Re: Started IV treatment- Questions

[Guest guest]

I too had a Groshong catheter in my chest and had NO problems with it.

What I learned about the placement of the tube that comes out of your chest

is that you can actually tell the surgeon before hand where you want it to

exit. Of course it has to be within some general boundaries, but you can

choose. Many male surgeons have no idea about where to place an exit tube

on women. Sometimes they will ask a female nurse in the O.R. what they

think, but most of the time they just guess. (I heard a story about a

surgeon placing the exit tube right under the breast of a woman. This was

completely stupid because the woman wore bras with underwires.)

Of course this means being a little aggressive with your care, but we all

should be getting used to that.

Robynn

Re: [ ] Started IV treatment- Questions

> From: <swsftwtx@...>

> Eventually, I had a Groshong catheter put in my

> collar bone area and exits my chest, much much

> better. I had not wanted a foreign object in my

> chest but the nurse we liked the best told us the

> Groshong was a " closed " system until opened with a

> syringe of saline, and less likely to get infected.

> When the nurses were having to stick me 3-4 times

> and I saw it was bothering them more than me, I

> tried to find someone in radiology who would fix

> Picc line in, but no one would. My only choice

> left was to start on legs and doctor did not want

> that at all or to see surgeon about Groshong.

>

> I had the Groshong catheter put in as an outpatient

> and there was no difficulty. Only problem is that I

> am short, so the exit for the dual lines is just above

> end of top of breast. Not the best place in the world

> but guess where the surgeon felt it was better coming

> out. I've had it in 6 mo & and plan to keep it as long

> as I can, even if I cannot get more infusions anytime

> soon. As long as the area is cleaned and dressed and

> the two tubes flushed a couple of times each week, the

> Groshong remains without problems for me.

[Guest guest]

In a message dated 1/2/00 3:11:13 PM Eastern Standard Time,

Jules06032@... writes:

<< I am just wondering if this is at all normal? >>

no it is not normal...problems have been reported with picc line insertion,

but your experience seems to rate as the worst I have heard...

I kinda feel guilty to tell you my husband and I both had ours done and had

an easier time of it....my husband did need a 2nd stick...but for both of us

it was in within a matter of minutes..in the Dr's office by an R.N., and she

did it alone...no help needed....no meds needed......

who the hell did this insertion? Was it someone with experience?? I have to

also say I would not feel comfortable keeping it in my arm if it is as

swollen as you say...(hard to imagine how severe...since all I have to go on

is your description...I would take a tape measure (if you haven't

already...and take measurements (circumference) of various places along your

arm...(write them down...like upper shoulder, picc insertion site...and wrist)

hopefully your swelling will not get any worse.....and will subside...but it

is easier to validate/explain swelling when you have it in measurements...

Are you taking ANYTHING for the pain?? Often the vein will spasm and cause

pain...so ibuprofin/nuprin every 4 hours can do a lot to help with pain as it

will calm down the inflammation and the spasms...(take it with food) even if

the dr. gave you some sort of pain pills...make sure you go for an

anti-inflammatory ...it actually can do more for the pain then codeine

would.....

even if you do not want to take anything, you should...because the vein has

to calm itself down ...as it sees the catheter as a foreign object (which it

is) and is spasming in an attempt to eject it....

my IV nurse told me to apply heat, but being a nurse myself....I avoided

heat...because I was afraid if I did develop a blood clot...the heat could

cause it to dislodge and by moving around in the body possible do a lot more

damage...

if the arm is a lot warmer to the touch...than the other...that is also

important to call the doctor over.....since there is so much swelling...also

make sure your fingers are warm and have good circulation....if you go numb

or tingle only in the iv hand...you gotta be careful and figure out

why.....this swelling is something you definitely have to keep an eye

on....and if you have ANY doubts, call the doctor...call the nurse......

good luck,,,,,,keep us posted.....

[Guest guest]

In a message dated 1/2/100 4:11:10 PM EDT, Jules06032@... writes:

<< Well, the procedure took over 2 hours. They had to

" shave down " my veins, inject me with dye, hook up another IV in my wrist,

trying to jam the picc line in and not in the vein, then when they got the

picc line in my veins were spasming, etc.... Then after it all- I have

about 10 sutures in my arm, 4 in the catheter site and I am in so much pain.

