Picc, Port, Or Stop

[AJVDK]

PICC, PORT, or just give up and wait a while?

Ok, my PICC is going, my doctor is trying to baby my PICC along put it's not going to last much longer. My home health nurse/team think it would be best for me to go the port route. My doctor is still trying to think about whats best as I have a pacer, and I had so many infections already. I am to the point of just stopping the the IV abx for the lymes..... I know that I can handle the oral with all my ulcers..... I even trying to think what would happen it I just stopped treating the lymes, as I have felt so much worse since we start the treatment. I am in late stage lyme, but I really still think what if this is somthing else also. As for the POTS, and NCS, I am still having passing out spells, I am starting to have more heart racing then I have in the past, and my b/p is still very low. I am having jont pain, and migraines, all the time. Also I am on IV saline 4 times a week.

Does any one have and ideas? I was in the ER last night as the pain in my arm is so bad where my PICC is, iright now there is no blood return, so they said they need to TPA the line, but right not as red as the site is the are just waiting on the blood culters to come back. I will here on them soon!

Sorry I am just worried, and not sure what to do!!!!!

[flop]

Oh Amy, not another PICC problem - you have had more than your fair share of trouble over the recent months. Others can now see why PICCs for IV fluids are only considered as a last resort. I know yours is for IV antibiotics which is rather different.

Sorry can't give any advice on PICC/PORT/Stop Rx - you will have to be guided by your doctors.

What does your cardiologist think about a port with the pacemaker?

((((((HUGS))))))

Flop

[DancingLight]

Amy,

Did you see my post under your other topic?

I just don't have any more words of wisdom....sorry....

I hope your docs can work together, particular your Lyme doc, to find a solution...

Emily

[Ernie]

Hi,

I had a PICC line for a month while a was in the hospital and I wanted to keep it when I returned home and the doctor told me that there were two major risks: infections, bleeding to death.

What made me decide against keeping it was bleeding to death. I know how often I faint and how my arms fly in the air, and because I paralyse for at least 5 minutes after fainting I would be at high risk for dying. It was a difficult decision to make has a wanted a PICC line so badly and now I had one in. I know you don't paralyse so your situation is not exactly like mine.

[corina]

ami,

this is a very difficult decision for you to make. the risc of infections is so high, that i think i would get it out, as i wouldn?t want that ot happen (anymore). but what to do with saline 4 x a week. do you have any idea why the port could be a problem (other than another "thing" stuck into you?).

i am sorry that i can't be of much help, i hope you will be able to make the right decision!

corina

[goldicedance]

Amy, dear...

If I recall, you have a pacemaker. I would thoroughly check with your pacemaker physicians the danger of putting in a medaport. I was told by a very kind and wise doctor in Ohio to get the port taken out immediately if not sooner because of the high risk of getting an infection that could very easily be transported via the leads to the heart. As soon as I got back from the wilds of Ohio, I got the port taken out. I used the port for chemo and then for hydration. This erudite doctor in Ohio told me that he would not have allowed me to get the port in even for chemo given the extremely high risk of getting an infection that would carry through to the leads of the heart.

Think it over very carefully. You have already suffered from PICC line infections. You don't want to get a cardiac infection.

Those are just my thoughts. Perhaps doctorguest, if you read this and are not too busy, might like to comment on this problem.

Lois

[SunsetParadise49]

((hugs)) I have no advice but I hope you and your doctors can figure something out!

[dizzygirl]

im sorry amy that you are dealing with this.. sending you big cyber HUGS!! wanted you to know that im thinking of you

love and BIG HUGS

dizz

[AJVDK]

I think what we are going to do right now is I talked to my doctor today, and we are going to baby this PICC along that I have no, unless the bloodcultures come back bad, (get those friday) Then when this line goes bad we are going to go with another PICC, as I need the abx. We pulled a PICC about due to infection last month, and left in out 4 days, I got so sick, I was passing out, headaces, jointpain, neck pain, everything came right back from the lymes, plus I was so dehydate (sp?) They doctor had me do extra fliuds, just to get back to a base line. I am not sure if the lymes, pots, ncs, low blood volume, or what is causing all the problems.

Lois- My cardio was the first one to but my PICC in at we where out of otions, it was the same doctor that but my pacer in. I am vert worried about getting my pacer area infected. The on good thing is the are drawing bloomd all the time making sure I an not geting an infection, as they are very worried also, but right now we have nothing better to try.

I am not sure what to due, I thought about going back to Mayo, or Cleveland, but I am not sure I would learn anything new. I guess that where I am at. I really want to get better.

Thanks for all the support!

[yogini]

I would agree with the others and tend to not have any kind of line or port - sepsis just seems to scary. Is there any way to slow down the lyme treatment (as opposed to ending it) or take it without an IV? I think this is ultimately a question that you need to answer for yourself, because you are closer to the situation and know more details. Hope you feel better soon.

[Kitsakatsa]

I have a port. I love it. I had a Picc twice- but the adhesives in the dressings were burning my skin and down into tissue. The port is wonderful. I was sore for about a month and every once in a while I have a sharp pain, but other than that it has been a dream. I was concerned about pots+general anes, so I had it done in Interventional Radiology and under Versed. My experience was very good. I am so glad that I have it. It is a world better than the picc line!!

