Ok, So I have had this picc line in for 6 months now. Yes I am much better then before. I am tired
of it. It is so hard having it in. Now I am on Doxy that means I have to infuse twice a day for a
total of 4 hours. That is 1/2 of my day! I can not leave this in forever. I see my doctor next
week and I think im going to tell him I want it out and then I can go back on orals.
When did you guys decide to stop the IV? Everything in side of me is screaming...get it out!
Any thoughts?
Posted by Jillybean (Member # 8071) on :
I thought the PICC line could only be kept in for 6 months----that's what the LLMD and the hospital told me.
I've only had mine for 7 weeks, but I'm sick of it too!
Good Luck, Jill
Posted by timaca (Member # 6911) on :
Mine was in for 6 1/2 months, and was pulled due to a fungal infection.
It seems that if you have made good progress on it, and you are also on orals, and want a break from the picc, then do it. Just make sure you stay or the orals....
You can always put it back in, if you start to backslide noticibly. Hopefully, that won't happen.
Good luck....Timaca
Posted by humanbeing (Member # 8572) on :
From what my lld says, there are no statistical differences in potency between IV and orals as long as they are at the right dose.
Neither can cross into the cell membrane.
Posted by hiker53 (Member # 6046) on :
I had my picc line for 5 1/2 months before it sprung a leak. I didn't like it, but my stomach would not keep down oral antibiotics, so for me, it was a good option.
When it broke, I took it as a sign from heaven to stop antibiotics. Good luck. Hiker
Posted by believe3 (Member # 6216) on :
Oh my it can leak?! I haven't had any problems with mine. My Dr didn't say anything about how long I could have it in. I think you can keep it in as long as there are no problems. I just want it out.
Posted by iceskater (Member # 8655) on :
Any type of a complication can occur from any centrally placed line in the body: this includes leakage, displacement, infection. However, if maintained properly, most of these scenarios can be avoided. The length of time a picc line is left in depends on the hospital, infusion company or doctor's policy:generally, a few weeks to a few months. Again, it depends on the treating professional's policy.
It is tiresome to have a line in. Many precautions to take and the awkwardness of the line. All I can tell you, I understand your fatigue with the line. I have had 3 in my first year of tx. I continue to decline. Very aggressive lyme.
The decision to pull the line rests with you and your doctor: how well your body is or isn't responding to antibiotics, your success with orals vs IVs, lab results such as liver enzymes. I wish you strong days, improved outcomes, and what will be the right decision at this time for you. All of my best to you. Posted by believe3 (Member # 6216) on :
Thanks for your response's. I have done much better with the IV than I did with orals. There
have been a lot of up's and down's with both of them. I know I can't have this in forever and I
really want it out by the summer. I really want to wear short sleve shirts and go swimming and not
worry about sweating etc. Plus somewhere deep inside of me I feel like I have a very long way to
go to get better. I know I have years ahead of me for treatment and I can't have the IV in the
entire time. I do feel that I would not have gotten this far without the IV. It is such a hard
decision for me. I am affraid If I get it taken out I will go back to feeling like I did before
the IV. Oh the joy of this all...
Merrie
Posted by iceskater (Member # 8655) on :
I understand. irregardless of what you do, if there is any type of a set back, keep fighting and if that means taking a new street to walk on, then this is what must be done. Stay strong/ stay positive. There will be ups and downs- but stayed focused and stay thinking I will improve and get better. All of my best to you.
Swimming sounds great. I will keep that in the back of my mind for a positive mantra for the summer. Thank you.
Posted by WildCondor (Member # 434) on :
You can have it removed and go on orals, just make sure the doses are high enough. You can do injectable Rocephin, Claforan, or Bicillin too. Injections plus orals are a nice option. You can always get a new PICC put in, and having that line in that long is pretty high risk for infections. I got my central line sout due to 2 emergency cases of sepsis and I will never do Iv again unless I am going to die without it.
Posted by Gretchen P (Member # 8403) on :
I recently heard (from my accountant who has a picc line in due to a bone infection) that IV antibiotics go 100% towards the infection while orals go 40% towards the infection.
Given that rate I would opt for iv's over orals if needed. Also if your dr recommends continuing iv treatment ask him about having a port inserted.
