My picc line was pulled at 26 days because I got a very bad reaction to ALL adhesives. I do feel much better without it. I thought they'd just do the other arm, but they feel my adhesive allergy is too severe.
I am just starting to feel like I can think, drive, work, parent, etc. But I'm not better yet.
I've been driving 100 miles EACH WAY EACH DAY for treatment (and that's with hubby or my mom driving me). So, my doc arranged with a local ID doc's infusion ctr.
I went this morning the first time. The infusion nurse was HORRIBLE. She immediately starts lecturing me that they DO NOT treat with rocephin for more than 28 days (I would be 29 days today).
I tell her that it's not my decision, it's up to the doctors and my doc and her doc boss spoke via phone yesterday so I believe it's all worked out. She proceeds to hammer me. I tell her to page her boss and get confirmation.
Her boss doc confirms I get infused today but now I have a consult with him tomorrow. The nurse tells me that insurance NEVER pays for more than 28 days. I tell her that Cigna has already agreed to 2 more weeks and that even if they didn't, getting well is more important to me even if I had to pay out of pocket.
Then she STABS me and blood goes flying everywhere. She can't get the line flowing and when she does she dumps 2 grams of rocephin into me in less than 3 minutes!!!! Is that ok? My home infusion took 30 minutes.
I was so mortified. I'm not sure how someone who isn't as pushy as myself would deal. I was in a suit and I made sure that the nurse understood that I the doc's office built their building with financing from my agency which I had to approve!!!
I am irate at being treated that way. And I am terrified about my meeting with DR. ID tomorrow. I feel like I'll be making my case and the case of all other lymies in my area.
Dr. ID won't even be the primary doctor, it will still be my llmd overseeing treatment so I pray they say yes. Otherwise I'm driving for infustion again.
As if someone who isn't sick would want IV anything!!!
And GET THIS, the nurse tells me that no one is better after 28 days but it just takes 3-4 months after iv to resolve. My thought is people just give up calling them or they are too sick to call after 3-4 months.
Posted by Nebula2005 (Member # 8244) on :
I had to have my PICC line pulled because of arm swelling.
The problem was at least in part due to my home care nurse pulling too much of it out when she was changing the dressing one week.
Then the next week she did the same thing. This put the inside end of the PICC in the middle of my collarbone, where the vein is smaller than where it's supposed to end, in the middle of the chest.
I could have changed the dressing myself with a little help, but my doctor's office wouldn't let me infuse myself unless I had a nurse come and do it.
The nurse at my doctor's office noticed the swelling when I went in for a follow-up after six weeks of pulsed treatment. I was pretty bummed, because Rocephin was helping me.
Because of this, to get more Rocephin I had to drive 50 miles one way once a week for a month to have this IV nurse at the LLMD's office start a peripheral line.
It would last about three and a half days of twice a day infusion every week before it got blocked, which was one dose smaller than I was supposed to get, which was okay.
It was really hard to keep the needle dry for showering since to find a good vein, she had to look all over both forearms and hands.
It was still better than the stress of having the nurse come to the house, because she was like a bull in a china shop, and I was the china shop.
I can't believe your Nurse Ratchett sent the entire dose of Rocephin into your arm that fast. That nurse was sure on a power trip!
I don't wish to offend, but nurses are some of the scariest people.
Even the IV nurse at the LLMD's, who is very good and very careful starting peripheral lines, tries to blame my symptoms on something other than Lyme, because I've gotten the best medicine and I'm still not well.
Luckily, my doctor hasn't given up on me and is now treating me for Bartonella.
I hope this works out for you. Good for you holding your ground!That nurse needs to be smacked upside the head!
(Does all this make sense? I'm feeling pretty loopy this afternoon.)
Posted by lou (Member # 81) on :
What a nightmare. Hard to believe those people are substituting their judgement on your treatment, when you are not even their patient. Any way you can point out that you are not their patient? Probably scarey to be confrontational when you need their help.
But here is the url for official info on infusing rocephin, which says 30 minutes. Maybe print the whole thing out and show it to them. Wouldn't hurt for them to know your profession. Malpractice comes into my mind at this point. If they are called on this infraction of infusing time, maybe they will be less loudmouthed about how you should be treated.
So you are getting stuck every time....no picc? Wondering if IM done at home might be less stressful and not anymore needle stabs than the system you are now using.
Posted by northstar (Member # 7911) on :
If you do a search in medical, for adhesive allergy there are about 4 posts/threads about this problem. (the infection with IV, not the nurse).
Some had solved it.
Northstar
Posted by seibertneurolyme (Member # 6416) on :
Why can't your current LLMD train your hubby to do the infusions at home? -- would take much less time than the drive.
I have been trained to do hubby's IV meds -- haven't really had any major problems during the 5 plus years he has had a Picc line. I am an accountant and have no medical background at all.
Just an idea.
