posted 25 January 2005 16:55               

Sorry that you haven't gotten better with oral antibiotics. But, at least your doctor is willing to go on to IVs with you. I've been on IVs twice - in 2002 with a picc line for 4 months of IV Rocephin and 2 months of IV Zithromax, and again in 2004 with a port for 3 months of IV Rocephin. I'm currently waiting for my body to recover a bit from some complications I had with this past round of IVs so I can start back on a different IV med. I'll try to do my best to give you some info on ports.

First of all, here's a good picture I've found of a port with labels for all the different parts:

A Port
B Catheter [tubing]
C Subclavian vein
D Superior Vena cava
E Pulmonary vein
F Aorta
G Heart

And here's a few other good pictures (I'm big on pictures):

A port with a special angled needle in it. You can see the "chamber" well on here (the pink part).

My port itself is about the size of a quarter and it sticks out a bit so it's noticible if I'm wearing a low cut shirt. From what I've seen of other people's ports, though, mine sticks out more than others. It's good and bad that it sticks out more - good because it's easier to feel and access but bad because it's more noticible. But, I don't really care if people wonder what it is. I'm fine wearing whatever I want to when I'm de-accessed!

Basically, the port gets accessed with a special Huber needle that can be left in place for up to a week without needing to be changed. A dressing is put over it to keep the area sterile and it's very important to keep it clean and dry. Showering is a little tricky but if you have a sprayer in your shower, it's managable. Otherwise, careful baths could work and there is a thing called Aquaguard that is pretty good at keeping the area dry, but you still have to be very careful. When you're de-accessed, though, you don't have to worry about showering - you can shower and swim as normal.

The surgery itself was pretty easy - 20 minutes with more time before and after at the hospital for pre- and post-op. I was sore for a few days afterwards but I healed pretty quickly. I had a prescription for Vicodin that I used a little for a day or so after the surgery but after that there really wasn't any pain bad enough to warrant taking anything.

Now I'm left with a pretty faded scar above the port that's about a half inch to an inch across. I can also feel the catheter attached to the port under my skin. It's attached to the top of the port itself and then goes up through a vein and disappears somewhere near my clavacle (if that's the right bone).

I hope this info helps you. I'm happy to share any other info with you and try to answer any other questions you might have. It can seem scary and overwhelming at first, but it does get easier and eventually becomes second nature.

--Annie

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posted 25 January 2005 17:50            

That being said, having a port was a breeze. The nurse comes and does the accessing once a week (so I think that is a NO in terms of getting it done daily unless they will come daily for you, dunno 'bout that). You can do the de-accessing. As for the discomfort of accessing, it varies from person to person. For me, it hurt (skinny problem again!) so I put on a cream (Emla - prescription from your doc) to numb it about an hour b4 the nurse came. No Pain!

Overall, it worked out quite well. About a year later, a few months after I was done with IVs, I went back to the surgeon and had the port removed (easier process/recovery!) Suprisingly, a week after the removal, I got a little package in the mail. The surgeon had sterilized the port and sent it to me for a "treatment completed souvenier!" (twisted, eh?)

As for improvement on IV vs orals, I have done better on IV although not with Rocephin (didn't really work for me). My IV that helped a ton was Primaxin. Had Lyme-induced meningitis twice and about 10-12 weeks of Primaxin kicked its butt. I didn't feel better while getting treated though, it was after I finished. Then slowly over a couple of months I improved. I was so sick from the meningitis though that I had to relearn how to read and walk, so given you can exercise daily, you may have a totally different response.

posted 25 January 2005 18:02               

I'll try to answer your questions the best I can.

So when the needle is in it's accessed and when it's out it's called de-accessed?And when It's de-acessed it can get wet.
Yep, that's right.

Is it hard or painful to de-access it?
No, not really. It's just pulling the needle out. Accessing it is somewhat painful - a pretty big needle stick - but you can get numbing cream (EMLA cream) that you put on an hour or two before being accessed and you don't feel anything.

Would it be okay if I kept it de-accessed and only accessed it once every day for the IV treatment(30-60min.)?
Technically, you could probably do this, but it increases chances of infection and also would be more painful that leaving the needle in place between infusions. Normally, the port is accessed at the beginning of the week, the needle is left in place for the week, and then you de-access at the end of the week and get 24 hours or so off 'til the beginning of the next week. This is a chance to take a normal shower, go swimming, etc.

I learned to access myself and while I was on vacation I did de-access a few extra days between infusions (I was doing infusions twice a day) so I could go swimming.

