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Hello everyone,
I take mino 2x a day everyday. This is my 15th week (almost 4 mo's) since I started the mino and i went back to see my AP doc and he wants to start me on Clindy IV 's and he said i have to get a “pick line” in my chest or arm and he explained what it is but honestly Im soooo scared! Does anyone else have a “pick line”? Does it hurt? He said its easier than getting pricked by a needle each time and explained it needs to go to a larger vein. What's better getting it in the chest or arm because apparently if you get it in the arm he said they have a longer tube in your vein to go the distance to your chest vs. just getting it in your chest and having a shorter distance. I cant sleep, I wake up cyring in the middle of the night because I dont know what to expect. Please if anyone can give me any advice, now its greatly needed.
thank you
Hi Rebecca,
My hubby was dx w /SD Aug 06 – has been on AP for 20 months. First, his first 4-5 months on AP he was worse instead of better. Around 5-6 month he started noticing improvements. He was on mino 200mg/day every day for the first 6 months, then added the 5 days of IVs, 2/day. Then resumed the mino at a pulsed dose MWF 200 mg/day. This worked really well for him. The nurse put in a 'port' or a pic, don't know if it is exactly what you are talking about – in his arm – so that he didn't have to keep getting re-stuck – he didn't have a problem with it – don't know much about chest one or any other details of it. It didn't bother him – following his 5 day thing, he resumed booster IVs 2/day once a month for awhile – now does them periodically and also still on Mino MWF. Did you read the Scleroderma book yet – Scleroderma – a Proven Therapy that can Save your Life? It is a must read if you haven't – it will give you much information and much hope and optimism. Good luck to you – there are a lot of people on this board who have had all sorts of eexperiences with IVs, etc. that may have more info for you. Things will get better!
Rebecca, just wanted to send some support your way. Although I haven't had IVs or a pic line, I think most people would feel as you do, as well :crying:…a very normal reaction.
Although there isn't much I can offer to reassure you from personal experience, a number of chronic Lyme patients must have a pic line inserted and have it in place for long periods of time while they have continuous IVs. The convenience of this is apparent, because they can carry on with their lives, their IV bags in a pouch, and hook it up wherever they are…work, home, etc. It just seems to become the new “norm” for a while and, from what I've read on Lyme bulletin boards, they seem to get used to it okay.
Hang in there, Rebecca….sounds like you have great doc who is willing to go all out to get you well again…the rough part is toughing it out until then. You're in my thoughts.
Peace, Maz
THANKS MAZ AND GOOD WIFE I REALLY DO APPRECIATE YOUR RESPONSES AND MAKES ME FEEL BETTER. ONE MORE QUESTION DOES IT HURT?
Rebecca,
I had a pic line in my hand in December. I was terrified beforehand. The nurses put a hot moist blanket and wrapped it in saran wrap for about 20 minutes before inserting the pic line. It made my veins look huge! It also made it go really well. The only nuisance was getting a shower because it was on the back of my hand. When they removed it after 5 days, I had NO mark at all following it.
For me the key to getting a needle prick of any kind is good distraction and let the nurse pick the vein they are confident with. The moist heat is probably another trick to add in here, that really helped!
Hang in there!
Michele
PS. It did not hurt after the initial stick, but was a bit cumbersome due to the location. The initial stick wasn't bad at all. In fact, all I remember is being relieved that it wasn't as bad as I had feared.
What about using an emla patch on your arm about an hour or so before the IV's. When my wife had her chemo treatments and IVIG's they really helped with the pain.
Check with your pharmacy.
-Jim T.
Rebecca,
I myself did not have a pick line, but my two week old preemie daughter did and she did great!! It's easier then the million sticks they need to do otherwise! She was only 1lb 13 oz and handled it if that helps:D
hugs
wendi
Hey Rebecca,
Sorry you're having a rough time. You may want to send Annie from Hawaii a PM and inquire about her experience. She's improving from a nasty case of SD and I know she had a port in her chest at one time. Not sure if that's what your doc had in mind. Can't remember who reported this, but it was someone with SD, that you shouldn't leave them in too long because they scar up quickly with collagen and are harder to remove. The insertion and removal of the port is a surgical procedure.
Good luck to you…..kim
ok Wendi if your lil girl could handle it then I will too 🙂 I am just so freaked out just because i know how much it hurts me to just get blood drawn that Im just terrified.
I wonder why he can't just do an IV lock instead of a pic line…. maybe because sometimes the locks don't last the entire week (although mostly they do).
I have never had a pic line but my dad had several over the years and it wasn't an awful deal for him. I think its sounds way more scary than it actually is. You are lucky to have a doc ready to give you the IVs, I think most of us would be willing to take any kind of a stick or line in order to get the IVs. You'll be fine. 🙂 Keep us posted!
Rebecca,
My husband has had a groshong central line for about 8 months now. He really dreaded having it done but it turned out to not be a big deal at all. Also, what a relief that he doesn't have to be poked constantly as his veins aren't very good and he is much more sensitive to pain than he was before he became sick.
Once you have it done, you'll wonder what you were so worried about. It sounds much worse than it is. Embrace it as one more step in the right direction to getting better.
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