Getting A Pic Line Next Week

[tinkerbella]

This morning the doctor decided I needed fluids everyday, 3 liters and I would be able to put a pump in a back pack and go places if needed. I'm so tired right now and the trips and wearing me out. They think I have mito and this will help me till I go into the hospital and have my mito full workup. At that time they will put in a central line portacath. Today I'm left with mixed emotions, as home I'll be with my dog and never have to get up and early and be there the whole day twice a week and spend time arranging the cab again to go back and forth to the hospital. The hospital is where all my supports are. I will miss them all so much. I know it is time to move on, but I'm sad. I love everyone I have worked with over the past 3 1/2 years. Also, I have only a few days to get my room ready to be an infusion clinic. I don't know what I need. Any advice? I have someone who will come in on the weekend and move everything around for me. Thanks for the help?

BellaMia ~

[lieze]

I hope your PIC line insertion goes smoothly for you.

We did home infusions for my husband after a spider bite and it was as easy as pie.

I'm used to having equipment around since I spent so much time working in the nursing home environment so it was second nature to me to flush his line and give his IV's.

We didn't experience any problems and his infection cleared up. ( brown recluse )

I guess my husband and I together have weird health

events. I could personally do without it. : )

As far as equipment I love bed side tables.

They are so handy with the rolling wheels and the way you can get them so close to you.

Other than that I think we just have to take

One day at a time.

Let us know how it goes for you.

[icesktr189]

My mom has had a PICC for years now due to crohn's disease and she LOVES it!

[Dizzysillyak]

I hope this works for you ...

I'm glad to see the success stories concerning a PICC line. I've not had any personal experience with this and I'm not at all familiar with what's the NORM ...

I only heard of this because a close freind of mine got one after her veins kept collapsing from nutritional IV therapy.

I'm not trying to scare you because the success stories may be more prominent than my friends story but she had a piece of her picc line break off and cause a stroke. Or at least that's what she said caused her stoke.

That was about 10 years ago so maybe things are better now ... tc ... d

[Dizzysillyak]

oops I forgot to ask ...

If you don't mind me asking, how did you docs decide that hydrating you on a regular basis was a good idea ? Is this something insurance pays for ? What all is in your IV ?

A lot of us have problems with chronic dehydration despite fluid intake ... thanks ... d

[Rachel]

Hi BellaMia,

I hope that the picc line insertion goes smoothly for you, and I hope that you will be able to feel a little better once you can get IV fluids every day.

You'll really like having a pump in a bag that is portable. This is how I have done my IV fluids, and it is so convenient. You can move around and go places, all while hooked up to your IV! And it's hardly even noticeable.

You mentioned getting your room ready to be an infusion clinic. You might also want to clean out a space in your refrigerator. To use a portable pump you have to have all of the air taken out of the saline bags, and then they have to be stored in the refrigerator.

You probably won't need to make too many changes to your bedroom. You'll just need some space cleared out of a drawer or cabinet so that you can store your supplies. You may want a small basket of things you might need often on your nightstand (hand sanitizer, alcohol swabs, saline flushes). If you will sometimes be using a regular IV pump, not just the portable pump, then you'll need room for an IV pole. You'll probaby want to have a trash can closeby also.

I wish you the best,

Rachel

[handmadebyemy]

I just had a PICC line put in a a few months ago for IV antibiotics for a kidney infection. I had the line in for about a month. I was worried about the procedure but it really was NO BIG DEAL I was lying down the whole time and they just had me get up slowly after the procedure was finished. There are no nerve endings in your veins and the numb the skin where they insert the line so you really don't feel a thing. I asked the dr who put the line in not to use any sort of topical anesthetic that would increase my heart rate and so he used lydocaine and I had no issues. For the infusions, I had a home nurse come once a week to change the dressing and drop off my medicine. She taught my husband how to do the infusions, which he did every day. By the end of the first week I was actually doing the infusions by myself. Although overwhelming at first, it was actually really easy. I hope your PICC line goes smoothly, I'm sure it will!

[tinkerbella]

Thanks everyone, right now they still don't have an appointment for me. It's called a midline. I never heard of that before. I really don't want anything that in view of my sweet grandchildren who like to pull things. Also, how do people wash their dogs, take showers, keep it clean when you live alone? I must say I have been email the nicest member through the meet others program who lives nearby, and I honestly think she is a new angel that God has placed in my life to cheer me up. I just can't believe the magic that goes on here, that when one door closes another one opens full of life offering to help you when they are in the same boat ~ GOD IS GOOD and this is a little piece of HEAVEN to me ~ Thank you everyone, I love you all ~

Oh someone asked how it's gets covered, I assume it's covered due to chronic, severe, debilitating, form of Dysautonomia with all of the other layers that go with it.

Bellamia ~

[icesktr189]

My mom just takes a bath and washes her hair in the sink so her PICC doesnt get wet. She has had it for around two years now and never complain about it. The worst is the having to schedule time for the nurses, but if you are already at home, its no big deal. Just watch out for infection (You WILL know if you get one..it will burn and itch like crazy) She has the portable bad and takes it everywhere with her. My daughter tries to tug on it, but she wraps it with a cloth so the tubes are not showing.