My Dr. says that he has a 10yr old patient who can swim with the port and can give himself the daily iv treatments.Is it really that easy or did I hear him wrong?
You can swim with the port when it's de-accessed, but not when it's accessed because it can become infected. It is normal, however, to give yourself the daily infusions. Usually a nurse comes out once a week to access the port but not everyday to give the infusions. This is another reason to stay accessed for the week.

Did you get alot better after you did the IV rocephin?
The first time around, I got much better - probably to about 85% which was really good. But, the second time around, I just got sicker because my body was having a hard time handling the treatment. The first time I did end up with gallstones from the treatment and had to have my gallbladder removed because of it. So, keep an eye on that and make sure your doctor is aware of these possible complications. Ultrasounds every month or two are a good idea to make sure nothing is starting to form there.

Does getting the port sweaty put you in danger of getting an infection?
Yes, this can increase chances of getting an infection. But, I believe that sweat itself isn't supposed to cause the infection, it's just that the hot, moist atmosphere is ideal for growing bacteria.

Do you have to wear something to protect the port?
There is a thin, clear plastic dressing ("tegaderm") that covers the port while it's accessed. This keeps it sterile.

If someone bumped into you and hit the port would that be dangerous?
I don't think that would be dangerous. The needle can only go in so far before it hits the back of the chamber in the port. So, it's not like the needle can go through the port and poke you inside. It could, however, be painful if someone bumped you too hard because the needle might be jostled a little bit and cause a bit of pain.

I hope this answers your questions. If anything else pops into your head, feel free to ask. I'm happy to answer what I can!

--Annie

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“The best way out is always through.” –Robert Frost

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posted 25 January 2005 22:20               

I've heard that some people do pulse oral antibiotics.Is it possible to do the same with IV rocephin?
Yes. I pulsed Rocephin the second time I did it where I did one gram twice a day four days a week. This was not a higher dose of the medicine but the thought is that by not doing it seven days a week you a) give your body a break (it's a pretty harsh medicine) and b) you can possibly prevent the bacteria from going into cyst form where the antibiotic can't kill it. Rocephin often causes the bacteria to go into cyst form so you feel better while on the medicine but quickly relapse when you go off. This can be dealt with by adding flagyl to other antibiotics or, it's believed, by pusling.

What I'm asking is:Would it be possible for me to get a very high dose of IV rocephin twice(or3x) every week instead of a smaller amount each day.And get in in my arm once every week. If I did that then I would only need to have the needle accessed during the port IVs.
I'm not quite sure what you're asking here. Why would you need something in your arm?

I just do not want to have a needle stuck in me all the time.That scares me!
It's really not as bad as it seems. It takes a while to get used to it but it's easier to deal with after a while. I found it easier to deal with than the PICC I'd previously had.

Also, from one of the pictures it looks like the port pushes down on a muscle.Would it be harmful to use that muscle too often? Are you allowed to do push-ups or bench press with the port in? I am very sick but exercising a little every day makes me feel much better.
As with any IV device, you have to be careful what kind of exercise you do with it in. BUT, I think that when a port is de-accessed, you really don't have any limitations. I'm not totally sure what limitations there are when it's accessed but I'd imagine that you don't want to overdo it, more because it might hurt with the needle in than because of the port being by the muscle. I'm not sure about this, though.

The area of skin for the needle to poke through is rather small and the needle is so thick. Don't you run out of places to stick the needle?
You can use the same spots over and over. You don't have to find a new place each time. And since you're de-accessed for about a day at the end of the week of infusions, your body does start to heal so that you don't have to try to avoid the spot where the needle was last.

Do either of you know of anyone whose port got infected? How would I know if it is infected?
I haven't ever known anyone whose port got infected. I do know someone who had had infected PICC lines. The symptoms are the same, I think. You just have to look for unusual reddness and pain around the port and fevers. But, since a nurse comes out each week to change the needle, they should be able to pick up any signs of infection and let you know more of what to look out for.

This may all seem really confusing and intimidating, but it's really not that bad once you start with it.

--Annie

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“The best way out is always through.” –Robert Frost

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posted 25 January 2005 22:51               

I'm de-accessed one day/wk, and I work part time that day and swim. Other days when I feel good I workout at Curves, snowshoe and ski.
All my exercise is shortened in duration for this year, due to fatigue, but I still feel good from exercise as long as I don't overdo.

The first few weeks the the anterior chest muscles on both sides may be stiff and achey...one side from srugery, the other side from balance... This eases up over time, so remember to be non-judgemental with yourself and understand it will get better and you can heal!

I was really scared about the whole thing 12 weeks ago, now my port is like my little friend and partner in battle against the dreaded keets!
It really helped my recovery when I was able to say "my port" instead of "the port".