One shot of novacaine when they were suturing- >>

OH JULIE , WHAT A NIGHTMARE !!!!

you poor girl. As far as I know that is DEFINITELY NOT NORMAL !!! My line

only took 15 and I was done. I don't understand why they had to inject you

with dye?? and to have 10 sutures???? WOW.Thats terrible ! Hopefully warm

compresses will help the pain and swelling. I've had four Hickman Catheters

already .. I have been very unluckly with picc lines in the past . Thak God,

the last try worked. But the nurses that tried to get my picclinein

previously would try to get the line in and if it didn't work after the

second try they'd quit. They never tried to " JAM " the piccline in.Jamming

anything in your arm just doesn't sound right. What did your doctor have to

say about all of that ? I'm really curious abt that . Try to give your arm as

much rest as you can. I'm so sorry you had to go through so much .

{{{{{{JULIE}}}}}}

Please let us know how you make out .

hugs

diana

[Guest guest]

My lord, I certainly didn't have to go through anything like that. My PICC

installation took about 1/2 hour. Novacaine, 3 stitches, x-ray to check

position, that's it. It hurt mildly for a couple of days and then wasn't

much of a problem at all. The thread from the stitches poked my arm some and

the nurse changed the position of the line to make it more comfortable.

Sounds to me that either a) you had difficult veins for the procedure or

the staff were incompetent/inexperienced. Hope it heals up soon.

beth

infected w/ Bb in 1984 in California

Undiagnosed bullseye rash

Low grade symptoms through 98

Late neuro symptoms 1/99

Diagnosed 8/99

No ELISA, Western Blot equivocal w/ 4 out of 5 Bb specific bands positive

or equivocal indicative of OLD infection

Abx's: 6 wks oral doxy, 13 wks IV Rocephin, Rocephin w/ Flagyl 1500 mg.

Currently 1000 Flagyl w/ 500 Zithromax

Live in San Francisco

[Guest guest]

Dear Jules & Other Members,

It's only normal if the Lyme has caused damage

to your veins or some other illness. I was so

against another Picc line after I ended up all

bloodied from home health RN trying to get one

in and eventually put one in, but don't think

it was ever right as I started swelling in upper

body down to bottom or ribs about 12 hours after

receiving the 500 ml fluid and antibiotics.

The Picc line did not stay in very long, it just

really spit itself out of my vein! So, went with

opening new vein just about every treatment as my

veins were shot and one bag of 500 ml fluid with

abx was about all the vein could handle.

Eventually, I had a Groshong catheter put in my

collar bone area and exits my chest, much much

better. I had not wanted a foreign object in my

chest but the nurse we liked the best told us the

Groshong was a " closed " system until opened with a

syringe of saline, and less likely to get infected.

When the nurses were having to stick me 3-4 times

and I saw it was bothering them more than me, I

tried to find someone in radiology who would fix

Picc line in, but no one would. My only choice

left was to start on legs and doctor did not want

that at all or to see surgeon about Groshong.

I had the Groshong catheter put in as an outpatient

and there was no difficulty. Only problem is that I

am short, so the exit for the dual lines is just above

end of top of breast. Not the best place in the world

but guess where the surgeon felt it was better coming

out. I've had it in 6 mo & and plan to keep it as long

as I can, even if I cannot get more infusions anytime

soon. As long as the area is cleaned and dressed and

the two tubes flushed a couple of times each week, the

Groshong remains without problems for me.

My doctors will not use one of the lines designated for

drawing blood for labs because apparently the blood

dries so fast and is much more likely to cause an infection

that cold be serious, so they draw the blood the old fashioned

way, from my puny veins. I do not mind the sticks to get

the blood for labs, but my veins have become so fragile that

they cannot draw exactly " normally " . The nurse, who is very

good, draws blood into a large syringe becuse if they stick

the vacumm tube on once the vein is opened then it collapses.

Very smart of the nurse to do it this way I think!

I did not have any large vein in my left arm for them to

try to put a Picc line in, but they tried anyway, so I

do know what you mean about the problems. Since nurse

independently of surgeon told me the Groshong was the

best route to go, I figured it would be okay and it has

been problem free (knocking wood as I type)!

