Re: Re: Remicade by ports- good idea??

[Guest guest]

Thanks Tawny. I really appreciate the comments and support.

> Hi ,

>

> I am currently on the Humira weekly, and so far it's working fairly

> well. I inject myself, and that is something to get use to. I have

> talked to others taking the Enbrel, Remicade, and I have heard good

> things. You are not over reacting it's hard enough, without extra

> worry. I don't know what to tell you, it's something to really think

> about. Just know that your in my prayers, and I will be thinking of

> you. God Bless You, Tawny

>

>

>

>

>

>

>

>

>

> > Have been having success with Remicade but not with starting IV's.

> Yesterday it took four pokes and that is a good day...some veins are

> scarred and others hard to find because of among other things...10

> years or so of prednisone and about a year and a half of IV

> infusions. Anyway yesterday they mentioned talking to my doctor about

> using a port. It scares the heck out of me... On the one hand, I

> understand it would be less painful longterm and certainly more

> convenient for both of us. As it is, I don't like the thought of

> pushing toxins in my bod every eight weeks let alone...now pushing

> them into my vena cava. I could see it if it meant living or dying

> and see the use with chemo BUT... . The nurse explained it is often

> done with Remicade and that it would allow the veins to rest and heal

> ( can that happen?) and then it would be less dangerous if I were to

> be hospitalized for something else on an emergency basis. Does this

> make sense.

> >

> > Am I overreacting? My life is pretty overwhelming right now as it

> is...this is not helping. I was so discouraged yesterday when I went

> home...I was glad my mom had not tagged along because I know it would

> have upset her.

> >

> > Before I reject the idea out of hand, maybe some more rational

> minds could make some suggestions here. Right now I am thinking of

> asking for another TNF drug - like Enbrel or Humira.

> >

> >

>

>

>

>

>

[Guest guest]

Elaine- Thanks for the suggestion regarding the pic line. I had to have blood

testing regarding pro times a few years back when I was on coumadin. I think a

pic line was used. I plan on asking about this alternative too. Thanks again.

Hugs,

> ,

> I don't have a port although it has been suggested to me also.

> However, I do have a PIC line. I am currently needing to take IV meds

> four times a day. The only real care a PIC line requires on a daily

> basis is to be flushed which is a very simple task.

>

> I have a home health nurse that does blood draws through my PIC twice

> a week. She also changes the PIC line dressing once a week. I would

> not be able to do the dressing changes on my own. My pic line is on

> the inside of my upper arm.

>

> A port requires " less maintenance " and I haven't ruled that out

> completely. I'm just a bit hesitant because I'm an extremely high

> surgical risk. For now the PIC line serves me well. Has a pic line

> been suggested to you?

>

> Good luck in making your decision. If you have any further questions

> of me, please feel free to ask. I do have a very difficult time

> reading all of the posts each day so would appreciate your sending to

> my private email addy as well as the list so I don't miss your

> questions.

>

> Elaine in Las Vegas

>

>

>

>

>

>

> > Have been having success with Remicade but not with starting IV's.

> Yesterday it took four pokes and that is a good day...some veins are

> scarred and others hard to find because of among other things...10

> years or so of prednisone and about a year and a half of IV

> infusions. Anyway yesterday they mentioned talking to my doctor about

> using a port. It scares the heck out of me... On the one hand, I

> understand it would be less painful longterm and certainly more

> convenient for both of us. As it is, I don't like the thought of

> pushing toxins in my bod every eight weeks let alone...now pushing

> them into my vena cava. I could see it if it meant living or dying

> and see the use with chemo BUT... . The nurse explained it is often

> done with Remicade and that it would allow the veins to rest and heal

> ( can that happen?) and then it would be less dangerous if I were to

> be hospitalized for something else on an emergency basis. Does this

> make sense.

> >

> > Am I overreacting? My life is pretty overwhelming right now as it

> is...this is not helping. I was so discouraged yesterday when I went

> home...I was glad my mom had not tagged along because I know it would

> have upset her.

> >

> > Before I reject the idea out of hand, maybe some more rational

> minds could make some suggestions here. Right now I am thinking of

> asking for another TNF drug - like Enbrel or Humira.

> >

> >

>

>

>

>

>

[Guest guest]

Hi ,

I have had all three modalities. I have had several central lies, which is

actually a rather short term solution and if you are on Coumdin, then the

placement of the catheter must

be in the groin, because if you start to hemorrhage, you don't want that to

occur near the head, as that woud be catastrophe. Instead they put the shunt

in my lower groin and they sustained quite a bit of action.

I currently have an infusaport and,knock on wood, so far so good. They used

it for anesthesia and for blood. They say that this port can stay in for a

lifetime.

Hope that this helps and that you start felling a bit better. Thanks again

for all the

information regarding SSI as I just approved after 3-4 years!! My ortho s a

little sad that they did not use all the " good " information, but, hey, they

got the job done!!!

Gentle, tender, angel hugs,

Debs in FL

[Guest guest]

In a message dated 16/04/2004 15:14:44 Central Standard Time,

k.j.choate@... writes:

> Elaine- Thanks for the suggestion regarding the pic line. I had to have

> blood testing regarding pro times a few years back when I was on coumadin. I

> think a pic line was used. I plan on asking about this alternative too. Thanks

> again.

>

> Hugs,

>

-

If you are going to be on IV meds for more than a few months, the port is

better than the PICC every time. The PICC also goes into the top of your heart

if it is placed correctly, doesn't last as long, and is a portal in your skin

for infection whether you are using it or not. The port is under the skin,

when not in use no opening for entry of infection, lasts for years, and doesn't

require special care due to sticking out of you like a PICC does. It all

depends on the length of time you are looking at, and whether you will need

intermittent or daily use. Cary

[Guest guest]

Thanks Debs. Glad your saga has had a few high points and that your sense of

humor stays in tact. I am sure Tess can't wait to meet the Cabana boys. I have

been off coumadin for a long time so that is not a problem. I saw Dr. Penput

today and she says that the port is a last ditch method. She has had too many

patients develop infections - and as it is placed in the heart - that is not

where she wants infection. I am scheduled for a bunch of fasting bloodwork to

see if everything ok. Have been on Remicade for about 11/2 years. She wants to

make sure it isn't developing into lupus. Face is a little rashy. If they can't

infuse by IV - she would like to try Humira and see if that would work as well.

It is given by Subq injection- and as I did that with heparin after surgery I

think I could handle the injections. We'll see - the next Remicade is scheduled

for June 8. She wants done by IV. She told me to ask for a different nurse -

easier said than done...I mean who wants to anger someone with needles. LOL. You

just keep on getting better and better Sweetie - OK?

Hugs,

> Hi ,

>

> I have had all three modalities. I have had several central lies, which is

> actually a rather short term solution and if you are on Coumdin, then the

> placement of the catheter must

> be in the groin, because if you start to hemorrhage, you don't want that to

> occur near the head, as that woud be catastrophe. Instead they put the shunt

> in my lower groin and they sustained quite a bit of action.

>

> I currently have an infusaport and,knock on wood, so far so good. They used

> it for anesthesia and for blood. They say that this port can stay in for a

> lifetime.

>

> Hope that this helps and that you start felling a bit better. Thanks again

> for all the

> information regarding SSI as I just approved after 3-4 years!! My ortho s a

> little sad that they did not use all the " good " information, but, hey, they

> got the job done!!!

>

> Gentle, tender, angel hugs,

>

>

>

> Debs in FL

>

>

>