Hello Folks -
Just had something very strange happen with my treatment program and was hoping that someone could shed some light on it.
My first "LLMD" (really an Integrative Nurse Practitioner who can write scripts) appointment ever took place here in NY near Albany on 04/10/2012.
It was extremely emotional for me as she validated that I was indeed very sick and wrote a script for a PICC line for IV Ceftriaxone (4 weeks) as well as scripts for about 12 other tests and imaging.
I was so happy because I finally felt I was finally in the hands of a LL care-giver after 5 or so years of....well...hell.
Being a newbie to home IV, she explained that the home infusion/nursing service would set up the PICC placement and would also deliver the abxs, infusion supplies and dress the wound and take blood each week.
I had been told that my Ins. Co. (United Health/Empire) approved the 4 weeks of IV and home infusion services.
My nurse said she would re-evaluate me after the 4 weeks before deciding whether to recommend continuing IV or not.
Things were going very well after 10 days or so as my scary neuro-symptoms began to deminish and that is when strange "administrative" things started happening.
During my third week of treatment, the infusion company called to "remind" me that my IV treatment would be completed the following week.
I found this statement to be very strange because I had yet to see my provider for my follow-up visit to go over my labs and address the issue of whether to continue with my IV treatment.
In response to the infusion company rep's "reminder", I asked "who said my treatment would be completed next week? For goodness sake, my provider and I haven't had the chance to discuss it yet..."
Well, of course the rep was confusing continued "treatment" with continued "insurance company approval" for more than the original 4 weeks.
I asked the rep repeatedly whether she or her company had been in touch with my provider to address this issue and after a lot of hemming and hawing she told me that they had not been "in touch".
I asked her "with all due respect, shouldn't this important issue be my provider's call and to please call her and keep me, the patient, out of the middle?
Reluctantly she agreed to call my provider and get back to me.
Well, at my follow-up monthly appointment with my provider the following week, I explained the phone conversation with my provider who only said to me that "it was very unusual" for the infusion company to have made such a call to me without speaking to her, the provider, first.
My provider also confirmed that the infusion company had not tried to contact her office at all, contrary to what the rep told me she would do. My provider told me that she, herself, would call them.
Health-wise, my provider recommended to me that I continue the IV and that since I was on the last course of abx in my possession she, then and there, wrote me a script for a month's supply of ceftriaxone and told me to go quickly to my local pharmacy to see if I could get it filled.
I took her advice and, lo and behold, the script "went through" at the pharmacy and all I had to pay was a $20 dollar co-pay. This all occurred on 05/15/2012.
Now, the following morning I received a nasty phone call from the infusion company who not only knew about the new script, they appeared to be very upset that it had been filled.
I, again, was completely baffled about the infusion company's position and their tone and again demanded that they call my provider instead of putting me, the patient, in the middle. At one point, the company manager flatly refused my demand that he call my provider until I read from his company's own literature that the infusion company "would work closely" with the patient's provider.
This went round and round until the manager agreed to call my provider but, in the interim, I would have to pay COD for any further services from his company.
As it turns out, the infusion company did not directly call my provider. Instead, the manager sent my provider an email the contents of which completely poisoned my relationship with my provider who refused to divulge the contents of said email and also refused to make a copy available to me pursuant to HIPPA and other public health laws and statute.
Now, it is at this point that the entire situation became entirely strange to me and also began to reek of something very unsavory.
During one of my phone conversations with the infusion company, one of the reps "let slip" that my insurance company denied my request for approval to extend the IV treatment past the originally approved 4 weeks. At the time, I thought this strange as neither I nor my provider ever discussed, let alone submitted, such a request to the insurance company as we had not yet met again to discuss the first four weeks of treatment, at the time that "the slip" was made !
Digging into the paperwork, I discovered that it was the infusion company itself who made the extension request without the slightest input from myself or mr provider! Moreover, this letter request was submitted a mere few days after the first 4 week approval and during my first week of home IV treatment !
Faced with these facts, I point blank asked the infusion manager just how it was that a nursing service could be authorized to make such an inportant request unilaterally, without input from patient or provider?
At this point the manager was foundering quite obviously and said something quite concerning, words to the effect that "we try to be proactive and we assumed that your provider would (in about three weeks time) want to make the same request at that point in time."
It was then that I looked at the discombobulated manager and told him, in words to the effect, "please do not reduce the pressure of your bladder by relieving its contents upon one of my lower extremities and then proceed to tell me it is merely precipitation."
Sorry folks. I got silly there at the end and I do want to thank all those who hung in to hear my tale.
Please give me your thoughts on this if you may as I am very perplexed, frustrated and upset over the whole thing.
Thanks. - Stevie
