Who's had a PIC line?

[kimblebee]

Thanks again everyone. It wouldn't be for a medication I could do at home. It's being done at the hospital and I have to be there for five days for about eight hours at a time.

It's a treatment for my MS and it's a big decision to even do it. It's going to kill my immune system and hopefully the one that regenerates won't attack my brain. That's the way shortened down version and there are obviously a ton of potential risks but I just had my Dr. declare my current meds a fail..for the sixth time. Anyway, enough ranting, thanks for all the replies.

 

[Mrs. Ciz]

Thanks again everyone. It wouldn't be for a medication I could do at home. It's being done at the hospital and I have to be there for five days for about eight hours at a time.

It's a treatment for my MS and it's a big decision to even do it. It's going to kill my immune system and hopefully the one that regenerates won't attack my brain. That's the way shortened down version and there are obviously a ton of potential risks but I just had my Dr. declare my current meds a fail..for the sixth time. Anyway, enough ranting, thanks for all the replies.

We will be praying you through it!

 

[Teresa Pitman]

I am so sorry you are having these struggles with MS. Two of my brothers-in-law and another good friend have MS and I've seen them struggle with different treatments and approaches. Often something that works well for one won't work at all for another. I really hope that this works well for you and you get some relief from your symptoms.

 

[cornflkgrl]

Hope this treatment works for you.

 

[2angelsinheaven]

Our son had to have a PICC put in earlier this year - he got a nasty salmonella infection that caused him to go into septic shock. After 3 days of miserable pokes, the DR suggested that we have a PICC line inserted. Due to his age, it was done in the OR - and I was a nervous wreck. But it was the best decision we could have made.

No more tears, no more frustration (on his part or the poor nurses trying to stick him daily), and after 10 nights we were able to go home with the line in and finished another week of medication at home.

If you're a 'tough stick' and the DR is willing to order a PICC, I'd highly recommend it. It was very easy to care for too - I know you said the medication would be done at the office, but I would assume you'd still have to flush it at home with heparin. The process was simple and only took 2-3 minutes, I think I spent more time washing hands and disposing of the wipes, etc than the actual flush.

I attached a few photos of his PICC, it's super tiny but made a world of difference. Best wishes in your treatment, pixie dust that this medication helps with your MS.

 

[kimblebee]

Our son had to have a PICC put in earlier this year - he got a nasty salmonella infection that caused him to go into septic shock. After 3 days of miserable pokes, the DR suggested that we have a PICC line inserted. Due to his age, it was done in the OR - and I was a nervous wreck. But it was the best decision we could have made.

No more tears, no more frustration (on his part or the poor nurses trying to stick him daily), and after 10 nights we were able to go home with the line in and finished another week of medication at home.

If you're a 'tough stick' and the DR is willing to order a PICC, I'd highly recommend it. It was very easy to care for too - I know you said the medication would be done at the office, but I would assume you'd still have to flush it at home with heparin. The process was simple and only took 2-3 minutes, I think I spent more time washing hands and disposing of the wipes, etc than the actual flush.

I attached a few photos of his PICC, it's super tiny but made a world of difference. Best wishes in your treatment, pixie dust that this medication helps with your MS.

Knowing that there are pancakes involved changes everything...

 

[ronandannette]

Knowing that there are pancakes involved changes everything...

Good luck with the treatment - I've never heard of that one before and I hope it's effective and has the potential to help many. MS is the scourage of the middle-aged Canadian woman...it's practically the first thing doctors look for when you pass a certain age. I've been "worked up" twice due to various maladies but praise the Lord, I've not been diagnosed. Funny that Teresa Pitman mentioned knowing men who've been diagnosed. I can name 5 women (all relatively close to me) right off the top of my head that are living with MS but I don't think I know a single man. It's a tough, scary road and I wish you well.

 

[NotUrsula]

Had one last year that was in for a month. It's normally done on the inside upper surface of your less-dominant arm, which makes getting dressed a major PITA. Clothes won't fit over it if it stays connected to the pump. (You shouldn't have trouble with that if you are getting day infusions, because the pump line will be disconnected when you leave each day; you'll just have the mantles left dangling (normally there are 3, each abt 4-8 inches long), and if you wear a long-sleeve jacket you'll cover them.) Mine was done in my hospital bed by a surgeon, and I had to fight rather a lot to get it paid for. (I was being fed intravenously, so it wasn't for convenience.)

