Topic: Help! Port dressing compromised. Nurse won't change it for 3 days.
Rumigirl
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My port dressing is not sealed on the bottom, and my nurse won't come out to change it for 3 days! He says, "Tape it down, you'll be fine. Don't worry." I'm trying to figure out what to do.
I had a port implanted October 11th. The huber needles that the pharmacy has been sending is the kind that sticks up really high from my chest---about an inch. This makes the dressing not stick on me for a large area, as it's up so high.
I just found out that there is a kind that is fairly flat, a butterfly huber needle, which I now asked for. I will receive that kind on Wednesday. My dressing change/re-accessing the port was scheduled for Thursday originally.
When the nurse was here on Saturday, I said that the dressing had come up on the bottom, where the tubing comes out. He said that it was fine. Maybe it was, but it wasn't clear to me that it wasn't compromised. He just thinks I'm a worry wart.
Now it has come up further on the bottom, and when I looked with a magnifying mirror and my reading glasses, I can clearly see that it isn't sealed on the bottom; it is open on the bottom. This means that it isn't sterile! And I'm accessed, which means there is a needle in my chest with a line to my heart! To me, that means it has to be taken care of ASAP. Although the right needles won't come until Wed. And he doesn't have time to come on Wednesday.
The infusion nurse was fabulous originally, but has been getting too lax lately.
I think either I need to deaccess myself until he comes on Thursday and miss two more days of abx infusion (I've already missed 3 days, and other days before, due to multiple pharmacy errors!), or get another nurse to take care of it sooner. Or tape it and hope for the best (not so good!). I also hate to miss more days of treatment.
I don't want to antagonize this nurse, as he knows a lot and was great originally. If I get another nurse sooner, it will surely aggravate him. But it's my life and health. I think that there are not a lot of really good port care home nurses around.
I might be ok just taping it, but it is taking a chance I shouldn't be taking, I believe. Help! I have been having to fight so hard to get everybody to do the right thing, everyone has been screwing up a lot (infusion pharmacy, LLMD, infusion nurse), and they get REALLY mad at me and blame me when I ask them to do what is necessary! I've had it!
On top of it all, the area under and around the dressing (hypoallergenic IV 3000) is all rashy, blistering, itchy and hurts from allergic reaction to the dressing. Errgh! But that part isn't life-threatening. There's also junk under the dressing, dark black/brown specks (adhesive?). There wasn't anything there when he changed the dressing.
Sorry for the long post!
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sammy
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Oh Rumigirl, I'm so sorry you are having to deal with this now. It sounds like you know the right thing to do. If the dressing is not sticking and if it is dirty it needs to be changed ASAP.
Did you hire your nurse private pay or are you using a home health agency? If you have a home health agency they should be able to have another nurse come out and take care of the dressing and re-access the port.
I know that you don't want to offend your current nurse but you have reason to be concerned. It is your safety and health that is at risk. You don't want any complications. You are already dealing with enough.
If you can't get another nurse to come to you, can you go see the surgeon who put the port in? Maybe the nurses in his office can take care of it for you?
I'm so sorry Rumigirl. I completely feel your frustration.
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It sounds like you are really worried. So go with your gut feeling. Your right it is your life and if you don't fight for it who will? My husband is still suffering from Lyme and had a picc line during the summer. Since he suffered from complete memory loss I have had to be his advocate. Believe me, during this whole process I have been quite fiesty with the doctors, nurses and such when I felt that something wasn't right. There is no hurt in calling the infusion company and letting them know your concerns. If that doesn't work go to your doctor to check it out. Best of luck.
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Rumigirl
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I have a home health agency that I have the nurse through. The weird thing is, he may be right that I may be ok. But to take that chance?? That's crazy!
He just thinks I'm worrying about nothing. But when I looked carefully, it clearly wasn't sealed on the bottom. Just taping it, just seals something that isn't sterile anymore--crazy!
I think I should deaccess (haven't done that yet;it's harder to pull the needle out than I thought!) and wait until I get the better needles in and can have it reaccessed. Sigh.
