Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 I was on 8 months of IV rocephin. What would you like to know? Always have a nurse change the dressing.......and never use a pair of scissors. If the line gets cut, pull it out.......the pumping of the heart can pull it inside the body. That will never happen as long as no one is playing around with scissors. It will go pretty smoothly, if you follow all the directions of your nurse and Dr. I was not your best patient......I live on a lake and went out in a canoe and fell in the lake (hence the line got infected). Seems I was always getting the line wet and needed dressing changes.........many times I attempted to make the change myself. NOT A GOOD IDEA. I've heard of lines lasting for many months.........Being a PE Teacher (very active), and not always doing what I was supposed to.....caused me to have five lines put in during this time. One got infected, one got cut (stupid mistake), two sprung leaks, and one had to be put into a different vein, because the vein was too small and wasn't happy with the line. Now, mind you I am probably the unusual......... You will probably not have any of this happen. When showering, I used a plastic cover over the arm......(that they use over a cast)........that worked out well.....you can pick them up in a good pharmacy. Well that is about it.............. I'm sure things will go smoothly for you. Make sure you keep the line covered. Co-band works well for that........and there are all sorts of neat colors. You can always pull a cut-off knee sock over it as well. connieknwnj It must happen in your mind before it happens in your life! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 > I have a 14-year old daughter on her second week of IV treament > (Rocephin) for Lyme. J , when I was first dxed that is what I did, 14 days IV Rocephin followed by an open rx of ( I think) 400mgs Amox, that Dr told me that this protocol was whats listed, but wasn't enough and I should find a Lyme Dr. That Dr upped my Amox and added Doxy along w/ the dxes of Ehrlichia and Babesia. Rocephin did nothing but wear me out, so much so that I would fall asleep before they even got the needle in. I tried to work through it but couldn't and went on Short Term Diss through work. I was sleeping all the time, breaks, lunch, all evening/night, couldn't stay awake, if I sat, I was asleep. Hope this answers your question, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 Here's our experience so far - Our 17-year-old daughter has been on IV Rocephin for about two months now. She has always herxed badly with everything, so we consulted with a pain management specialist prior to starting the IV. He has given her patch for pain, and something called Singulair, which is supposed to keep the dying spiroketes from releasing toxins. Our daughter was doing quite well with this mix and we were seeing improved energy and very little discomfort. Our Llmd has since added Doxy to the mix and now the pain meds are less able to keep up, but she's still tolerating it all, which is better than when we started a year ago! Our best to you and your daughter - Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 Hi, I am in my 8th week of Rocephin and unlike the post earlier that had 5 lines ....I have had a wonderful experience. I do not shower ( I take baths), I only walk for exercise hence I do not sweat too much, and aside from one small slip-up, have been sailing along. If you plug in the Rocehprin, MAKE SURE you get the blue clip open right away- if you don't well, blood comes into the line-that was my slip-up but all turned out well after flushing with 10 cc of saline and then putting in Heprin. Goodluck!! Char jar1329 <julie@...> wrote: I have a 14-year old daughter on her second week of IV treament (Rocephin) for Lyme. Can anyone share their experiences with me? Many thanks, J Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 I too have had things go well with the IV Rocephin. I believe I am going on my 8th week. I have an NP who comes once a week to change the dressing. It is so much better than being a pin cushion. My behind was really getting lumpy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 <<<<<Hi, I am in my 8th week of Rocephin and unlike the post earlier that had 5 lines ...>>>>> I said I was an unusual case........that most lines last months. ..........I live alone and quite a distance from the nurse that would come and take care of my line. Often I found myself taking care of the line myself....I didn't have much help... Connie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 I saved this with another hint someone sent....don't worry about it after you read it. Re: [ ] Questions on IV Treatment Hi, I am in my 8th week of Rocephin and unlike the post earlier that had 5 lines ...I have had a wonderful experience. I do not shower ( I take baths), I only walk for exercise hence I do not sweat too much, and aside from one small slip-up, have been sailing along. If you plug in the Rocehprin, MAKE SURE you get the blue clip open right away- if you don't well, blood comes into the line-that was my slip-up but all turned out well after flushing with 10 cc of saline and then putting in Heprin. Goodluck!! Char jar1329 <julie@...> wrote: I have a 14-year old daughter on her second week of IV treament (Rocephin) for Lyme. Can anyone share their experiences with me? Many thanks, J Questions and/or comments can be directed to the list owner at -Owner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 My biggest problems with the line: 1. insertion process was horrible. I pass out from blood draws sometimes, so my physical reaction to a line was BAD. 2. when it was first inserted, after they messed up on my left arm, they put the line in too far on my right and it was triggering arrythmia every time I brought my arm in towards my chest (brushing teeth). I was told it was protocol to put it in that far, just like it was protocol to do insertions without sedation (lol in retrospect - the only way they got it in me after the failed attempt in the left arm was with LOTS of sedative and several staff holding me down). I had to get my cardiologist to give me the right vocabulary, but I eventually convinced the radiology folks to pull the line back a bit so I could brush my teeth without brushing my heart too. 3. drinking enough fluids to stay adequately hydrated in June (when I had my line in) is really hard! It requires a strong bladder and a lot of discipline. You have GOT to bring that water bottle everywhere, and a spare set of tissues in case you need to " go " somewhere less than well equipped. 4. I did nightly hep/saline flushes. I sometimes had problems towards the end of the treatment, when I had finally gotten used to the line, with going out somewhere and forgetting to bring my heparin flushing supplies. After getting stuck out once or twice with a mad dash home to get " flushed " in a reasonable time, I decided that if I was going somewhere that might even possibly keep me out past my flush time, I would bring my supplies in a kit with me. I kept them with me where ever I was if I was out so they wouldn't sit in a hot car. 5. Most of my life, I have been very independent. I like to have control over my own body and I don't like relinquishing it to anyone. So having the line in my dominant arm and being on lifting restrictions and having even my ability to bathe myself limited was really hard for me. My partner and I had fights because I was emotionally stressed, had neuro-lyme, and I was often angry or distraught about being so dependent. I can only imagine how going through that at 14 would feel, given that at 14 there are already issues of independence coming up even for someone physically healthy. What I told myself to get through was that wanting to be independent is all well and good, but if I took it to a level where I hurt myself or mess up my line in an effort to do it all myself, I could end up needing even MORE help for longer and I would hate that. It was short sighted and childish of me to expect that I could continue to act like I could lift everything, vacuum everything, wash my hair without help, etc. just because I didn't want to say " help me please " . I had to limit my lifestyle somewhat, I had to prioritize what I really needed to do vs. what I wanted to do, and how badly I wanted to do it. I couldn't expect to go at my usual pace, then get frustrated with myself or my support people when that couldn't happen. Realizing all this helped me ask for and accept the help I needed, and it helped me be more sensitive to the abilities of my partner and family. In fact, it has changed my outlook on asking for and accepting help in general, so that is one good thing to have come out of this I guess. 6. anxiety about the line (eeek! what's this thing in me!) was difficult to handle. I think that was the worst part. I got over it to some level, but it difficult. My best wishes for you and your daughter. - Quote Link to comment Share on other sites More sharing options...
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