arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Hi Everyone,
I just wanted to let you all know that I got a call from my infusion company a few hours ago and my insurance company has approved the Primaxin for me! I was pretty shocked because the last I knew, the insurance company had no record of the request for approval being made (when we called the insurance company on Friday) but apparently that was because of a neglegent person who was handling my case and then left the company without transferring my case to anyone else!
But, all that isn't important, because I'm getting the antibiotics covered without having to fight for months! I'm just shocked - this is the fastest we've ever had anything approved.
So, they're sending out my supplies this evening and a nurse is supposed to be coming sometime tonight to oversee my first infusion and then I'm off and running with it! So, let the juggling act of infusing every 8 hours begin!
I started this med last wed. night. Keep in touch and let me know how you are doing. It is quite the chore doing it every 8 hours. I can't even get a full night's sleep and I'm working full-time so I have to infuse at work every day, but I guess you just put one foot in front of the other and be thankful for what you have.
-------------------- jloisu Posts: 197 | From Seeing Lyme Green in Iowa | Registered: Jun 2005
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Thank you all for your congratulations! I'm still awaiting the arrival of my first shipment of supplies for the Primaxin and my nurse is awaiting a call from me when the shipment does get here so she can come and oversee the first dose. Hopefully it will all get done soon so I'm not just waiting on pins and needles about whether it will all get done today!
jloisu, I'm a bit worried about juggling the 8 hour dosing but I'm tentatively planning on 7am - 3pm - 11pm. I'll have to juggle it every once in a while (mostly the afternoon dose) but that schedule will work the best for me, I think. I'm with you on the sleep thing - I usually sleep at least 9 hours and usually closer to 10 hours a night but I'm sure I'll adjust. That morning dose may be pushed back sometimes but I can probably wake up long enough to hook up and then wake up again to unhook when I'm done. I'm also going to have to infuse at work on the days I work (usually 1-2 days a week) because I work from 1-5. My boss is fine with this, thankfully. I don't know what I'd do without an understanding boss! (I work in the office of a small art gallery so people who come in will see me all hooked up - but I don't care if they don't care!)
I'll be sure to let you all know how it goes when I've gotten it under my belt a bit.
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
The shipment finally got here and so did my nurse and the first dose went relatively alright, except that I'm feeling pretty yucky from it - nausea and worse headache, but that usually happens with me with IV antibiotics. But the thought of doing it three times a day is kind of a lot to handle right now. I'll see how it goes over the next few weeks 'til my LLMD appointment and if I have a really rough time handling the three times a day I'll see if he wants to cut it back. I should do a little better with the nausea if I'm better about taking my Zofran before the infusion.
Glad it's finally started, though! And it's so nice that the Primaxin doesn't have to be refrigerated because it's not pre-mixed! My little fridge gets a break from meds and I can fill it up more with drinks.
I'll try to keep you all updated on how the Primaxin goes!
posted
Good Luck Annie!! I did Primaxin back in 1999 for 2 years straight (not planned but it was a slow ramp up to the full dose because I was so sick at the time)...it was the med that finally put me over the top after having been ill for four years prior to that (did Rocephin and numerous orals). Unfortunately, I have recently relapsed and trying some oral combos again before going back to IV. I actually had a miracle PICC line in my arm that lasted that long as well. So be patient with it and rest when you can. I was unable to work so the dosing schedule was not as difficult for me other than constantly being tied to a pole (i mixed the Primaxin as I did each dose) and having to set an alarm for the late night dose as I often fell asleep while doing it. So keep the faith and hope everything goes really well for you.
Posts: 14 | From Bergen County, NJ | Registered: Jul 2005
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How do you infuse it? I spoke to the representative at the LDA conference for the ball pump method of infusing. It looked so easy! Have you ever used it? It is preset to infuse at the rate the doctor prescribes. There are two sizes the larger being the size of a tennis ball. It hooks up just like a bag and goes in a little black fanny pack. I am thinking my daughter could go anywhere if we got this, even asleep. The rep said if you do not unhook it then you may get a little blood back in the line but not serious. I have heard of kids who have so much freedom with these balls, and am considering seeing if we should switch.
Posts: 55 | From USA | Registered: Sep 2005
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lyme_suz
Unregistered
posted
Hope,
Those pumpy balls are awesome. So much better than IV pole.
We used them until our insurance ran out and then found them at least 2x as expensive, so we went back.
At least we are in American and have medicine.
IP: Logged |
lyme_suz
Unregistered
posted
Hope,
Those pumpy balls are awesome. So much better than IV pole.
We used them until our insurance ran out and then found them at least 2x as expensive, so we went back.
At least we are in America and have medicine.
We insisted and insurance did ok for first 4 wks.
Is very nice for kids, although mine were not moving around all that much.
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
The pumps aren't available for Primaxin because the Primaxin isn't pre-mixed - it has to be mixed just before it's infused. So, being attached to a pole is the only way to infuse it! But, I'm not complaining, I'm just so grateful to be getting the medicine covered at all!
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