feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Hello Friends,
Had my line placed this morning in the Pain and Procedure Dept. of the Hospital.
It was a breze! X-ray folow up looked fine. I didn't feel a thing except for the initial poke. I can't believe how tiny (thin) the line actually is.
I have a Per-Q-Cath that was initially developed for immuno-suppressed premature infants. Because of it's success in this delicate area of medicine it is now used in all patient categories.
Still haven't received my first dose of Rocephin yet because I am in such a rural area no homecare nurse is equipped to give first dose (shock) issues.
So, I just received another call saying that my PCP here has agreed to give first dose tomorrow in her office. Now I am just waiting for the drugs to arrive.
I will be dosing 2 grams every 12 hours 7 days a week. Does this seem right?
Anyways, that's it for now. Except I'm going back on Paxil after a year hiatus because it has relly helped with my anxiety in the past.
Since diagnosis of vasculitis my anxiety is OUT OF CONTROL. BP today was 152/105... not good. I am athletic and am used to a reading of 102/68 P=48-60. Today my pulse was 101! Yikes, What a freak!
Onward>>>>>>>>>> Rhonda
Posts: 3975 | From usa | Registered: Aug 2007
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Cobweb
Unregistered
posted
I only do 4 days of infusions-2Xday. 3 days off.
on Fri./ Sat./Sun I just do Heparin flushes.
I also take a baby aspirin each day to prevent blood clots.
Also I take Actigall for gallstones, because Rocehin can give you trouble with your gallbladder.
posted
You can get a BathGuard sleeve to cover your arm for showering. I got one at the hospital pharmacy. It keeps your arm dry and showering is not a problem. I heard you can also order this sleeve or one like it on line. I wish you good luck with the IV therapy!
posted
Started my Rocephin yesterday, first day. He is splitting it 1 gm in am and 1 gm in afternoon for 5 days a week, 2 days off.
Keep us posted!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Thank You Ladies,
Slept really good last night for the first time in awhile.....think that it has to do with my stress level going down.
I am going to look for one of those arm covers at the medical supply store.
Huuummmmm, wonder why I'm infusing 7 days? I'll have to ask.
Back to the Pain and Procedure center today at 1:00 for first treatment.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Sounds great*)!*)! !*)!*)!*)!*)*!)!*Have your doctor show you how to dose yourself- it is easy!*!!! My two year old infused me all the time - it actually made her feel a part of it all and no longer freaked out by it- was good for her- she loved doing it!!! And it gave me the ability to say in all honesty- even a two year old can do it*)!*)!*)! Bestest wishes, Sarah p.s. and learn how to flush your line!!! Easy, too*!)!! Am So glad it went well*)!!!!!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Sarah,
I will be infusing at home. Just having difficulty with the first treatment thing (alllergic reaction)possibility.
The home health nurses in this rural part of Michigan say that they are not equipped to deal with this.
So today I will go back to the hospital and have the WONDERFUL nurses there give me my first treatment and change my dressing. Tomorrow the home health nurse will come out to teach me the protocol.
Personally, I would rather have the nurses in the Pain and Procedure Dept. at the Hospital do my weekly dressing change. They were awesome....although, I have not met the home health nurses yet.....but Cobby truly makes me wonder!
I'm keeping positive!
Rhonda
p.s. A two-year old infusing you! You are amazing!
Posts: 3975 | From usa | Registered: Aug 2007
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daise
Unregistered
posted
Think of it this way: You're getting "PICC line dressing change" taught to a home healthcare nurse in your area of upper Michigan.
That ought to help someone else with Lyme!
A number of my nurses brought a nurse-in-PICC-line-training with them and had them train on me. There is a lot to know about a PICC.
You might ask at the place in town--the pain center--for company literature on PICC line dressing changes.
That's what I'd do in your situation. Or search the Internet under your PICC line manufacturers name.
Maybe your home health care nurse will be glad you did--for her sake, learning something new.
posted
hey -- just wanted you to know that there was someone else who infused every day. And that person was me.
3 months every day 2gms. at once.
I had a midline in my elbow. It lasted, thank goodness.
I bought one of those rubber things to cover my elbow during a bath. It worked better than Saran Wrap which is what my nurse told me to use. That stuff leaked and leaked...
Allie
Posts: 300 | From Northeast | Registered: Dec 2006
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Hi,
Ok, first infusion went great. No reaction. The nurse put on a needle end on the picc and it needed a bubble end so I couldn't do a heparin flush last night.
Back to the hospital this morning for and end change and Hep flush. Home Health will be out between 2-3 this afternoon to teach me how to do all of his myself.
Daise, you positive gal! Always looking at the benefit of any given situation! You remind me of my best friend.
Allie godd to hear someone else did 7 days too. I asked about it and they said that they want to keep a constant ammount of Rocephin in my system.
Not gonna worry HA!
Posts: 3975 | From usa | Registered: Aug 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I infused every day too*)!!! My Visting Nurse taught me how to infuse and how to do dressing changes but money was an issue with us- keeping the site sterile is uber-important*)!!!
I used to get this coolness on the roof of my mouth whenever I infused Rocephin, this physical reaction, not bad, just this sensation of coolness on the roof of my mouth*)!*)!!!!!!!!!!
Ropcehin saved me, I love that stuff!!! Locally it is one of the only things I have seen bring people full remission who have been sick for years*)!*)!*)! (But always transition to orals & then off even if apparently symptom free otehrwise people can crash!)
it doesn't work for everyone and for months I didn't think it was working for me, but then it did and I am so grateful. You are doing great ff!!! You sound very capable*)!*)*!! Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
FeelFit- your dose is right I believe. I have been getting 2g once a day every day. The break is more common with the 2g twice a day dose. Otherwise, a break may be to minimize herxes perhaps but my LLMD prescribed your dose, I had no problems for near 3 weeks. I am also taking doxy and a ton of other stuff on top of that. Good luck!
Posts: 163 | From Cleveland, OH | Registered: Sep 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Desperation,
Do you mean that you have been infusing for three weeks w/o problems, or that you encountered problems at week 3?
Sarah,
Yeah, I've always been a fighter, strong and capable....but a real wussy and worry wart at heart. If anything that can go wrong is mentioned, I think that it is going to be my experience!
I've got to change that thought process, at least work on it.
Thanks Everyone!
Posts: 3975 | From usa | Registered: Aug 2007
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daise
Unregistered
posted
Ya, Feelfit, but you are prepared! Not everyone is. Not everyone is careful. Not everyone is attentive to their program.
I laugh all of the time at your "cautionary Tale".
I'm feeling much better now that I've taken the dive, so to speak,.
Does the baby aspirin help? Did your doc recommend taking it?
[B] The doctor prescribed the baby aspirin for the prevention of clotting.[/ B]
Hey, what do you use to cover your arm while showering? Infusion woman said Press and Seal Saran Wrap....what works for you?
[B]Infusion Nurses are full of Delusion when it comes to using Saran Wrap. That stuff is hard enough to use with two hands available.
I resorted to the plastic sleeves that the newspaper comes in. I slipped one over my arm and secured it with two wide rubber bands at each end. No problems.B]
Best, Rhonda, soon to be Feelfit again!
All of the above is past tense now since my line was pulled last night. Sorry for the delay in answering-but I have been busy having a life-thanks to my picc!
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