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How, exactly does IV antibiotics work?
Just thinking ahead. If I had to go to IV antibiotics, how does all this work?
I know that I would need to travel a distance to get the PICC inserted. Do they do the first infusion at that time? I would need to be capable of driving myself home is why I ask. It wouldn't be so powerful to initiate some sort of massive herx, would it? I wouldn't be to sick to drive home would I? And I am assuming that, from there forward I would do my own infusions - right? Anyone have any experience with IV antibiotics? I am clueless! But I just want to be more prepared if it comes down to it.
Thanks!
I know that I would need to travel a distance to get the PICC inserted. Do they do the first infusion at that time? I would need to be capable of driving myself home is why I ask. It wouldn't be so powerful to initiate some sort of massive herx, would it? I wouldn't be to sick to drive home would I? And I am assuming that, from there forward I would do my own infusions - right? Anyone have any experience with IV antibiotics? I am clueless! But I just want to be more prepared if it comes down to it.
Thanks!
I'm sorry I haven't gotten back to you but I developed a horrible head cold and my attention span has tanked! I have started on what you want to know but I want to write something that's factually correct and yet doesn't inundate you with stuff. Later. (Cough, cough)
I had a big conversation about it with my doc's PA a couple months ago. I'm avoiding it for now by doing Rocephin shots. They're not for the faint of heart (or rear), though. They are painful and leave me bruised and lumpy. My doc said I could get scar tissue, but I'm way past any dream of being a lingerie model, so I decided It'd risk the scar tissue over the PICC line. I'm lucky in that I have a husband who doesn't mind giving them to me... an upside to the reality that he's not usually the warm and fuzzy type. I do 4 shots in a row, then 3 days off. By the 4th shot in a week, I've really had enough and am grateful for the break.
A friend of mine did the PICC line and said it was great. She had no problems whatsoever with it, and found that she could even get the little portable infusion bottles and stick them in her purse if she needed to run errands during an infusion. My doc's PA said they have a fairly high drop out rate on the shots, and most patients prefer the PICC line as it's painless.
I had to drive myself home 50 miles after my first Rocephin shot. By the time I got home, I felt overwhelmingly exhausted. I just had enough time to call my car pool buddy to do pick up at school that day for me. I should have planned ahead for that. I stumbled through the rest of the afternoon and went to bed about 8 o'clock. I felt like my brain was shutting down. I have done them at night ever since. You'll have to figure out what schedule works best for you.
My big herxes on Bicillin and Rocephin were fatigue and rib pain. While the rib pain was quite uncomfortable and slowed me down, I could still walk and drive. Since a herx is usually an intensification of existing symptoms, you'll have to consider your own symptoms and whether or not you could risk being unable to drive safely.
You don't have to receive your first infusion when and where you have a PICC line put in. You can tell them you're concerned about your ability to drive home (fatigue is a well known reaction to receiving Rocephin) and that you want to schedule your first infusion at home by a visiting nurse or, at your LLMDs office, if it's closer to home. (My LLMD has an infusion room with a full time nurse, recliners, IV poles, and blankets to keep patients warm and cozy. )
If you want to do them yourself at home, you have to be trained. In my research, I spoke with one infusion pharmacy that said they required a nurse for each infusion or shot. I think that's more about their desire for more business and reduced liability than it was concern for patient safety. My insurance didn't require it and I didn't want it, and they had no exception process. I obviously went with a different pharmacy.
I think there are some pharmacies and insurance companies that require a nurse to change the dressing once a week. I think this is a good thing to help keep it clean and avoid infection. Just know you can't lift more than 20 pounds with a PICC line in, and you can't get it wet.
If you have kids who weigh more than 20 lbs but who still need to be picked up to be put in car seats, to prevent them from running into the street, etc., than that could be an issue for you. My little one was a runner, and I occasionally used a wrist leash even when I didn't have a PICC line! We used the "backpack bear" (harness) at crowded public places a few times, but she loved it, so it worked out well. If your kids are past the need for car seats or big enough to climb into car seats by themselves, you could make it work.
The first week is usually the toughest, so plan accordingly. I found on Bicillin and Rocephin that the fatigue eased up after that. On Rocephin, I can't say I started feeling better until about week 6 or 7. Some are faster, some take longer. You might feel worse at first too, or you might just slowly start to feel better. The blogging LLMD has decribed patients who felt nothing for the first 3 months, then started feeling better.