I had trouble with mine because I clot very easily; it was constantly getting clogged up and slow, so I still had to get stuck 3x daily more often than not when my blood work needed to be done.

 

[Happyinwonerland]

I'm an inpatient RN and I deal with PICC lines every day. I just want to make sure you understand that a PICC line is not like a regular IV. It comes with its own set of risks, up to and including death. The PICC line is inserted through your vein and tunnels all the way up to your heart, with the tip just outside it. If they insert id too far, it can stop your heart or send you into a funny rhythm that requires additional treatment. PICC lines also leave you open to blood stream infections. You can develop an air enbolism from improper removal. You can also bleed to death from the procedure.

I'm not trying to scare you, but it is something to consider before getting one put in. Patients usually don't say it hurts, but they way you have to lay while they put it in can get uncomfortable. For a 5 day coirse of treatment it might be worth the risk, but it is definitely something to talk about with your doctor.

 

[Happyinwonerland]

I'm sorry to hear you are struggling with MS. You are in my thoughts.

 

[kimblebee]

I'm sorry to hear you are struggling with MS. You are in my thoughts.

Thanks for this. I'm actually very lucky in that I have the most mild type. I do get attacks and for the first time, have some permanent damage from my latest one but it's nothing I can't deal with. Things could be a lot worse and I know that..but it's frustrating that we can't find anything that's going to work long term for me. I'm already on 'second line' meds, meaning it's more aggressive treatment. To have them fail too is scary. But, as my dad says, I'm on the right side of the grass so I won't give up yet.

 

[gwynne]

Thanks for this. I'm actually very lucky in that I have the most mild type. I do get attacks and for the first time, have some permanent damage from my latest one but it's nothing I can't deal with. Things could be a lot worse and I know that..but it's frustrating that we can't find anything that's going to work long term for me. I'm already on 'second line' meds, meaning it's more aggressive treatment. To have them fail too is scary. But, as my dad says, I'm on the right side of the grass so I won't give up yet.

Hang in there and know that your DIS friends are thinking of you.

I don't know if this will be helpful, you may have already tried this. My dh gets infusions every month or so. He is a very hard stick. We've found that him drinking gatorade in the morning a few hours before his appointment helps. (And odd though it sounds, better than the same amount of water.)
It seems to really make a difference for him. The appointments are long. Finding something that helps get the IV in quicker shortens his stay there- a good thing.
Anyway, just thought I'd pass this on.

 

[MaryLovesPoohBear]

Dad had a PICC. Mom had a central line. They are the same thing, but are placed at different locations.

Dad came home with his, but had to go the hospital infusion center twice a day for his medications. He was able to shower as long as he covered it. It didn't seem to bother him at all. His was in his arm.

Mom was in the hospital. I don't know if they send you home with it. She couldn't shower. And it interfered with her hair and moving her head. It tended to get tangled Her was in her neck.

Both are wonderful, because they don't have to stick you every time they need to give you the medication. They can also do blood tests with the line.

Good luck.

 

[Pea-n-Me]

I have seen a few PICC lines in the neck, but generally, the central lines that are in your neck when you're in the hospital, especially the ICU, are not something you can go home with.

Our son had to have a PICC put in earlier this year - he got a nasty salmonella infection that caused him to go into septic shock. After 3 days of miserable pokes, the DR suggested that we have a PICC line inserted. Due to his age, it was done in the OR - and I was a nervous wreck. But it was the best decision we could have made.

No more tears, no more frustration (on his part or the poor nurses trying to stick him daily), and after 10 nights we were able to go home with the line in and finished another week of medication at home.

If you're a 'tough stick' and the DR is willing to order a PICC, I'd highly recommend it. It was very easy to care for too - I know you said the medication would be done at the office, but I would assume you'd still have to flush it at home with heparin. The process was simple and only took 2-3 minutes, I think I spent more time washing hands and disposing of the wipes, etc than the actual flush.

I attached a few photos of his PICC, it's super tiny but made a world of difference. Best wishes in your treatment, pixie dust that this medication helps with your MS.