Again, if you have not ever had the infusions before,

let me encourage you to go to 500 ml fluid if you find

you are herxing too bad. It certainly helped me to be

able to tolerate the infusions, and I believe possibly

I might not have felt the benefit I did as soon as I did

if not receiving in 500 ml bags of solution to reduce

the herxing. I would have keyed on the herxing and or

possibly not been aware of the subtle changes to the good.

I believe once you and your doctor can find the right

dose and kind of abx for you to receive, that then is

when you will have the greatest changes for the good.

I am just sorry I didn't get to stay on the infusion

longer as I honestly believe I could have gone in remission

or the infection gone dormant.

It didn't happen and I believe because stopped too soon

that the betterment I had attained started reverting back

about 4-6 wks following the infusions being stopped. I was

in serious pain when the betterment stopped. But, I am

also one of the people who present with pain being prominent

as well as arthritis and neurological problems, and would

expect the pain to come back with a roar if it didn't stop

altogether.

I hope and pray others will be able to experience the infusions

beyond 4 weeks in the future, but with all that's going on it

seems to be in question. Again, I will state we MUST do as

much as individually and collectively possible to free the

doctors from the bullies who want to ruin them for being

the compassionate physician's they are. Plus, we must find a

way to get the non Lyme public involved in our outcry for

justice and for treatment because unless and until they are as

outraged as we and or our families and friends are, nothing

is going to change.

Case in point, not to get into politics (please), but remember

how out of touch President Bush seemed to be when doing some

shopping just before the election? He was amazed at the scanner

technology, and the media picked up on that and while not saying

he was " out of touch " with the common people, it was inferred,

and Bush came off looking like a spoiled rich man who had no

clue how the common people lived and extrapolating that, no

clue how to be the president for a second term for anyone but

the rich. Bush did not get re-elected as we all know.

It was subtle, but it worked.

His son, caught off guard by the reporter's questions, came

down in his numbers in the polls. These are not accidents, they

are planned maneuver's by the media or media with personal

agendas. The reporters in our country in the last few

decades have become more and more " stories themselves " and

what passes for news these days, is a far cry from the impartial

news reporting of the past.

So, just this kind of influence for or against the Lyme doctors

could get them hung out to dry and their licenses revoked, and

the opposite is true too. If we can get everyone we know to

send letters to the media and faxes, protesting the treatment

of compassionate doctors, who have not violated any laws or

guidelines but have treated patients to the best of their

concern and abilities when the infection, determined by the

clinical diagnosis of the physician's, stayed in spite of normal

doses of antibiotics.

Please correct me if I'm wrong, but it seems that the American

Academy of Family Physician's treatment protocol was adopted

in the 11th hour, and seemingly so they could get these physicians

they are judging now. If they succeed in taking out Dr. B. as

well as the other 16 as Dr. O has already lost his license, the

the whole Lyme community at large is in deep kemchee!

Sorry, I'm rambling again.......

Wishing us all health and freedom from pain,

both physical and emotional - Sanda

BearyPrety@... wrote:

>

> > > I've had four Hickman Catheters

> already .. I have been very unluckly with picc lines in the past . Thak God,

> the last try worked. But the nurses that tried to get my picclinein

> previously would try to get the line in and if it didn't work after the

> second try they'd quit. They never tried to " JAM " the piccline in.Jamming

> anything in your arm just doesn't sound right.

[Guest guest]

julie.....in my experiance what u went thru is not normal.......my picc line

was inserted in my doctors office by the nurse from the infusion co. and i

then did my first rocephin " ball " ( pump)......all went smoothly and took

about 1/2 hour,,,, the feeling was wierd and i DID EXPERIANCE VEIN PULSING

WHICH I HAVE FOUND IS NORMAL TO ALL... maybe u have tough or small veins

......personally if i was the doc or whoever installing it.....and i had that

much problem i would have dicussed and considered a chest port.....my

picc.....did not cause me any discomfort and for 12 weeks worked great( but

the rocephin did nothing for me) as i am totally disabled from lyme i did not

work then or now.....however i was able to do things ......mainly the biggest

problem was keeping the area dry while showering.....and some minor

itching.....th bruise sounds like blood released under the skin while they

struggled to insert ur picc.....if i can help u more do not hesitate to ask

Reid