Topic: Grr! Infusion company frustrations and just feeling like s***!
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Hi Everyone,
Okay, so I'm having some issues with my infusion company about my supplies. I just started back on IV Primaxin last Thursday (a week ago tomorrow) after 9 months off treatment (because my body just couldn't handle much of anything) and 5 weeks of fighting my insurance company to get the IVs set up.
My delivery of supplies last week was fine. I never even talked to the supply coordinator about what I needed in the delivery but they sent out 3 huber needles (I have a port-a-cath), 3 dressing change kits, a separate set of IV tubing for each infusion since I've had trouble using tubing for more than on Primaxin infusion, and all the other supplies I'd need with enough of everything. (The only thing they forgot was my lab-in-a-box to draw my weekly labs but the nurse rectified that.)
So I figured there was no problem in me requesting the supplies I need - extra dressing change kits and huber needles, etc. - and I thought I was all set to get a separate set of tubing for each infusion. I talked to my supply coordinator on Monday about the shipment and asked for 2 huber needles and 2 dressing change kits and all the other regular supplies. Then I got my shipment today...
Not only did the shipment NOT have the two needles and dressing change kits I requested (there was one of each) but I only got 3 sets of tubing whereas I need 21! I called about it and the supply coordinator said, "Oh, I don't know if we're allowed to send out that many, I'll have to check with someone higher up and get back to you." Okay, so she didn't call me back.
Then I went and checked the shipment again and realized there was only one dressing change kit and huber needle so I called the supply coordinator again about an hour and a half ago and she said, "The orders say you only get one needle a week so someone has to contact your doctor to see if he'll let you have more than that. De-accessing and re-accessing more than once a week can increase risk of infection, blah blah blah." Yeah, I know that, I've been caring for my own port-a-cath for a year and a half! And she obviously has no idea what it's like to be limited to one shower a week because of having an accessed port!
I have never had any problem getting whatever supplies I need from this infusion company but I used to have a different supply coordinator (I found out that he died from a heart attack last winter when I started having this new supply coordinator - very sad, he was a really nice guy from what I could tell from our supply phone calls). I spent about a half hour on the phone with this new supply coordinator (Tracey) and she basically couldn't help me out at all!
I have never had my LLMD say that I'm limited to one needle a week. (It does say on the doctor's orders dressing change once a week but I don't believe it was my doctor that really issued those orders, I think it was the infusion company that wrote that and my doctor just signed the order.)
I feel like this infusion company is NOT interested in making my life any easier or more comfortable. They are going to call my LLMD to see if he'll change the orders to give me another needle and dressing change kit a week. They will send me out the extra tubing but the supply coordinator said, "Your insurance won't pay for that many sets of tubing so we're losing money on it. But we'll send them because we made a mistake last week to send so many." Is it just me, or does that not make much sense? They obviously WON'T be losing money because I know they hike up the prices from what they acutally cost so I know it will get covered because of that.
I'm just really frustrated with this supply coordinator. Everyone else at the infusion company has been great - the nurse who came last week to oversee my first infusion was great and said if I need more of anything to just let them know and I'll get it, the admissions person was wonderful and is the one I told about needing the extra tubing and she said it was no problem, the pharmacist is great and has never given me a problem. It's just this stupid supply coordinator!!!
And of course on top of all that frustration, I'm herxing from the Primaxin and feeling like s*** because of that. I'm very shakey and weak and having bad headaches daily again and feeling exhausted and nauseous and just feeling AWFUL so I REALLY don't need to be getting into arguments with people over my supplies!
I'm considering switching to my other infusion company (located in Florida where I get my daily IV hydration from) because I'm very used to them and they are wonderful - give me whatever I need and consider me part of the family since I've been on service with them for about a year and a half (since May 2005). I just don't want to go through having the insurance cover through them but I think in the long run it would make my life easier.
I mostly just needed to vent about all this. But if anyone has any suggestions of how to deal with this, I'd love to hear it. I don't know if calling and complaining about this supply coordinator would help at all but I just really don't want to deal with her anymore! GRRR!!
Thanks for listening. Sorry this is so long, I just had a lot to say, I guess. I need to take a nap and try to regain some strength.
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Annie, I am so sorry that you are having so many problems with supplies..The diseases are enough to worry about without that..Good luck..lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Good evening Miss Annie,
Hopefully by now you have had a nice nap, something yummy to eat, and have regained a bit of strength to move forward in dealing with this problem.
I can relate to infusion mix-ups. They are no fun at all, and actually can be quite frustrating when you can't get what you need, or you are forced to deal with someone new who isn't quite up to speed on your particular issues.
I'm so sorry that you are having these issues on top of herxing. It just isn't fair, is it?
But, I have every confidence in your ability to pull through and make this work out for yourself. Goodness, you are a pro at this by now, and if anyone can do that, you most certainly can!
Weigh the pros and cons of switching to the other company against trying to speak with this new coordinator again. It could be that because she is so new, she is just trying to follow every rule to the max. Perhaps, someone else within the company can step in on your behalf to explain exactly what is needed each week...the nurse?
And if the coordinator does actually require your doc to spell out what is needed in writing...then so be it.