Don't latch on to much to someone else's story. You will have your own story. But it's good to know what the possibilities are. I'm glad you're considering the big guns. It's a scary step, but I hope for you that it's a good one.
A friend of mine did the PICC line and said it was great. She had no problems whatsoever with it, and found that she could even get the little portable infusion bottles and stick them in her purse if she needed to run errands during an infusion. My doc's PA said they have a fairly high drop out rate on the shots, and most patients prefer the PICC line as it's painless.
I had to drive myself home 50 miles after my first Rocephin shot. By the time I got home, I felt overwhelmingly exhausted. I just had enough time to call my car pool buddy to do pick up at school that day for me. I should have planned ahead for that. I stumbled through the rest of the afternoon and went to bed about 8 o'clock. I felt like my brain was shutting down. I have done them at night ever since. You'll have to figure out what schedule works best for you.
My big herxes on Bicillin and Rocephin were fatigue and rib pain. While the rib pain was quite uncomfortable and slowed me down, I could still walk and drive. Since a herx is usually an intensification of existing symptoms, you'll have to consider your own symptoms and whether or not you could risk being unable to drive safely.
You don't have to receive your first infusion when and where you have a PICC line put in. You can tell them you're concerned about your ability to drive home (fatigue is a well known reaction to receiving Rocephin) and that you want to schedule your first infusion at home by a visiting nurse or, at your LLMDs office, if it's closer to home. (My LLMD has an infusion room with a full time nurse, recliners, IV poles, and blankets to keep patients warm and cozy. )
If you want to do them yourself at home, you have to be trained. In my research, I spoke with one infusion pharmacy that said they required a nurse for each infusion or shot. I think that's more about their desire for more business and reduced liability than it was concern for patient safety. My insurance didn't require it and I didn't want it, and they had no exception process. I obviously went with a different pharmacy.
I think there are some pharmacies and insurance companies that require a nurse to change the dressing once a week. I think this is a good thing to help keep it clean and avoid infection. Just know you can't lift more than 20 pounds with a PICC line in, and you can't get it wet.
If you have kids who weigh more than 20 lbs but who still need to be picked up to be put in car seats, to prevent them from running into the street, etc., than that could be an issue for you. My little one was a runner, and I occasionally used a wrist leash even when I didn't have a PICC line! We used the "backpack bear" (harness) at crowded public places a few times, but she loved it, so it worked out well. If your kids are past the need for car seats or big enough to climb into car seats by themselves, you could make it work.
The first week is usually the toughest, so plan accordingly. I found on Bicillin and Rocephin that the fatigue eased up after that. On Rocephin, I can't say I started feeling better until about week 6 or 7. Some are faster, some take longer. You might feel worse at first too, or you might just slowly start to feel better. The blogging LLMD has decribed patients who felt nothing for the first 3 months, then started feeling better.
Don't latch on to much to someone else's story. You will have your own story. But it's good to know what the possibilities are. I'm glad you're considering the big guns. It's a scary step, but I hope for you that it's a good one.
Wow! Thanks a lot for the details.
I would obviously want to do them myself. So hopefully that IS an option. I doubt my insurance will pay for a nurse anyhow but even if not I have nurses in the family that might do it, if that works. My LLMDs office seems to be small from what I have seen of it. I am not sure if an infusion would be done there or not but it is quite a drive and not a straight shot (hard to get to and from).
Sorry if you mentioned it but how often are the IV infusions, do you know? And how long does it take for an infusion? So nervous, I just want to be prepared. But I am open to all the possibilities.
I would obviously want to do them myself. So hopefully that IS an option. I doubt my insurance will pay for a nurse anyhow but even if not I have nurses in the family that might do it, if that works. My LLMDs office seems to be small from what I have seen of it. I am not sure if an infusion would be done there or not but it is quite a drive and not a straight shot (hard to get to and from).
Sorry if you mentioned it but how often are the IV infusions, do you know? And how long does it take for an infusion? So nervous, I just want to be prepared. But I am open to all the possibilities.
Just a note to say -- I think you're holding up fine -- from what I can tell at the other end of a computer cable. It's appropriate to be concerned about this stuff, but you do it in a reasonable way, not suppressing the concern, but not wallowing in it either. That takes character and maturity! Hang in there -- and keep plowing ahead. You're doing good.
Short version:
1. You get the catheter placed in your arm. Usually just above the elbow.
2. That is usually done at a hospital or an infusion site (which is often, but not always, at a hospital)
3. The placement of the catheter is then checked via a fluoroscope/xray. (Always insist that is done. No short cuts, no matter how experienced the nurse!)