I just found out that I have another 3 months of infusing to do, and I'm ok with that because I am healing!

posted 26 January 2005 00:32               

I have had the same experience with my port. Not too long after I got it put in, I decided to name it and my brother helped me come up with the name "Winnie the Port" since I like Winnie the Pooh. Winnie and I are good friends now and we get along just fine. Even though it's not being used right now for treatment, I'm keeping it in because I will most likely be going back on IV treatment at some point in the not so distant future and it's so easy to maintain it.

--Annie

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“The best way out is always through.” –Robert Frost

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posted 27 January 2005 18:19               

I'll try to answer these new questions the best I can. If anyone else can help me out with some of this, please post some more answers!

Like,when you use the muscles behind and around the port(for swimming,push ups,benchpress) does that dislodge the port or cause probems?If I feel up to jogging will the swinging motion of my arms dislocate the port? How is the port held in place?
I don't think that anything could dislodge or dislocate the port. It's held in place very securely with stiches inside you so it stays in place very well. You'd have to try really hard to dislodge it. I have gone swimming with it without any problem (it was de-accessed of course) and I sleep on my stomach. Nothing has been a problem for me. It is a little difficult to sleep on your stomach when it's accessed, but that's to be expected since there's a needle in it.

How thick is the subclavian vein that the catherter tubing goes into?
I'm not sure about this. I think it's a fairly large vein. Anyone else know?

If the port fell out of place could it peirce the vein and hurt my heart?
As I said before, I don't think it could possibly come out of place since it's sutured in place. But, the port itself is not sharp at all, or it would be cutting you up inside. The needle cannot go into the catheter part (the tubing inside you that's attached to the actual port) because there is a "back" to the chamber in the port (see the picture in my first response).

I talked to my Dr. today and he said that most people who get ports are too sick/weak to exersice so he doesn't know what I can safely do.
That may be true for some people, but there are quite a few people who have ports and are living fairly normal lives. I personally know a little girl who has been receiving chemo (not very heavy doses and not for Lyme). She got her port in just before I got mine and she lives a normal life - goes swimming, runs around, and generally feels pretty good. So, it's very possible to be "normal" with a port in.

How thick and long is the tubing attached to the needle?
It's not that thick. Maybe an eighth of an inch or so. But, the needle has a little "gripper" attached to it where it bends at a right angle. This part does make a bump.

Here are a few pictures of the needle and tubing in the package (sorry I can't show you what it looks like when a port is accessed, mine is only accessed once a month for flushing right now. I will take some pictures when it's flushed next (in the next few days) so you can see what that looks like):

Is it visible through a shirt?
The gripper does make a small bump under a shirt but it's not that noticible.

Annie,you mentioned that I could get a cyst.Do you mean like a cyst inside my body?
It's not A cyst. The bacteria can go into cyst form which is different. Basically, the bacteria wants to protect itself so if it feels there is a hostile environment (i.e. antibiotics) that could kill it, it protects itself by going into a cyst. Then, when the environmet is no longer hostile (i.e. antibiotics are stopped), the cysts break open and the bacteria emerges, unharmed, and causes a relapse. So, it's NOT a good thing that it goes into a cyst because it means the bacteria can't be killed. But, it does mean that the bacteria is being killed and is protecting itself. The key is to break open the cysts while on antibiotcs so that they can all be killed. This can be done with Flagyl or, possibly, Plaquenil (some debate about this).

I hope this answers your questions!

Peace and healing,
Annie

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“The best way out is always through.” –Robert Frost

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posted 27 January 2005 22:56               

Annie does suck an incredible job answering questions! Annie I am so envious of your cognitive skills... something for me to look forward to!

Regarding exercise, My LLMD recomended the port to me because of it's fexibility. He said he has patience who are bricklayers who work with ports.

It did take a while for tenderness and stiffness to subside after my port waas installed. I babied my arm and shoulder for quite a while. I swam gently, and watched my lifting, and things that I carried over my shoulder.

Poling when I skied was difficult at first.
My DH carried my skis for me. Last week I swam w/o chest restrictions, this week I could backstroke. Today I shoved some snow, and can throw the frisbee for the dog with ease.

posted 27 January 2005 23:03               

Peace and healing,
Annie

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“The best way out is always through.” –Robert Frost

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posted 28 January 2005 21:28               

And here's a picture of the port after the needle is taken out.

Just thought these might be helpful!

--Annie

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“The best way out is always through.” –Robert Frost

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posted 31 January 2005 22:30               

My first access several days after the implant procedure was a biiiiig surprise to me. I'm totally cool with my port now ... don't even notice it ... but the first week or so freaked me out a bit, at least in part because I didn't know what to expect. (Probably my own fault for not asking more questions.)

posted 01 February 2005 13:47               

The pictures are awsome!

Yes, it would be great to have this whole message achived for future.....