Oct 4

Hey everyone. So I wanted to catch you all up with what's happening right now.

I started getting home infusions: 1 bag of saline 3 times a week and benadryl twice a day. 

Because of my skin reactions due to mast cell, I was in need of at least 2 dressings I could alternate between to prevent developing a reaction to the ones I tolerate. 

Well that has been a big struggle. My first company could not provide it; it wasn't in their formulary (even though other people have said they've gotten it). 

My 2nd company I called ahead to confirm. Do you carry microneedles ✔ do you have silicone dressings ✔ I'm using a pump can you get me one ✔ I want to keep my nurse ✔

When my supplies can microneedles ❌ pump❌ silicone dressing ❌ nurse ✔

I spoke with them & they sounded like they were doing their best to get what I needed. I will say they did provide preservative free benadryl, which was a plus

 

I contacted them & explained the need for a pump as well as the needles & dressings & they sent me a list of what needles they supply (nothing micro) & said they'd have to get approval on the dressings. So the next day a pump came (with a powercord bc you're expected to be stationary for 4hrs 🙄) & a variety of needles. That night my wonderful nurse came & attempted the needles that were provided. I say attempted bc she tried 4xs & wasn't able to correctly attach them. 

So another email is sent. We need another needle option & would appreciate batteries because my stomach is unreliable. Next day reply was an explanation for the needles. I did get batteries. 

This is where it gets interesting, if you're still following. Not long after I get a call from a supervisor who has been away until today(?) & sees what's happening. My multiple deliveries just can't happen. They wont provide the dressings or needles. & they dont see the need for my nurse (this is all today). Another nurse from the company they don't approve of came by to access me (she's been around long enough that they refer to her as the pro). She did get it need in but as she was driving away I could see the needle poking above the skin (a big nono & evidence that those needles are a struggle). I call the regional supervisor & explain things & of course it's we'll get back to you. Then my nursing agency calls saying I've been discharged from their care (absolutely illegal). I call the supervisor back & get the same answer. And 5 hrs later he responds with the same answer everyone else gives but says we have another nurse for you. But I've been waiting 5 hrs with a needle poking out of my skin that could have been infected or bumped 😒. 

I do the only other thing I can think of call insurance. They put me in touch with a rep of the home agencies & I eventually end up with an advocate. The advocate says I need to go get my port deaccessed at the er bc it would be a liability if I did it. So my wonderful driver took me to the er to get deaccessed. Now I'm waiting to see if an emergency nurse with supplies can come access me. I've now missed 2 saline infusions & 2days worth of benadryl.

I am just shocked @ what this agency did.