Oct 11 2019

Well it's been a week & unfortunately I'm still where I started. Not officially with an agency, no nurse, & no port access. My doctor's office feels it's a risk for me to access on my own.

So I'm @ the er getting it accessed for a heparin lock until something is done. That way at least I don't get a clot 🤷‍♀️

Oct 7 2019

So apparently in NC home health agencies that are usually run by a specialty pharmacy, do not carry the supplies needed for someone like me, I guess because I'm special & rare 😉 as of now & the foreseeable future, I'm not expecting to be doing any more of my infusions. Every place has said what I require is not in their formulary. Some have been polite; others not so much & have been reported 🙄. I will have to go at least once more to get a heparin flush so I don't develop a clot. In my mind the only option left is finding a way to do this on my own & find a supplier or multiple suppliers to send what I need. But that is thinking ahead. I'm just going to ride it out & take it one day @ a time. 

These infusion were significantly helpful. I wasn't having as many dizzy spells & my torturous colon & mast cell were not causing my stomach as much of a problem.  

I haven't received fluids since last mon; so the reality is that it just might not happen. 

I will update if my advocate finally gets somewhere

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.

Oct 1 2019

My therapy is crafting. I love to get lost in a card

Dec 30 2019

I realize I'm not consistently updating this page. So get ready; I'm going to last day there was a post & will put everything on here!

So someone gave me some sound advice today I thought I might share.
Let it go 🙂
I'm in a situation where getting what I need could possibly recreate the problem in the first place. I'm one to analyze, research, weigh pros v cons. I probably micromanage every aspect of my health; because if I don't, there's no guarantee i will get what is needed. But as I am learning from doctor after doctor, there's no telling how my body will handle what is thrown at it.
During my multiple hospital stays @ duke, I came in contact with the one of the best departments that handles leaks. People come from all over to see them.
I recently contacted them because of my multiple symptoms that point to the possibility of a problem. Of course the test ordered comes with a risk & so my mind wouldn't stop spinning.
So a very kind person told me I just need to let it go. I'm in the hands of the best specialists out there. I need to allow them to make the decision and trust they make the right choice.

So that is my plan. Have a happy new year!

Aug 29

Infusions started tonight! All seems to be going well!

Aug 23rd

I finally had my port accessed! With the emla (numbing) cream & a great nurse, it felt no different than an iv stick. So now that we know it is working correctly, I will begin home infusions next week! Hopefully things continue to go smoothly. I hope everyone else is doing well too ❤