Bea Seibert
Posted by catskillmamala (Member # 12536) on :
Thank you folks for your kind words.
Lou, I am outraged that the NIH site says rocephin should be infused over 30 minutes! No wonder I felt so bad.
Northstar, Yes, I had searched around for alternatives. We tried duoderm, paper tape, pectin dressing as well as vacuum adhesive. No matter what we tried, my skin was making yellow puss that would sit around the infusion site. Yuck.
The home healthcare people actually did skin tests on the other arm where we tried bunches of antiseptic/dressing combos. All reacted!!
Now I am prepping my case for my meeting with the doctor tomorrow. And yes I will mention that the nurse infused me in 3 minutes.
Posted by ByronSBell 2007 (Member # 11496) on :
When I had my picc line installed the following week myarm just went crazy. It turned red, got bumps and rashes where the tape was and even a couple blisters.
My nurses took off all the tape and dressings.
They used the little skinny steri-strips to help hold the line in place and wrapped the site with a soft/protective gauze followed by stretchy wrap on top of the gauze.
After a couple weeks my arm now looks completely normal and nothing bothers me.
Posted by amkdiaries (Member # 7035) on :
I wouldn't have them touch me again! I went through a similar experience with a local hospital. My LLMD ordered an infusion and I had to wait two hours while the nurses conversed with the doctor about the order.
Finally the head nurse came in and said that they didn't agree with the treatment plan and would not give me the drug. My husband was furious because he had taken time off work to come with me and told her what business was it of hers to decide on my treatment. She had my LLMD's orders and it was not her place to decide what or what not to administer.
We then walked out and I wrote a complaint letter to the administrator of the hospital.
Try to find an IV certified nurse in your area to come to your home and place a peripheral line which can last several weeks if taken care of properly.
Posted by Parisa (Member # 10526) on :
See if you can't get an infusion company to come to your house. Try OptionCare: (www.optioncare.com), Crescent Health Care(www.crescenthealthcare.com). I know there are others just don't know what is available in your area.
Good luck tomorrow!
Posted by Parisa (Member # 10526) on :
Here's one located in New York. Don't know if they cover your area.
I am going to the ID doc's infusion center for weeks 5-6. I had a consult with him where he tried to convince me that 1) I don't have lyme and 2) more rocephin won't help even if I do have lyme.
A new nurse has been doing the infusions with daily needle sticks. The second day was ok. The third day hurt like h3ll. Even a small push of saline hurt, and now I'm bruised.
The new nurse clearly doubts the center's strict 28 day protocol and she told me that she thinks most alzheimer patients are advanced lyme!
AND they are not pushing the rocephin-they're letting it drip and it takes a full 20 minutes thank goodness. I brought one of the websites from NIH that you kind folks provided which said 30 minute infusion.
They want to put a hep lock (sp?) in, but it's hard to keep a needle in overnight without adhesive. Today I am going to try some tape to keep the needle through the weekend since they are afraid they will run out of veins.
I lool like heck and even hubby says I should wear long sleeves.
In other good news: my regular primary doc will do weeks 7-8 of iv in their office so I will only have to drive to my llmd's office on Saturdays and Sundays.
Posted by lnc2000 (Member # 18440) on :
Catskill....
what type of infusion would involved a needle? did you have a picc line installed in your arm. i had picc line and i been doing injection myself, no needle at all.
the home nurse just attached an extention long enough that i can hold the tip with my hand on the same side of the picc line.
Maybe you should look where else for another infusion center. my is InfuScience, don't know if they in your area or not. Wish you well.
Posted by catskillmamala (Member # 12536) on :
I had to have the picc pulled because of adhesive allergy and then went to daily needle sticks to get my dose of rocephin.
It's funny to see this thread pop up again because it's been almost a year since this experience. I did wind up having to drive for daily needle sticks for weeks 7, 8 and 9 of my rocephin experience.
Cigna paid for it- thank goodness. I weaned to orals and rife and that's where things stand.
I am MUCH MUCH MUCH better- able to work full-time, raise 3 boisterous kids and be a partner to my honey. But I still take handfuls of pills and try to take it easy.
That nurse is BRUTAL and others in my lyme support group have dealt with her.
The ID doctor at issue told me that he "wrote the guidelines for MVP and Wellcare that calls for termination of iv for lyme at 28 days."
He told me there is not babesia here even though I test positive for it- it must be a false positive. And he told me that it takes months to have the "inflamation" from lyme resolve that's why none of his patients are well after 4 weeks.
And to think this man is the gatekeeper Infectious Disease doc in my county. GRRRR.
Posted by WildCondor (Member # 434) on :
Why aren't you doing them at home? Driving 100 miles is crazy. Do your IV's at home, gosh! Stay away from ID doctors, they are all horrible.
Better yet get a port or a hickman catheter so you never need any adhesives on your skin!
Posted by TerryK (Member # 8552) on :
I'm so glad you are done with the IV and are doing so much better!!