Its really not a big deal to get one very easy procedure and mantience is not too bad. Definently outweighs the risks

[tinkerbella]

I can just see my grand kids now. lol my oldest who is 6 tries to press my lifeline all the time. I'll probably have to have my homemaker wash my hair. that could be a treat. Should be moving forward with all of this, I'm finding I'm caught in emotional mud and grieving everything I love and will be losing. A dip in the ocean, in the pool with the grand kids, should I get strong enough to garden again. I MISS THE FEEL OF MOTHER EARTH ALL OVER ME, I love dancing in the rain. Washing my dog and the bond we have built doing this. I feel so sad, I go back and forth in my mind. There's a ping on game going on in there. I know it's because of all my fatigue and they think I have mito also, but I feel like I'm losing myself or control of myself when I should be looking at this the other way around. Maybe it's because I live alone, who will help me???? Yes, I have a nurse on certain days, that ties me home I want to be free. I feel like I'll never find anyone with all this baggage now, and I'm not settling for the last guy who's begging to come back who can't remember my name and keeps calling me his deceased wife of 10 year's name. I need someone who knows my name and that I'm not taking care of completely. Back to why do you look so good!!!

So, keep posting the tips, they keep me thinking and digesting all of this. God will provide. I feel the love here. Ty all ~

Bellamia ~

[Rachel]

Hi BellaMia,

It will be an adjustment, but I know you'll get through it. It's hard to give things up. Hopefully you will gain more freedom by having the picc line so that it doesn't feel like such a sacrifice.

I have never had a picc line, but on numerous occasions I have had a peripheral IV left in at home for a few days. I was responsible for keeping it clean, flusihing it, starting my IVs, and covering the line for a shower. At first it takes a lot of thought, but soon you can do it without thinking about it. It just comes naturally.

For showers I used Glad Press'n Seal. I wrapped it around the IV site on my forearm, and then I taped the edges and the seam down. I also tried to keep my arm out of the water as much as possible during the shower. To be honest, it was a pain. And that site was in my forearm. I think it would be a little trickier to keep the picc line site out of the water since it will be higher up on your arm. Using a handheld shower nozzle could make it easier to keep the water where you want it so that it doesn't run over the covered picc line site as much.

A friend once told me that she found it easier to deal with a port during showers than a picc line. So if it is really hard with the picc, at least soon you'll be getting a port, so may that will make it easier.

Dani's suggestion to wash your hair in the sink was a good one. If you are able to bend over long enough to do that then that would probably be easier than trying to wash your hair in the shower.

You won't be able to go in a pool or the ocean with the picc line, but you could go in up to your waist, or at least put your feet in. I think gardening would still be a possibility too. You might not want to garden in a tank top, but if you put on a shirt with short sleeves or 3/4 length sleeves then you should still be able to put your hands in the dirt to garden. Just wash them carefully when you get back inside.

Blessings,

Rachel

[tinkerbella]

Thanks Rachel,

I'm so blessed for all my friends like you taking the time to help me through this. It is a midline and not a picline and then will be a central line. All I know is I felt so much better when I held my son this morning for a great big hug. I garden has gone to weeds, my son was trying to encourage me to come out and weed. I can't do it anymore right now...maybe if fluids are on board.. : ) Thank everyone for the H O P E of a brighter tomorrow. ps. my grandkids throw water when no one is looking, I think I taught them. We are fun people!!! LOL! Let the fun begin ~

Bellamia ~

[jbenz1772]

Hi,

Just wondering how everything is going. I just read your post today and hope the PICC went well. I have two perspectives of these. One is that I work in Interventional Radiology and place these on children. Usually very quick and the kids love them because "no more pokes". Second, my son has a heart defect and had a blood infection so needed one for antibiotics to clear up. He was able to do it quickly with no medication and was home that day. As it was between his elbow and shoulder in the inner arm he was able to do everything right up to playing soccer. He even took showers. Best thing is Glad Press n Seal with a rubber band above it and one below it. Works great. Just don't emurse totally in water.

Also one more quick thing. There was a comment about a broken PICC causing a stroke? Unless the patient had a heart defect that caused blood to cross from venous to atrial this can't happen. A PICC (peripherally inserted central catheter) is in a vein. We've had to retrieve broken piccs in our lab. (very rare). But they usually end up pulmonary not in the head. More benefits than risks to a PICC.

Best of luck,

Jennifer

[tinkerbella]

Hello everyone~

What a disaster this has turned out to be ~ The first infusion co was a nightmare. I need to know what to do with all the supplies I'm now charged with and services that were unacceptable. I will not rip them apart here, but please when a company will not contact you before a home procedure, that should have been my FIRST RED FLAG. I don't think I'm allowed to say what happened. But, I had to change companies the next day and now I have all different bags of iv fluids and I don't know what is going to happen insurance wise. I have been really sick, exhausted and kind of out of it in this strange world where I can't believe all that has happened to me.

