel like I've been through the war, because I have. I had to do these extreme measures with no support from any of the people that I pay a lot to to help me.

One of the times that I spoke to the nursing supervisor of the nursing agency in the past over the bad mistakes the nurse had made, she said, "I don't know why so many things are happening to you! I never had so many things happen to anyone before," as if somehow it were me.

I happen to know from all the patients I am in contact with that this sort of thing happens A LOT! But most people either don't know what should or should't happen (not as true with us Lymies, who are more educated about this stuff), or they don't pay attention, or mostly: THEY DON'T SPEAK UP! But our lives are on the line here!

One of my Lyme/IVIG friends has gone through tons of nurses, and has had tons of horror stories. He's never once complained. But when it happens, he just asks via email for a new nurse, and says it's due to scheduling issues, so he doesn't have to deal with the drama with the nursing agency.

The nursing agency I was dealing with didn't have that many nurses, and I'd already had their "two best nurses," and several of their other nurses, so that wasn't an option.

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Rumigirl
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Well, I thought that the infusion company had agreed to take the meds back, even though they can't dispense them to anyone else. And I was in the process of switching infusion companies and nursing agencies.

Now I found out that the infusion co already billed my insurance company for the treatment days that I refused, due to the escalating nursing horrors. And they are refusing to take the meds back or not bill my insurance company. Which means that I can't proceed with another company. They charge over $11,000 PER DAY for the tx and meds! And they are blaming me for all the problems AGAIN!!

I had two really upsetting conversations with the Billing Dept. of the infusion company today. Although the supervisor said that she would look into it. The BILLING person tried to tell me I was wrong about the IVIG protocol, and she is a billing person and is totally wrong.

I am at an impasse now with no one willing to help (unless I hire a lawyer??). Not that I have the $$ for that, but I'm tempted, as I've utterly had it with dealing with them.

My LLMD hasn't done anything for me in this mess, other than write orders for the new infusion company---didn't even answer my emergency call. NOW WHAT?? In the meantime, my treatment is suspended, and I am slipping in my symptoms again.

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lou
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Any chance of threatening to report the nursing deficiencies to the state medical board? Might this produce a more accommodating attitude? Discuss this with the head person at the infusion co. or write 'em a letter?

Not sure what the LLMD could do about this anyway.

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seibertneurolyme
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The easiest thing to do would be to let the old infusion company use up the existing meds and then switch.

Since they are probably already mad at you then I would probably ask that the nursing supervisor be present when the infusions are done.

Boy am I glad that I do hubby's IV's myself and have never had to deal with home health care.

Bea Seibert

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springshowers
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Get someone else or even do it yourself! My goodness. This happened to me with a home health nurse and I got sepsis because of her sloppyiness and I did speak up too and I got the same sort of responses.
And they were putting on all sorts of non sterile bandages and tape and things over my port as well as what you said sticking me multiple times with the same needle. Even had someone opening up my line at the point it screwed in to unclog a clotted area and they with their hand pulled out the clotted blood and just screwed it back on. I thew a fit and made them take the whole line off and give me a new one.

My goodness. You have to watch these people..
Its ridiculous

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Rumigirl
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Wowee, isn't this stunning how often this life-threatening stuff happens with the nurses?!?

I don't think I could do the infusion myself (although I sure would like to!). I think it's illegal in my state. Plus, I don't yet know how to set up the IVIG infusion (I will soon, as I will watch carefully, so I know how).

I don't think that the nursing supervisor actually does this work herself; she isn't even in the same part of the state. I also don't think that she works with IVIG or ports, she just "supervises" I think (some "supervision!").

To let them finish the meds means subjecting myself to their terrible nurses some more, when I've already had their "best" and some others, too, who have ALL done unsafe things.

But, lou, that's a good idea: saying that I will report the nursing deficiencies to the state medical board, if they don't come around. I'm so sick of dealing with it all, I want someone else to deal with it!! Ha! I'm not that rich to hire someone else to deal with them for me. Plus, with ANY nurse, I have to watch like a hawk, and speak up IMMEDIATELY. Sigh. I WISH I could just do it myself.

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Rumigirl
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Bea, I presume that your hubby has a port---does he? If so, do you access it yourself---put the new needle in? My husband could do a better job than some of these nurses, but my LLMD wouldn't go for that. Plus, when something goes wrong, as it has several times, you need someone knowlegeable about how to handle it. I knew more than the nurse did when it happened each time, though. Erggg!
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seibertneurolyme
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Rumigirl,

No -- hubby has had a PICC line for over 7 years continuously now (replaced as needed). Unfortunately from the beginning of IV treatment (which only lasted 2 months initially) the only med that seemed to work for his seizure-like episodes was IV Ativan. And he required multiple doses daily.