It's unbelievable how many things can and do go wrong! But to have the pharmacy and the nurse mad at me for asking for what is necessary---terrible!
When the nurse comes to do the IVIG tx, the LLMD rx'd it to be a 6 hour infusion. That is because I ended up in the ER in the beginning, due to what looked and felt like aseptic meningitis (a side-effect of IVIG).
The nurse has been shortening the infusion more and more---last time was 4 hours and 20-40 minutes. And I ended up with a horrific migraine that night. And I've been saying to him that it has to be over 6 hours!
As I said, I'm tired of fighting so hard for what is necessary. I shouldn't have to, but I do. I'm sure that you can relate, sammy. Thank you for your concern.
Posts: 3771 | From around | Registered: Mar 2008
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To heck with offending the nurse. You have too much at stake to have your care compromised in any way.
At the end of the day, it doesn't matter whether the nurse is right or not about not needing a dressing change. If YOU want a dressing change, then they need to change it.
I had plenty of problems with my home health agency and my port care. Like you, I got so tired of having to defend myself and insist on things being done as Rx'd by my doctors and done the right way.
If I were you, I'd call and speak to your nurse's supervisor. Make your concerns known to the supervisor and demand a change -- a new dressing ASAP, a better Huber needle kit, and, most importantly .....
demand that the nurse FOLLOW your doctor's instructions with the IVIG infusion and not to rush it or shorten the infusing time.
This is your health and your body. You are in the driver's seat.
If speaking to the supervisor yourself does not bring about results, then I would call your LLMD's office and ask them to speak to the supervisor to find out why they aren't following the doc's instructions and why they aren't following standard, safe Port care with you.
I ended up firing my first nurse because my care kept getting compromised.
It's terrible to have to work so hard to get basic, safe, acceptable care ... especially while feeling so ill and incapacitated.
And just FYI, the FDA recently expanded its Huber Needle recall. Don't know if this will affect the types of supplies you use or not. Here is the info:
By Cole Petrochko , Staff Writer, MedPage Today Published: October 13, 2010
WASHINGTON -- The FDA has expanded a class I recall -- its most serious -- of Huber needles to include all products containing the intravenous device.
An earlier recall notice nixed needles that could produce cores -- silicon fragments -- when installed and could cause the sliver to dislodge and to possibly cause infection, tissue damage, and death, as well as other potentially fatal adverse reactions.
According to an FDA statement, the new recall includes all Huber needles and products manufactured by Multi-Med -- such as administration sets -- that contain the intravenous device and were distributed from July 12, 2005 to May 28, 2010.
The products were sold under the brand names All-Med Medical Products and Marquette Medical -- but sometimes sold in bulk without labeling, the agency said.
Huber needles are inserted into vascular access ports implanted under the skin to deliver intravenous therapies to patients.
Healthcare professionals and other device users should discontinue use of the Huber needles and find a replacement product, preferably those which penetrate the port septum without cutting or dislodging any silicone cores (or slivers) from the ports, the FDA explained.
If a noncoring alternative is unavailable, the FDA recommended that healthcare professionals allow a small amount of blood to enter the access port and discard the syringe if the silicon septum is punctured; this will potentially catch the silicon core.
Healthcare professionals should not flush the syringe, since this may cause the silicon core to enter the patient's body, the agency cautioned.
An FDA class I recall involves products that may cause serious adverse events or death with use.
Multi-Med is headquartered in Keene, N.H.
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sammy
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Thinking more. Has the dressing come loose completely from the bottom up to where the needle is accessed? Or has it only pulled up a little bit but still adhering well for the most part around the needle?
For future dressing changes get some "Remove" adhesive remover and "No Sting Skin Prep" by Smith and Nephew. (I got them online from Allegro Medical).
Use the "Remove" to loosen the old dressing. After you've cleaned the site and accessed as usual then apply 2 layers of Skin Prep. Let dry really well between chloraprep and each application of Skin Prep. Then put dressing on top. These two products have helped heal my skin when it was getting really irritated from frequent dressing changes.
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Rumigirl
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Wow, thank you both!