It is just another option to think about since it is installed under your skin surgically and seems to have less infection rate. Also it can be left in long term.
Personally I have never had either so I could just be blowing smoke, but these are options I have heard of.
Posted by 5dana8 (Member # 7935) on :
For what its worth I had 6 months IV with no problems.
I gained more progress than i did on orals.
Orals have now trashed my stomach & intestional tract.
If I had to do it all over again, I would not be in a hurry again to pull my IV,had I known how hard the oral abx was on my stomach
Just my personal experience.
Posted by map1131 (Member # 2022) on :
believe, if there's something inside you telling you to get it out, you should consider listening.
Your body might be telling you enough is enough. HELP ME!!!!
Pam
Posted by believe3 (Member # 6216) on :
iceskater, thanks for your words of encoragement. You must be really tired of your line as well. Plus I can't imagine being poked three times! It hurts!
WildCondor, I hate the thought of shots. I had to do shots for my heparin. Ouch! My doctor has never mentioned going down that route. I wonder if he would recommend that?
5dana8, I have progressed much better on the IV than orals. I was on orals for over a year and I never had any problem with my stomach. So I am not worried about that. I can't leave this picc in forever anyway. My doctor said he has a patient that has had one in for 15 years. 15 years! No way, no thanks.
map1131, yes I am a huge believer in listening to your instincts. They are seldom wrong. That is why I feel so strongly about getting this out. I am scarred though. I am scarred I will slide back to the way I was before the IV. I guess I will have to wait and see. I can't let fear guide me. Im sure my doctor will say if I want it out then I can have it out. He has said all along that it is all about what I am comfortable with.
Thanks for all your replys. It is a hard decision. I guess part of me thought I would have insurance issues by now. I never really considered they would let me have this in so long. I guess I have really good insurance.
Take care everyone!!
Merrie
Posted by AZURE WISH (Member # 804) on :
This is just my opinion as someone who has been struggling with lyme for some time.....
The picc line is a pain in the.... well arm ....
I had piccs in for over a year...
My personal belief as a lyme patient if it is working stick with it because the next med may not work as well .... or at all.
I don't know how sick you are and I think that makes a difference on how much we are willing to tolerate.
... Just my opinion ..........
like someone else said it is really up to your dr. who will base it on labs, your progress, etc.
Best Wishes Posted by map1131 (Member # 2022) on :
Nobody is in charge of your healthcare, but you. Leaving all decisions about your health up to a doc to decide is NOT in one's best interest.
They are practicing medicine and they don't have all the answers on what is best for you. Nobody knows your body like you do.
And if you learn to listen real hard to what it is trying to tell you, you might actually hear what it needs, not what some doc thinks you need.
When my gut feeling was that abx were making me worse instead of helping, I started looking for answers. Thank goodness I realized there's other ways to control this bacteria.
Was I worried I'd get worse? At that time in my life it couldn't get any worse unless I died.
There's a big picture to all of this and abx alone is not going to cure all that ails a lyme ridden toxic body.
Pam
Posted by Kerryblue (Member # 4077) on :
I agree with Pam, If your gut says time to quit for awhile. May just be time. Every time I ignore my Gut feeling or our other true sense. Get my self into trouble. I try to over think it & my Gut gave me the answer.
Listen to your body...Is my advice, if it`s worth a hoot.
Think me have that for reason.
Think of the Tsunami, most animals left ahead of time. Hmmmmm are they smarter than us. Usually they sense something & are out of there. Or go for it when senses tell them. Humans over think thing, I am 1, paid dearly many a time. Kerry/ Take Care
Posted by believe3 (Member # 6216) on :
Like I said I am worried that I will slide back to how I was before but I am no wear near 100% yet. I
would say I am at 70%. I guess I was hoping that I would be feeling a lot better by now. I would
probably get better sooner if I just left it in for another 6 months or so. I just really feel
it's time to pull it. I may regret it. I may change my mind before I see my dr. I don;t know.
I don't know. What I hate most is that there is not a way to really know. There is no set rule for this. It is just trial and error. Just like everything else with this disease.
Thanks again for all of your responses. I will let you know what my dr and I decide.
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Good luck. Hiker
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Kerry/ Take Care