4. Then your first infusion of Rocephin or whatever is done at the hospital usually via an IV drip. This might take from 30 minutes to 1 hour. The longer the better.
5. After it's obvious that no severe reaction to the med will occur (sometimes you're asked to stay about another hour) then you're sent home. It's advised that someone drive you.
6. The next day a Home Health Nurse will come to your home to inspect the insertion site, perhaps change the dressing and give you instructions.
7. Your insertion site will be sore and probably have a reddish appearance around it. That's normal BUT at ANY time if red lines appear radiating out from the site------ call the Home Health Agency right away! That could be a sign of infection (and bad luck). Rarely is there a problem like that.
[When your doctor orders IV that always comes with a Home Health Agency included or (rarely) instructions for a person to appear at the infusion department daily. I don't know who makes the decision to have you do a 'push' or 'drip' infusion. My doctor decided a push was best and I totally agree! It allows for more freedom for the patient. An agency nurse will be assigned to you. She will be visiting you or calling you daily at first in order to check for possible infection and dressing changes. You can 'fire' that nurse if you feel she isn't following sterile technique. I had to do that at least once.
Assuming a ''push" is the method, each week a refrigerated box of 7 large syringes filled with Rocephin (assuming a daily infusion) will be delivered to you. Those need to be kept refrigerated but at least an hour or two before doing the push they need to be taken from the fridge. You then hook that syringe up to the end of your catheter that's protruding from your arm. (Details later) You then 'push' a small amount into your arm SLOWLY (details later), wait a couple minutes then another 'push' until the contents of the large syringe are gone. Should take about 40 minutes. I never rushed that process! Too fast and too much will be dumped near your heart.]
8. The nurse will visit you once a week after the first few days. (She might even be the one bringing the pre-filled syringes.) She will change your dressings, take blood pressure and other 'housekeeping' activities.
So all you have to do is infuse once a day, have the nurse visit you once a week. You can always call the agency if you have a question. Once, in the beginning, I panicked because I couldn't get the med to go in! Because my insertion site was nearer the elbow than ordinary I was crimping my line and blocking the med! They un-confused me over the telephone. LOL
Ephedra, you did mention having a nurse friend help you. Ain't gonna happen. LOL The agency is in charge and they and your doctor and insurance company are in full command of your health. If she wants to help in other ways, that's great.
Oh and the most important thing?
AT ALL TIMES, WITHOUT FAIL, STERILE TECHNIQUE HAS TO BE FOLLOWED
1. You get the catheter placed in your arm. Usually just above the elbow.
2. That is usually done at a hospital or an infusion site (which is often, but not always, at a hospital)
3. The placement of the catheter is then checked via a fluoroscope/xray. (Always insist that is done. No short cuts, no matter how experienced the nurse!)
4. Then your first infusion of Rocephin or whatever is done at the hospital usually via an IV drip. This might take from 30 minutes to 1 hour. The longer the better.
5. After it's obvious that no severe reaction to the med will occur (sometimes you're asked to stay about another hour) then you're sent home. It's advised that someone drive you.
6. The next day a Home Health Nurse will come to your home to inspect the insertion site, perhaps change the dressing and give you instructions.
7. Your insertion site will be sore and probably have a reddish appearance around it. That's normal BUT at ANY time if red lines appear radiating out from the site------ call the Home Health Agency right away! That could be a sign of infection (and bad luck). Rarely is there a problem like that.
[When your doctor orders IV that always comes with a Home Health Agency included or (rarely) instructions for a person to appear at the infusion department daily. I don't know who makes the decision to have you do a 'push' or 'drip' infusion. My doctor decided a push was best and I totally agree! It allows for more freedom for the patient. An agency nurse will be assigned to you. She will be visiting you or calling you daily at first in order to check for possible infection and dressing changes. You can 'fire' that nurse if you feel she isn't following sterile technique. I had to do that at least once.
Assuming a ''push" is the method, each week a refrigerated box of 7 large syringes filled with Rocephin (assuming a daily infusion) will be delivered to you. Those need to be kept refrigerated but at least an hour or two before doing the push they need to be taken from the fridge. You then hook that syringe up to the end of your catheter that's protruding from your arm. (Details later) You then 'push' a small amount into your arm SLOWLY (details later), wait a couple minutes then another 'push' until the contents of the large syringe are gone. Should take about 40 minutes. I never rushed that process! Too fast and too much will be dumped near your heart.]