Sammy, the dressing is adhering ok at the top and sides, but the bottom came undone/up a lot, so that there is an open pathway up the tubing to the huber needle. Not so that the needle is exposed, but it is clearly open from the bottom with no adherence in the center area around the tubing to the bottom.
I did tape it down while I am figuring out what to do. But to just tape down something that can't be sterile anymore?? It doesn't make sense. It's just gambling. Isn't this right? I can't see how I could be wrong about this.
Frankly, I'm shocked that the nurse is being so cavalier! And just treating me like I'm a nervous nelly. He hasn't seen it the way it is now. And he didn't look that closely on Saturday. Maybe it was ok then, not sure, but now it isn't.
Thank you, Fuzzy, for the feedback on how hard you had to work to get the nurses to do the port care right. And thank you for the recall info---yikes! I don't have that brand, but it's good to know what to watch out for.
And thank you, Sammy, for the info on the Remove and Skin Prep. Actually, I think I used the Skin Prep when I had a PICC last year; I may have some around. I forgot about it.
I can't even use Cloraprep (react to it I think---hard to know whether it's that or all dressings); we're using povidone iodine, and then alcohol swabs to get that off.
So I'll deaccess tonight, get the new needles on Wednesday, and either get another nurse to change the dressing and reaccess Wednesday or wait until Thursday to reaccess and for a dressing change. It will be another 4-5 days with my treatment interrupted for the second time in less than 2 weeks! Grrrr!
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Rumigirl
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Oh, and to top it off: when I finish infusing the IVIG, it's hard to know exactly when it will finish. So, when I come back in the room, when it's done, and the nurse has been eating with his hands, or whatever, he flushes me without washing his hands, using gloves, or using sanitizer!!
Ok, maybe he isn't touching the tip of the extension set with his hands, but basic sanitary precautions tell one to do it otherwise.
Why is it so darned hard to get a nurse to do the right thing?!! The stakes are pretty high here.
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Any nurse that approaches you without washing, sanitizing and putting gloves on is a nurse you can do without and need to do without. He clearly is not following protocol and in so doing could cause you more harm than good.
It is in your best interest to call whatever agency is providing this nurse and request another one. Specify that whoever is assigned to you needs to follow standard protocol and needs to address and respond to any concerns you have about your site or dressing. Likely they will be horrified to hear that one of their nurses has been so nonchalant.
In the meantime, phone whoever placed your line and ask when (not if) you could come in to have it checked because you are concerned about x,y,z.
My daughter had a picc. Anytime I had a question or concern, the dept at the hospital that placed it and the nurse from the agency were all over it. There is NO reason for you to put up with worrying and wondering.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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Hi, Sorry you are having such a tough time.
Sounds like the huber needle is too long, especially if your port is easily papable on your chest. Don't be confused by the term "butterfly". Butterfly is usually a huber needle that when deaccessed is not a safety needle. (can't retract the needle, risk of needle stick).
Huber needles usually come in lengths like one inch, 3/4 inch, 1/2 inch. Ideally the hub part of the needle should be close to flush to the skin.
Also different gauges, meaning diameter of needle. A 20 gauge is bigger then a 22 gauge (a little wider) If you have IVIG you may want a 20 gauge.
So the package should read Huber 20g 3/4 inch for example.
so when requesting a needle you may tell them I want to try a 3/4 inch or 1/2 inch, they should't stick up as much. You may have to try both you don't want the needle too short either.
Also the usual procedure for dsg change when using betadine and alcohol is to apply the alcohol (usually 3 swabs), first starting from the center and circling out. Let it dry and then apply the betadine starting at the center. (usually 3 swabs) and let it dry. You don't wipe it off!
If defeats the purpose to wipe it off, removing the bateriocidal effects. I know if doesn't look nice! Alcohol kind of degreases the skin.
Your skin may be irritated because of the wiping off of betadine causing friction.
As far as the dressing, sometimes if it does come up a bit, you can tape it, as long as the insertion site is not exposed.
But in your case it is a new port and you are concerned, if I were the nurse I would of come out and changed at least the dsg and most likely would have deaccessed and reaccessed the port.