I thought a midline was in my upper arm and it went in my ac that has been used for 3 1/2 years.... I'm now feeling pain in my upper arm and each day it gets higher.. I could be that I spent an evening at MGH hospital In Boston, with my neuro. I was stressed as I went all alone in my motorized wheelchair. Laugh right out loud if you will, but I can't back up and I can't drive in a straight line. It is a rule going by the transport I use that you back in to the lift. Now, it's kind of like when I can't pronounce a word and someone catches it. Then it only gets worse... I had to take two buses to get there and two back. Get the picture maybe I tensed all of my muscles and the one with the midline was trying to eject it from day one anyway. Well today, I can't stand without my heart rate going out of control. My 8 hour home infusion just ended for today. My nurse, doesn't want me to go to my er and they won't drive me to Boston, or Newton. My cardio comes back tomorrow from vacation. The neuro wanted me to know that there is a 3 month waiting period to get into MGH for what he wanted to do to me. I explained that my dear son was going to lock my bedroom door so I wouldn't accidentally kill myself in the bathroom at night. Also, I had to let him know that I'm not the normal POTS patient. I love this doctor, he has taken over for the person who used to see the adults. So, I believe I'm his first POTS pt. He looked at me and I looked at him and our eyes locked. He sighed, I sighed and I knew he knew as he said I'm so very sorry your life is like this. We talked for a while about how communication is very important, as I felt perhaps my caretakers did not know me as well as I thought they did. That someone else had a life and was going to school with mito while I lived in bed... did my doctor not know that. Did he think I had a life. So everyone at every visit make sure you tell your doctors everything. Even if you told them before, they don't remember. They don't realize we have no life unless you tell them.

Next, I needed a doctor who would take on a possible epilepsy case. "What????? I was saying in my head, no you have it wrong... I just have seizures, it's part of Pots." Then, I needed a Port placement, The Blaird 111 stress test, "No I can't do that again It will kill me, I already had it." "I can't do it again!" I hope he remembers I came back neuro/muscular disease. I wanted to say I can't die right now will you listen to me. My granddaughter is very worried about me right now. YOU can't make me die right now, as it will break her little heart which is really very big for a little girl. I have promised her, I'm not dying right now even though it feels like it right now. Her granddaddy died in May and she is still a mess. My Mngel nurse met with her this past week to answer all of her questions. The first one was, "Is my Nannie going to die?"

So, right now I'm on call for anytime, Monday, Tues, Wed.... so he said I better perform..... so I need so of your prayers please, I don't want another thing wrong with me but you all know how it is here. I need them to catch on video what happens at home. Please pray that they see it and that they give me my meds correctly. Every hospital doesn't want to give me may meds correctly so I get all messed up. The pharmacy won't give it to me as it is more cardizem cd than a horse can take in one day. My mom had trouble waking up from anesthesia, so I worry about that. My grandfather died from anesthesia also on the other side of the family he was also a firefighter and had complications from smoke inhalations.

I also want to tell you all I love you and my computer is dying. I'll try to keep you updated on my ipod. It's kind of hard on the ipod. I know God is with me holding my hand and the Blessed Mother is holding the other., so my hands are full, but a good full ~

Blessings and Love to all ~

Bellamia ~

[tinkerbella]

Well no phone call today, do my cardio must not have been back from vacation to help arrange the admission. So another day thinking and waiting around without much family support ~ OK What do I want when I know what my family is like? That is what my youngest son says to me this morning. So today I'll change my expectations. I'm not going to get anything different. So I'm going to ask my Friends and Fellow Potsies for support and prayers. I'd be lying if I said to you I wasn't scared at all right now. I'd searched seizures here on this forum and it said you don't want to get a dx of epilepsy. It puts all kinds of restrictions on your life. Then the fear factor started creeping in and then I said, "what life????" " Come on do I really have a life?" Seems to me the doctors think I do. Remember to tell them if you live in your BED ~

Last night was really bad with the so called episodes and then this morning they are almost like a dream. Merrily, Merrily, Merrily So is life like a DReAm?

Oh, please pray for me... I'm kind of scared and I can't count on my family, they pray for everyone else, cause they don't think I'm sick!

One does, he sick also, takes one to know one.

Bellamia ~

[hholmes13]

Oh Bellamia I'm so sorry you're going through so much! I don't have much advice. I just wanted to let you know that you're in my thoughts and prayers. I hope you get some good news soon.

Hugs,

Heather

[tinkerbella]

Heather,

That really meant a lot to me tonight. Thank you so much ~ ; ) It's just being heard when we are all alone that makes a difference. Thanks again for the prayers.

Bellamia ~

[Dizzysillyak]

Hi Bellamia,

{{{ HUG }}}

I'm sorry to hear that you're going through this. I don't have any advice either but hopefully you're doctors can get this straightened out.

FWIW tho .. You may want to call whoever got you set up for IV's at home and ask them to come back out and go over your new regime with you. I'm sure they hear this a lot ... tc ... D

[caroline]

Bellamia i am so sorry you have to go through so much. I am thinking of you and will pray for you. Hugs. Caroline

[potsgirl]

Bellamia,

I wrote you on Facebook, so please read what I put there. You know I think you're the best, and I'm sincerely sorry you are having to go through this. I continue to pray for you nightly!