Had one last year that was in for a month. It's normally done on the inside upper surface of your less-dominant arm, which makes getting dressed a major PITA. Clothes won't fit over it if it stays connected to the pump. (You shouldn't have trouble with that if you are getting day infusions, because the pump line will be disconnected when you leave each day; you'll just have the mantles left dangling (normally there are 3, each abt 4-8 inches long), and if you wear a long-sleeve jacket you'll cover them.) Mine was done in my hospital bed by a surgeon, and I had to fight rather a lot to get it paid for. (I was being fed intravenously, so it wasn't for convenience.)

I had trouble with mine because I clot very easily; it was constantly getting clogged up and slow, so I still had to get stuck 3x daily more often than not when my blood work needed to be done.

Poor little guy! Was the source of the salmonella ever found?

I'm an inpatient RN and I deal with PICC lines every day. I just want to make sure you understand that a PICC line is not like a regular IV. It comes with its own set of risks, up to and including death. The PICC line is inserted through your vein and tunnels all the way up to your heart, with the tip just outside it. If they insert id too far, it can stop your heart or send you into a funny rhythm that requires additional treatment. PICC lines also leave you open to blood stream infections. You can develop an air enbolism from improper removal. You can also bleed to death from the procedure.

I'm not trying to scare you, but it is something to consider before getting one put in. Patients usually don't say it hurts, but they way you have to lay while they put it in can get uncomfortable. For a 5 day coirse of treatment it might be worth the risk, but it is definitely something to talk about with your doctor.

Great info! When I got chemo, I became a horrible stick - we could only use one of my arms, I'd become dehydrated AND it was the middle of winter so going to get my infusions I was cold and cold collapses the veins - but I opted not get a line. I'd just seen too many problems in the hospital with lines. Instead I hydrated well before appointments and as soon as I got there they wrapped my arm in a warm towel for a while, which dilates the veins and makes them easier to see and get an IV line into. I'd probably do the same today. YMMV. Good luck whatever you decide, kimblebee. People do have them without problems too.

 

[Kathryn Merteuil]

I have not had one myself, but my ex husband did. One word of advice... it is not a good idea to try to work on it yourself or have an untrained person do any modifications.

My ex had one and it had some kind of "extenders" on there. They said they could be removed, but didn't say how. It didn't take long for him to want rid of those extenders because they were flopping around and bothering him. He told ME to remove them. I was like "no freakin' way, call the home-health nurse to do it". He started yelling at me and cursing me, and was like you can't even do this for me you blah blah blah... He kept badgering me until I finally was like "OK", and I tried to do it myself.

Yes I screwed it up, bad. I don't know what I did wrong, because I did not have any darn clue what I was doing. I know it is not as simple as just unscrewing something. It turned into a huge ordeal. We had to call the home-health nurse in a complete panic to come out and fix whatever it was that I messed up. Then she was like scolding me for being an idiot and trying to work on it myself.... and I was like I told him to call you in the first place. So yea I got yelled at by 2 people that day.

 

[Pea-n-Me]

You don't remove them. Opening it up in any way introduces infection directly into your bloodstream.

 

[LiveYourLife]

Hey @kimblebee: zero experience or advice on a PICC line, but wanted to pop on to tell you that you've got this! You know we're always here for you by way of comic relief and shady shenanigans!

 

[TinkPirateMom]

I had a PICC line so I could receive home infusions during my last pregnancy. It was not painful but there were some issues having it placed. They could not get it placed properly in the first arm they tried so they removed that and tried the other arm. Then I had a chest x-ray to check the placement. I was told it was in too far and the nurse asked me if I could feel it "tickle my heart". I know she was just kidding but I didn't find it funny at the time. They retracted some of the line. The tubing basically hangs out of your arm so I kept a little mesh cover over it. Caring for it was pretty simple. I would flush it and hook myself up to the IV each day without a problem. The skin around it did become infected after several weeks and I had it removed. Removal was simple and painless. A nurse did it at my home. I have scars on both arms from it but they're underneath my upper arm so not really an issue. Even though I had a few problems, I would choose the PICC line again over multiple IV's.

I hope the meds help