I am also concerned because if you have never deaccessed a port before, the nurse should have come out and watch you do it for the first time. Safety always first!
posted
Oh my goodness. Get yourself a new Port nurse, Rumi. after my last experience with my initial Port nurse, now an IV nurse has ONE chance with me to perform. If they slip up on any part of the sterile technique procedure, they're fired.
When I finally told my Lyme doc of all the trouble I was having with my Port nurse -- gave him the details, that is -- he was furious. He said to me, "You have to promise that you won't wait so long to speak up again. You need a new nurse."
So, I'm kind of sensitive to what you're going through, I think.
Please don't let anyone intimidate you. You might be sick, exhausted and overwhelmed, but you still know when you're not getting good patient service.
I think your instincts are yelling at you loud and clear. Who cares what the infusion company or nursing agency thinks. You (or your insurance) are the one who is paying for this. And you aren't paying them to make you sicker or place you in any jeopardy.
Speak to the supervisor, your LLMD if necessary, and ask to be given a new IV/Port nurse.
Stay strong!! I'm cheering for ya.
p.s. By the way, did the physician that placed your Port tell you what size needle to use? My Surgeon told me at the outset that for my Port, I would need a 1" Huber needle. It's different for everyone, I think, depending upon type of Port, and where it is placed.
Posts: 503 | From Maryland | Registered: Oct 2007
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Hi, I forgot to mention that with IVIG sometimes premedicating with Motrin and/or some IV fluids greatly decreases headaches associated with the infusion.
As far as the nurse not washing his hands totally unacceptabble, you need to speak with him and the supervisor. Are they not doing vital signs several times during the infusion?
Also guys please remember there are alot of good nurses out there. Grace
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Gace is right! I just want to encourage you, Rumi .... when I fired my first, loser of a Port nurse (who was very much like how your nurse sounds) -- I was given a new nurse.
She was outstanding. One of the very best nurses I have ever encountered. And to make it even sweeter, she was Lyme Literate. Having her assigned to me was like a match made in Heaven. lol
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Rumigirl
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The weird thing is that this nurse was fabulous in the beginning. Extremely knowledgeable, caring, and very careful about dressing changes. He was the best nurse possible in the beginning. It's not like he doesn't know what to do. He got lazy or too comfortable.
And then, with all the time spent here with long IVIG infusions, he started getting sloppier and more lax----not good! And his blowing me off today about needing a dressing change was the last straw! I couldn't believe it.
Well, just an hour ago, I deaccessed for the first time. But I couldn't get the needle out for a long time, because he hadn't really shown me how! He had me try last time, but didn't show me.
So there I was with the dressing off, and I couldn't get the needle out! I was really sweating it, which shouldn't have happened. I was calling someone in CA (it's late on the east coast) to help me figure out what to do. I finally figured it out. I was pulling on the stabilizing part, not the needle itself.
My needles are 3/4", I asked the surgeon when I had it placed. And the ones I have now are 20 gauge. But the gripper needles I have do stick up from my chest an inch, and there are kinds that are flatter, which is what I am getting on Wednesday.
I really thank all of you for your support with this. Next comes the part of dealing with the home health agency/nurse. I'm not looking forward to it, but I definitely am one to speak up. Which is why they get mad at me (no excuse for that, however).
As it is, I've gone through the infusion pharmacy screwing up the meds they deliver royally multiple times, without being willing to admit it. It's interrupted my treatment a lot. And they are blaming me and mad at me about it! I've really had about enough of all these people not doing their job and me having to constantly get on their case. Then they get mad.
Oh, and the brown specks turned out to be specks of blood, as I had bled some after he accessed me last week.
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Rumigirl
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Grace, hmmm, we changed to using povidone, since the chloroprep irritates my skin, I believe. It was my idea to use the alcohol after the povidone dries, so it doesn't look so bad!
We are using the alcohol swabs, not the preps. But it sounds like that still isn't ok, correct? Errgh---it looks so bad! But, of course, safety is way more important. Sigh.