[goldicedance]

I think that the problem with a medaport is that the infection can get carried via the leads to the heart.

I would ask your cardiologist very pointed questions about the risk involved of a port and a pacer.

The issue deals with the risks of getting a heart infection via the leads via the medaport. I cannot speak about the PICC line and the pacer.

I loved having the medaport until Dr. G told me not to ever use the medaport ever with a pacemaker. He said I could leave it there but not to get it flushed and not to use it. As soon as I got back from Ohio, a doctor in DC removed the port, which is much easier than have it placed.

Good luck in your decision. I would suggest gettiong a second opinion from another cardiologist, who has no vested interest.

[doctorguest]

Hi everyone,

Just saw this post. I agree with Lois completely and with her doctor who said that the port and the pacer are a bad combination. Is it possible to take oral antibiotics instead of the IV? If IV is needed, is it possible to combine it with oral treatment so that IV infusion can take place several times per week, not daily, through a peripheral vein catheter? Is Lyme treatment producing any clinical and functional improvement in your health status and is it worth continuing? These are the questions that your cardiologist and your lyme doctor should be answering. I hope that you can find a solution that suits you best - it can be difficult to know what's best, and I agree with Lois again that a second or third opinion may be helpful in this situation.

[taylortotmom]

I can only answer based on my experience. As you know I have a pacer and until October I had a port through which I received daily iv saline. I LOVED my port- however, after getting SEPSIS my feelings changed quickly. I did not think I could make it without my port- but I have even though it has taken quite a bit of adjustment. I now have to drink a gallon of gatorade on my good days and there are bad days when I long for my port (especially when I am migraining and keeping nothing down).

The port conversation will come up again when I see my cardio this Friday. He was very skeptical of me not having the port which I know is contrary to what many other people with pacers have been told by their doctors. Again, it is such an individual thing- the risk of infection verses a better quality of life. For me, right now, I am okay without my port but I do miss it at times. Good luck, Amy I hope you are comfortable with whatever decision you make.

Carmen

[DancingLight]

Amy,

I really agree with Lois and Doctorguest...

I am not doing IV abx and am seeing slow improvements. Doctorguest put into precise words what I was trying to express to you in my last post under your last topic before this one...

It may take a lot of tweaking, but there are ways to treat your Lyme without needing a port or a picc...if your Lyme doctor sees it as 'his way or the highway', then perhaps you need to work with a different Lyme doc?

Emily

[AJVDK]

Thanks for all the info you all added. I am really having a hard time with this, as my quality of life is so bad, and we did a test run last month with out a PICC, and I got so sick, so my health care proviers all feel, along with me that at that time I needed to have the abx, and fluids. We have tried in the last 3 years every med out there and nothing works, it even to the point that there may be more wrong then we think. I am just to the point I can't handle anymore test.

The reason I got to the point of picc, port, or stoping was there are some many people in my health care telling me all different things. The only thing they all agree is that I need the fliuds, and abx. I was the one that was to the point of stoping as I am sick of the infections. Sick of worry about everything I get hot, and cold feeling and dizzy asking myself is this an a infection coming on again or is this just me. And my body just seem to reject the picc's.

The proplem is at this time the risk out ways anything at all. Is hard as there is so much on the line, but I also beleive there has to be quality of life, or its really hard to go on. I know I am on a very fine line, and I am also going to get a 2nd option, to see what they think. I know so times you need somone not so close to see if there is somthing we are missing. But the thing is when I got the infection the first time and was in the hospital for 7 days, the took me off of the fliuds to try so test it in the hospital , and I passrd out on thrm also, it comes to a point of safty for me also. They agreed and they where the one to place my second line. This was also a 2nd cardio, and nero doctor. Thats why this is so hard is the done side of stoping.

I do think that is I could go to a differnt, med and do the four days on 2-3 days off, as some lyme people do and do a normal line, that that could be safer, but they have so much problems getting my veins we are now done to my legs, and neck for that, but if that what could be safer then it an idea. I am going to talk to my doctors.

Again that you all for the input, and hopfully you all see why this is so hard for me. I just don't know what to do, at this point my picc line is holding out, but not for long, so I am hoping I will find whats right for my safty, and for the quality of life!

Talk to you all later!

[Rachel]

Dear Amy,

I'm keeping you in my thoughts. I'll be praying for wisdom for you and the doctors as you decide what is best to do. I hope that your quality of life can improve some and that you'll stay safe throughout whatever procedure/treatment you decide is best.

Hang in there. We're pulling for you. Please continue to let us know how you're doing.

Take care,

Rachel

[lthomas521]

Here is a link to a consensus document from the Infectious Diseases Society of America about how to treat Lyme disease. It discusses not only the recommendations but the evidence behind the recommendations.

http://www.journals.uchicago.edu/CID/journ...2033763662Guest

A lot of patients seem to do well with oral antibiotics, and even the patients on injectable ("parenteral") antibiotics seem to be taking them for 28 days or less, usually around 14 days. How long have you had this PICC line? Are you sure that you still have active Lyme disease? Is it the only thing you have? You could have gotten more than one infection from the same tick, or you might have some other disease lurking in the background that is making the whole situation worse. Going back to Cleveland or Mayo sounds like a really good idea to me.