8. The nurse will visit you once a week after the first few days. (She might even be the one bringing the pre-filled syringes.) She will change your dressings, take blood pressure and other 'housekeeping' activities.
So all you have to do is infuse once a day, have the nurse visit you once a week. You can always call the agency if you have a question. Once, in the beginning, I panicked because I couldn't get the med to go in! Because my insertion site was nearer the elbow than ordinary I was crimping my line and blocking the med! They un-confused me over the telephone. LOL
Ephedra, you did mention having a nurse friend help you. Ain't gonna happen. LOL The agency is in charge and they and your doctor and insurance company are in full command of your health. If she wants to help in other ways, that's great.
Oh and the most important thing?
AT ALL TIMES, WITHOUT FAIL, STERILE TECHNIQUE HAS TO BE FOLLOWED
I do the Rocephin shots 4 days in a row, then take 3 days off. It's a little over 5ml, which is a lot of volume. Most of the time, it requires two injections. It's a caustic medication, so it's mixed with lidocain for a shot. Sometimes, by the 4th day in a week, it's hard to find a good spot. I'm always relieved to have 3 days off, but by the next week, I can tell I need the next dose.
It's definitely a trade off for a PICC line, and from what I understand, most people prefer the PICC line. I think the Bicillin shots were easier to tolerate, but I think the Rocephin is working well for me now, so I'm going to stick with it.
When I did Bicillin shots I didn't feel I could give them to myself. The needle was longer than the one for Rocephin. (The Bicillin is done as a "deep IM" injection.) A nurse friend of mine would come over and do them for me when my husband was out of town. She had done IM injections in the past and was good at it. A handful of times, I went to my doctor's office where a nurse did it. (None of them were very good at it. I had to explain to them to go slow, etc.) I can do the Rocephin shots myself, but it's awkward and no fun.
The shots are not a time saver as I have to ice up first, then more ice for a few minutes after, then a hot pack for a while to restore circulation to help absorb the medication and avoid soreness.
Plus, I have to prep the Rocephin injection, which takes about 10 minutes. I had to get trained on that at my doc's office. It's a little tedious, but certainly do-able. (The Bicillin was easier. I got prefilled syringes that were stored in the fridge and we only had to warm them up.)
There are a couple other options... the chest port (not very popular) and another kind of line in the arm that stays under the skin so there's no line hanging out. That one has to be swapped out every week, so it has its downside, too.
The great part about all of this intimidating medical-ese is that most people feel better on IV meds or shots. Sometimes, a patient who can't tolerate them early in treatment, can successfully take them later after orals have knocked down the infection somewhat. You and your doctor work together to figure out what's best for you.
I asked for IV meds early on as I knew I'd need them given my hefty neuro symptoms. I'm really glad I'm on them again now, as orals had stopped working.
It's definitely a trade off for a PICC line, and from what I understand, most people prefer the PICC line. I think the Bicillin shots were easier to tolerate, but I think the Rocephin is working well for me now, so I'm going to stick with it.
When I did Bicillin shots I didn't feel I could give them to myself. The needle was longer than the one for Rocephin. (The Bicillin is done as a "deep IM" injection.) A nurse friend of mine would come over and do them for me when my husband was out of town. She had done IM injections in the past and was good at it. A handful of times, I went to my doctor's office where a nurse did it. (None of them were very good at it. I had to explain to them to go slow, etc.) I can do the Rocephin shots myself, but it's awkward and no fun.
The shots are not a time saver as I have to ice up first, then more ice for a few minutes after, then a hot pack for a while to restore circulation to help absorb the medication and avoid soreness.
Plus, I have to prep the Rocephin injection, which takes about 10 minutes. I had to get trained on that at my doc's office. It's a little tedious, but certainly do-able. (The Bicillin was easier. I got prefilled syringes that were stored in the fridge and we only had to warm them up.)
There are a couple other options... the chest port (not very popular) and another kind of line in the arm that stays under the skin so there's no line hanging out. That one has to be swapped out every week, so it has its downside, too.
The great part about all of this intimidating medical-ese is that most people feel better on IV meds or shots. Sometimes, a patient who can't tolerate them early in treatment, can successfully take them later after orals have knocked down the infection somewhat. You and your doctor work together to figure out what's best for you.
I asked for IV meds early on as I knew I'd need them given my hefty neuro symptoms. I'm really glad I'm on them again now, as orals had stopped working.
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