posted
I used to be an RN (in another life!!) so I know that I can mix and infuse drugs..I'm unable to get to an infusion center daily which medicare would pay for so I need a very specific list of auxillary supplies (bags, needles, syringes, dressing) that I can have a doc order from a compounding pharmacy.....
thanks so for your help, deb
Posts: 122 | From richmond, ca, usa | Registered: Feb 2004
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
Hi fellow RN.
I've been mixing and infusing Rocephin for almost 7 months now. Easier as I can get the supplies for a month. My husband does the weekly dressing change.
I get the following for a 5 day on 2 day off schedule: I borrowed an IV pole from the Lions Club (20) D5W 50 or 100cc bags (20) Primary tubings (20) Rocephin 2Gm vials (10) 10cc syringes with 20gauge needles (1) Box of alcohol wipes (30) Prefilled saline flushes (10cc each) (30) Prefilled heparin flushes (5cc) each (4) Central line dressing change kits (4) Extension tubings
If your PICC isn't sutured, you will need (4) stat locks each month
A box of nonsterile latex gloves (1 pair each week)for dressing removal. I also use skin prep to dressing area so I bought a box of those. Packaged like alcohol wipes.
I withdraw 10cc (5cc for each vial of Rocephin) from the D5W bags as opposed to using separate bottles of sterile water for the diluent.
I either mix two bags or four bags at a time. I put them in a foiled bag in the refrigerator to protect from light.
You'll also need a couple of sleeves to cover the line and tubing. For bathing, I now just keep my arm away from the water.
Hope this helps. Good Luck. Let me know if I can help you at all.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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Pocono Lyme
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Member # 5939
posted
Oh I forgot, Gee I must have Lyme or somehting.
Be sure to get a Rx for Actigall. I take 300mg bid.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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How much does it cost per week to do this? Including the Rocephin?
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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Pocono Lyme
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Member # 5939
posted
Hi Jeff,
Yes the Rocephin is definitely working. It took until about the 5 month mark or a little more to see significant improvement and now I'm thinking along the lines of maybe I can get the line pulled in another month or two.
I am/was severe neuro.. So bad cognitively, I had difficulty remembering how to tie my shoes, turn a faucet, get dressed and on and on. Probably about 70 or so symptoms. Down to a handful, but the ones that are disabling. They are even subsiding.
I'm not sure about the cost as thank God, ins. is paying. The slip from the pharmacy read $1736.00 for the Rocephin. I'm not sure about the other items. I would venture to guess about $500/week would be in the ballpark for everything. That's without home health. They charged about $200/visit.
Infuserve America sends everything, at least they did, for I think $50/day
Be Well
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi IV buddy Pocono~
So GLAD to hear that you are improving on the IV rocephin!!
As you know, my picc got pulled due to a fungal infection in the line. And I started falling apart again in 3 weeks.
I've started on IM bicillin LA, and I'm seeing improvements again. I'm grateful!
I'm SO glad to hear that you are doing well. Keep us posted!
Jeff~ The rocephin helped me too....took about 4 1/2 months. (Interesting that it took Pocono about that same amount of time) I was on it for 6 1/2 months before getting it pulled.
The meds, weekly labs, and weekly home nursing visits cost roughly $7000 per month. Insurance covered it (with a LOT of letters on my part.)
Deb~ Make sure you are having routine labs done often for liver function, basic metabolic panel and CBC. My LLMD also required a monthly gall bladder ultrasound and a routine blood culture from the picc line. That caught a subclinical fungal infection, before it got to me (Thank God).
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Pocono - You are a doll - thanks so much for the info - glad to hear it is working for you...
Does the tubing fit directly into the picc or do i need needles for that? And why only 5 days a week???
I will take this list to my primary doc tomorrow - hopefully she will order for me - but more important, hopefully she will understand what I need done and order the picc line insertion - my llmd is out of town and doesn't have privileges at the local hospital....and it will be a royal pain to have someone drive me over for an insertion...but it can be done....
The local VNA said absolutely medicare would not pay for infusion services (maybe it's only for lyme/babs!!). One has to go to the local infusion center where medicare picks up the whole tab...I figure i can probably get myself down there once a week for a dressing change.
Also, if I use VNA they will not use my medicard Part D to pay for rocephin....my AARP plan has a $28. copay until I hit the donut - which will be very fast as costco online lists 2 gm rocephin at around $200 a vial...But once past the donut, the catastrophic part of part D backs back in and they will pay most of the freight...
Anyway, thanks all for your help - I really appreciate it...
Good Health to Us ALL, deb
Posts: 122 | From richmond, ca, usa | Registered: Feb 2004
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
You're very welcome Deb.
The extension tubing and the primary tubing screws in so no needles are necessary there.
The five days on and two days off is, in part, to give the body a break. I hope you can get this straightened out and you get the benefits others have gotten including me.
Hey Timaca I was sad when your line had to be pulled. I'm glad you're improving again. Just wondering though, have you been treated for coinfections? It is my understanding that if one relapses in days or weeks, it is usually a coinfection. Wishing us ALL Well.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hey Pocono~
No, I have not yet been treated for co-infections. I have tested negative for them (which means nothing, I know).
I honestly think I had a rickettsia infection of some kind, for my rash 10 years ago involved palms and soles. AND I had a horrible herx to the doxy, which fights that kind of infection.
I had learned from Dr. B's speech at the lyme conference that if someone relapses very quickly (within days), to suspect a Bartonella type infection.
What is amazing to me, is that I relapsed 3 weeks to the day after stopping the antibiotics. AND it was 3 weeks to the day after getting a steroid shot to my knee that my symptoms started in the first place (steroid shot activated latent lyme in my knee).
For now, we are just trying to balance treating the C. difficile with treating the lyme. Hopefully, we can do both.
Once the C. difficile is GONE, then maybe we can address the lyme more, or begin to think about the co-infections.
Keep in touch!
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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