And, yes, he should have supervised a successful deaccess. He tried, but when I couldn't get it out, instead of showing me how, he just did it. I still didn't understand how to do it, until I figured it out under great duress tonight!
Grace, on the premedicating before IVIG: I do do tylenol before and after, and originally did Benadryl, until we ascertained that there was no allergic reaction.
I heard about doing IV saline to help, but my IV nurse said that it's no different than just drinking plenty of fluids. Not sure if that's true. My LLMD had never heard of it either, so didn't rx it. In fact, I think you can't use much saline after the IVIG, only dextrose with the Gammunex, don't know about beforehand.
[ 11-02-2010, 03:23 AM: Message edited by: Rumigirl ]
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It is true that saline and Gammunex are not compatible, but you can give a Dextrose IV for fluids (D5W) sometimes 250cc or 500cc bag. Or you can even give a bag of saline as long as the line is flushed with dextrose inbetween the gammunex and saline bag.
Some patients do better when given the fluids IV. May be because you are being "tanked"up and are getting the fluids over a shorter period of time.
Motrin acts as an antiinflamatory, not just as a pain releiver.
I forgot too, to mention about how fast the IVIG goes in. The order should read something like start infusion at 40cc/hr, then titrate up every 10-20 minutes 40cc if vital stable to a max of 200cc/hr. Or start the IVIG at for example 3mg/kg/minute and titrate up to a max of 50mg/kg/min,if vital signs are stable. Remember these are just examples, not actual dosing.
Rumigirl
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Hi Grace,
Thank you! I have a few questions, since you seem to be an experienced IV nurse.
Was my assessment right that since the port dressing was open at the bottom straight up to the huber needle, the sterility of the site was compromised? And therefore I needed to either have the dressing and needle changed or deaccess? is there anyway that the nurse was right that it would have been ok just to tape it down?
It certainly didn't make sense to me that that would be definitely ok. The needle wasn't exposed, but it had been open up to it.
So the alcohol swabs aren't bacteriocidal enough after (or instead of) the povidone? Maybe I should try the choloroprep again, but with the Skin Prep that sammy mentioned after. Is that ok?
On the Dextrose IV, is it usually given after or before, or both? He flushes me with dextrose after, but just a small amount in a syringe. And how fast is the Dextrose usually infused? That's surely not so critical, as it is with the IVIG.
The LLMD rx'd the 35 grams of IVIG over 6 hours. If you divide the ML IVIG solution by 6 hours, you get 58.33 ML/hour flow rate. But he's clearly been running it faster.
He says, 'the amount of fluid that they send is different each time," as an explanation for why it's done in so much less times. That's complete BS from my looking at it. It's very precisely controlled, and it says how many ML on each bottle.
Thank you for your help!
As I said, it's also distressing, because he started out so wonderful, but got sloppier and sloppier.
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Hi, In my opinion if the dsg was so compromised that the huber needle insertion site was exposed, or close to it, I would deaccess the site, reprep using aseptic technique and reaccess with new huber needle. If some of the end of dsg came up, I would consider telling the patient to tape it till the next change. But if they were uncomfortable with that I would change it.
If you were unsure if you had a problem with the chloraprep I would try what sammy said, use it and then the skin prep. You can research chloraprep on cdc and nih or even nursing websites, if is far superior in helping prevent catheter born infections.
Dextrose is usally given before, 250cc over 20 minutes if no cardiac/pulmonary issues. Or even 500 cc's.
It is a little unusual to rx the IVIG as 35 gm over 6 hours. It's not really divided equally over 6 hours like 58.33ml/hour. You don't start at one rate and keep it there. You infuse at a lower rate and titrate up, to a max as specified by the MD.
The volume never changes on IVIG. Gammunex comes in 5gm/50cc vials, 10 gm in 100cc vials and 20 gm in 200 cc vials I beleive.I see how you figured out 58.33 ml over 6 hours (total 350 ml).
If it is pooled, meaning they transfer from the bottles to one bag, the volume never changes, you cannot add or subtract fluid.Read the manufacturer literature.
also when you first start IVIG you run it slow. As you get to know the patient and what they can tolerate then you can kind of fine tune the tirtration rate.
are you using an IV pump? or by gravity?