I guess my point here is this... you have too much else to try and deal with besides also trying to get this coordinator to see things your way. So, perhaps, you can meet her halfway, (even though it doesn't seem fair) to make things happen for you!
All my best, Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
I have the perfect solution for you. Why not forget the infusion company and get your own supplies with a doctor's prescription -that way no one can limit your supplies and you will always have enough of everything. I,ve been doing this for long time because I got the same nonsense from my infusion company. They would refuse to send me extra heparin because they said it was too dangerous. The other thing that happened was that one of the medication bags had particles floating in it because the "tech" that mixed the drug cored the vial. That was the last straw and I asked my doctor if I could get my own supplies and he agreed. It was actually cheaper for me because the mark-up from these infusions companies is incredible. They once charged $150.00 for a vial of magnesium sulfate which I got from my pharmacy for $5.00. It may be more work in the beginning but it is a lot less stress. Hope this helps!
Posts: 425 | From NY, United States | Registered: Mar 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Try and get your LLMD to call the idiots and straighten it out.
This is exactly the kind of stuff that really Peee's Off me . Its bad enough dealing with the disease when things are smooth but because of incompetance sucks even more .
Sorry this is happening to you.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Arg, your mailbox is full so the PM I sent you did not go through.
We are working with a company that has been extremely responsive. You probabaly already know them.
Everyone says IV is easy but I find it a pain.
It would have been tons cheaper toget supplies from ouor doctor's pharmacy and do it all ourselves, but I was too worried about infections and sterility. If we have to go another 3 months, I think I will do it myself -- the cost is prohibitive!
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
If you have had enough of that representive I would go over her head and request a new one.
When speaking to her supervisor I would emphasize how sick you are and it is just to hard to have to constantly argue for every little thing you need.
Since you have a "back-up" infusion company, if needed threaten to leave their company if your case is not transferred to someone else.
Sorry you have to go through all of this. Its hard enough dealing with symptoms.
posted
I agree with amkdiaries. Forget the infusion company and order directly from a mail order pharmacy. This is what hubby has always done. We get some supplies from Apothecure and others from Wellness Pharmacy -- with the scrip we could call around and get the best prices. Hubby turns in the receipts to insurance for reimbursement -- yes we do have to pay upfront.
Hubby got his IV Primaxin from Walgreens -- they special ordered it for him and he would pick up a few vials as needed -- was billed thru regular insurance. Also get needles and syringes from Walgreens as well.
Good luck in resolving the situation.
If you stick with the infusion company I would go over the lady's head -- you have made a reasonable effort to resolve the situation so there is no reason to feel bad about complaining.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Thank you all for your support and advice. I appreciate it all. I saw my LLMD yesterday and told him about this problem and he was very surprised - he didn't say point blank that he never wrote the orders that way but I could tell he was baffled as to why the orders were there for only once a week dressing and huber needle change. So he wrote a script for twice a week dressing changes and I need to fax it to my infusion company (as soon as my dad gets off the phone so I can use the fax machine in his home office).
As for dealing with the infusion company, I will call and try to speak with my supply coordinator's supervisor or the nurse who came out last week who was very nice or my pharmacist who is also very nice. Basically if I speak to ANYONE other than the supply coordinator, I'm sure I'll be able to get some help. If possible, I want to ask to be switched to a different supply coordinator but there are only two on my "team" (there are different teams for different areas of the state) but it's worth asking.
amkdiaries, thanks for the idea of ordering supplies from elsewhere. I wouldn't have to go that far because I am also on service with another company for my IV hydration and supplies and I can get whatever I need from there so in the end I can get the supplies from somewhere, it would just make my life a whole lot easier to get the supplies I need from my local (antibiotic) company and it's the principal of the thing that bothers me so much. I feel I need to see this through with the local infusion company and hopefully have the supply coordinator understand that a lot of the time, the patient knows what they need and are not asking for unreasonable things.
JeffM, thanks for letting me know about my full mailbox - I just went and deleted a bunch of things so it should have room now.
And thanks everyone else for the ideas and support. I'll let you know how things go when I talk to someone else at the infusion company either today or Monday.
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Wow, amazing timing! No more than 5 minutes after posting that last reply to everyone, the nurse from last week (my nurse but I don't see her weekly since I do all my port care and infusions on my own but she's there to help me if I need it) called. She was calling about my tubing issues and I spoke to her about the huber needles and dressing changes and she said she already spoke to someone about that and got it straightened out for me so I don't even have to fax the orders from my doctor.
I also mentioned that I was having a lot of trouble with Tracey and would it be possible for me to switch to a different supply coordinator and she said she'd talk to the person in charge about that and let me know.
So it looks like things are working out okay. I really like this nurse and feel she's my best advocate at the company so if I have more problems I'll call her. I feel much better knowing she's there to help me and I don't think there will be a need to change companies or anything.
Thanks again for the support! It's so nice to know you're all there to help if I need it!
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![[Mad]](mad.gif)
I called about it and the supply coordinator said, "Oh, I don't know if we're allowed to send out that many, I'll have to check with someone higher up and get back to you." Okay, so she didn't call me back.
![[cussing]](graemlins/cussing.gif)
.![[bonk]](graemlins/bonk.gif)
sucks even more ![[Frown]](frown.gif)
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