He has been on oral Ativan for the last 3 years actually but needed the PICC line for daily IV Phenergan -- for whatever reason a very low dose would stop his nightly seizure-like spells. And then the last 6 months he has been on IV antibiotics.

For at least 2 or 3 years he was also doing daily IV glutathione. Has also done IV vitamin C, IV magnesium and even IV colloidal silver. And we did do 3 six week courses of IV Primaxin over the years as well.

Unfortunately I don't see the end of his PICC line anytime soon. If the docs will write the scrips then he will be going on IV meds for babs next.

Hubby's neuro wanted to have the nurse in the PCP's office change the bandage weekly even though he was not actually writing the IV scrips. We did that for a month or so, but then his PCP said I could just go back to changing the bandage myself and he didn't need to see the nurse weekly. So that is what we have been doing and the PCP has continued writing the IV scrips. The neuro is no longer involved so that is one less hassle to deal with.

Bea Seibert

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Tracy9
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I didn't even know they were supposed to wear a mask when accessing your port. I kind of think my nurse did but not so sure. I'll have to watch next time.

I'm sure you are right, most people have no clue about all the things they are supposed to do! All the times I have been inpatient, in ERs, no one cleans the end of your line before they attach anything. I did it religiously when we all had PICCs because that is what I was taught. But I rarely saw anyone else do it.

Once when I had to go to see the Interventional Radiologist for a problem with my PICC, he ripped the bandage off then left me sitting in a wheelchair in a hallway, with my open PICC completely exposed, for at least 15 minutes while people walked past and around me!!!

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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Tracy9
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I didn't even know they were supposed to wear a mask when accessing your port. I kind of think my nurse did but not so sure. I'll have to watch next time.

I'm sure you are right, most people have no clue about all the things they are supposed to do! All the times I have been inpatient, in ERs, no one cleans the end of your line before they attach anything. I did it religiously when we all had PICCs because that is what I was taught. But I rarely saw anyone else do it.

Once when I had to go to see the Interventional Radiologist for a problem with my PICC, he ripped the bandage off then left me sitting in a wheelchair in a hallway, with my open PICC completely exposed, for at least 15 minutes while people walked past and around me!!!

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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Rumigirl
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Oh, Tracy, Lord have mercy!

Yes, they are ALWAYS supposed to wear a mask when they change the dressing on a PICC or port, and wear sterile gloves (without touching anything non-sterile). Any bacteria that comes into contact with a central line goes straight to your aorta, thank you very much!

You must NEVER let anyone use your line without using an alcohol prep on it first--scrubbing well. Stop them, or do it yourself, if you have to. That is essential to avoid sepsis.

And the Interventional Radiologist leaving you exposed like that in the hallway with people walking around?!?! Beyond belief. Except that by now, I would believe anything.

We cannot allow the drs and nurses to do these things that put us at such risk. We have to pay attention to everything they do, know what should happen, stop them, speak up, do it ourselves, etc. every time.

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Rumigirl
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I still don't know how I am going to resolve my situation with the infusion co/nursing agency. The only thing that made some sense was what lou said, to threaten to report the agency to the state medical board.

But they already responded horribly when I mentioned a law suit, when she backed me into a corner. The billing supervisor then said, "How do you expect anyone to want to help you, when you are threatening a law suit?"

I made it clear that I don't want to file a law suit, I simply want to move on to another co without paying for meds and treatment further with that agency. But so far, they are not willing to let me off the hook. And I can't go through using nurses that are putting me at risk like this. I'm at an mpasse.

And because they have already billed my insurance co for the days' meds and treatment that I refused, Oxford said I can't stop the payment on that claim. The only way I can rectify it is to file a fraudulent claim report after they get paid! Great!

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sammy
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All these stories are horrifying!

Rumigirl, since the infusion company has already billed your insurance company they will likely soon bill you for your copayment. If that is the case then you might consider taking the medicine that you are/have paid for.

Request the best nurse out of the bad bunch to finish up the infusions. Then have a friend or family member come and sit with you while the nurse is there. Have that person watch what the nurse is doing at all times. Let them be your cleanliness and safety police officer. They can remind the nurse to wash her hands, wear mask and gloves, use sterile technique with dressing changes, scrub the endcap with alcohol before flushes and infusions, etc.

It's not an ideal situation but it is something to consider. I would hate for you to have to miss several infusions while you wait to transfer to another nursing agency.

Rumigirl, you are smart to learn what is right and to speak up for yourself. It's natural for me to do this for my family or friends but when it comes time for me to speak up to defend myself it is very hard to do.

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