And sometimes if it is started slower and titrated up, you may not get a headache.
I don't know the particular policies of the nursing agency you are using, so I can't state that they are wrong or harming you.
It is sad that is has been becoming distressing, and you certainly need to trust the nurse. I know it will be hard but when you speak to the agency, try to stay calm and just tell them can someone review with you the infusion rates, port change policies etc. Tell them your concerns and you may want to write a letter also.
Hope this helps! Grace
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Rumigirl
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Grace,
Yes, it is sad that it has become so distressing, and that the nurse that I trusted so much, now I am not trusting in a number of ways.
I am still confused about the dressing issue, and I'm trying to learn from it.
Is it not so that if the dressing comes up so enough that it is open clear up to the Huber needle, but not exposing the needle, then it isn't sterile anymore?? That's what I would think.
In that case, taping it down just seemed like taping over something that isn't sterile anymore. But maybe it isn't a black and white issue. I am confused about it and would like to know.
On the flow rate of the IVIG, the LLMD originally rx'd it over fewer hours, but because I ended up in the ER with what looked like meningitis, he changed it to be infused over 6 hours. But he never rx'd anything about the flow rate.
For several months I had it done by gravity, but now have an IV pump. With both ways, this nurse, and another nurse I had, set the flow rate at the beginning, and never varied it, except slightly occasionally. With the pump, he definitely sets it and that's it (although I don't know if the flow rate varies). He didn't vary it when I had the gravity bag. So what you are saying is news to me.
I do know, however, that I do better with the slower infusion rate, and got a horrific migraine after the faster rate last Saturday. Granted I get them a lot anyway, but this was way worse than usual. The SE's from the IVIG are definitely lessening, but the slower rate is clearly important for me.
This nurse has very generously offered to help me with the dressing changes/reaccessing without charge when insurance won't cover them, which will happen starting January. (I can only get 50 visits per year covered, and that will be more than used up by the IVIG tx). So it's complicated. And he was way better than the other nurse they sent several times. He's been helpful and knowlegeable in many ways, so it's a mixed bag.
Don't you agree that he should be using gloves when he flushes me and sets me up? He isn't. He doesn't even wash his hands to flush me at the end. He does use sterile gloves when he changes the dressing and reaccess me, of course.
When I had a PICC line, I learned to use gloves when I infused myself. But he said that I don't need to do that now, as long as my hands are clean. Is that right? So many questions and issues.
Thank you sooo much for your help. I very much appreciate it.
[ 11-07-2010, 02:05 PM: Message edited by: Rumigirl ]
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Hi, You are right, the when is ok to just tape the edges as opposed to replacing dsg is not black and white. I think what you want to know if that if any part of the huber needle is exposed should the dsg be changed?
I would say yes, deacccess, clean and then reaccess.
I do not wear gloves with flushing, etc. I think personally with gloves people get sloppy, thinking you can touch all surfaces, and the gloves don't get contaminated. Also when you reach in that box of gloves that has been opened, they may be clean, but not free of bacteria. I also wash my hands a million times, though. I do wear gloves drawing blood, inserting needles etc and sterile gloves for dsg changes.
Plus some peaople a pair more then once, a no no, or touch multiple surfaces with them.
I have never infused IVIG without starting at a lower rate then progressing upward. That is defined by MD order. I have never run it at the same rate for hours nor have I seen ordered that way.
I think most likely if it is started slow and titrated up adverse reactions may not happen or will be milder and you may be able to infuse in less time. Just my experience. Also to premedicate with Tylenol as you have, or Motrin and fluids.
the nurse is generous to help you, will he be helping as part of the agency or as a single practioner?
How many times do you get IVIG and antibiotcs? and for what I can see you are infusing at home? Grace
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Rumigirl
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Grace,
Well the saga goes on. I called the nursing agency to ask some questions on Wednesday; the nursing supervisor was gone for the day, however.
My nurse came on Thursday to reaccess me and change the dressing. He was mad from the moment he came (he came 40 minutes early in the early am, and he thought he had told me that time, which he hadn't).
I had to run down the litany of things that he needed to do correctly. As I expected, he was thoroughly ****ed, although he was in the wrong, not me. I just calmly and as nicely as possible went through everything and didn't back down.
When I asked him to either wash his hands or wear gloves before he flushes me at the end of the IVIG infusion, he very curtly said, "If you prefer." I said, it's not just what I prefer, it's protocol, and basic sanitary procedure! He kept saying curtly, "If you prefer."
He also said, "Who knows better, you or me?" And I said "You do," because he has the experience. But to expect me to go along with all this stuff because "he knows better," whew---NOT.
I would have fired him long ago, except that the first nurse they sent was way worse, he was fabulous in the beginning, and most of all, because I'm stuck about reaccessing/dressing changes for next year (not enough nursing visits covered for that), and he offered to help.
What he offered was to do the reaccessing/drsg change when he's here for IVIG every other week, and on the off weeks for me to go to him to do it for free. Very generous. This was not officially, of course, since my insurance company will only cover 60 nursing visits per year, which will cover only the IVIG infusions next year, plus 8 more visits.
But I am now doubtful that the relationship is going to work at all. We'll see.
[I just had a brain storm: if the LLMD rx'd the IVIG once a week, instead of 2 days every other week, and the dressing change/reaccessing were part of the visit, then I would be covered!! I hope that will work.]
On the flow rate for IVIG, the LLMD has never indicated what it should be. I forgot to ask him about it when I had a visit on Thursday. I'll have to email him. But, it seems that he doesn't know anything about that.
He's only rx'd the 6 hour infusion (which has not been honored lately, in spite of my talking to the nurse about it twice!). He just kept saying that the amount of the IVIG varied each time, and that is why, which is completely untrue.
Yes, I am infusing at home. I infuse ceftriaxone daily myself. Although that tx has been interrupted TWICE within 2 weeks by the pharmacy sending the wrong delivery method.
I had 2 days tx, then 4 days no tx, then 12 days tx, then no tx for 5 days, due to the pharmacy errors, scheduling with the nurse around these errors, and being deaccessed, because I had to deaccess myself, when he wouldn't do it for 3 days!! Unreal.
And the pharmacy is thoroughly mad at me and blaming me, while not acknowledging that they messed up what they delivered 3 times!! All this craziness interfering with my tx is beyond endurance!
I asked the pharmacy for the home pump balls for the ceftriaxone, which most infusion co's will send. They would not (obviously, they are being cheap, as they are not that much more expensive). When I got the pump for the IVIG, I asked to use it for the ceftriaxone, as I hadn't started yet.
First they said, no, then she checked, and said yes. But the first delivery they sent was just the bags and dial-a-flow tubing. The nurse tried to adapt it for the pump, but it didn't work, as there was too much air in the tubing. I lost 1/3 or one dose trying unsuccessfully to get the air out of the tubing.
I didn't even know that I could use that as just gravity flow, as I'd never done that and didn't know how. Then, they sent the cartridges for the pump with the ceftriaxone, which was what they should have sent in the first place.
But when we went to use it, the nurse discovered that the cartridges they sent didn't work with the pump they had sent me!! And they don't have the pump that goes with the cartridges that they sent!
So they had to send another batch, this time in just the bags with the dial-a-flow for the gravity method.
And now they are furious with me and blaming me. And I don't think they will go to bat for me to try and get a second 28 days covered (which usually doesn't happen in my state with Oxford).
And to boot: I have 26 days worth of ceftriaxone in my fridge in cartridges that I can't use!! And soon I will have to self-pay for the ceftriaxone and supplies. It kills me to have to throw this out. The nurse asked if there was a way to get it into the bags, but the pharmacy said no; it would risk contamination.
I told my LLMD all these woes and the problems with the nurse, and they are going to call the infusion company and nursing service on Monday. Which will only make them madder at me, but it has to be done, I'm afraid.
Sorry for the thesis!
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Rumigirl
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Posts: 3771 | From around | Registered: Mar 2008
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