Sorry for not writing in a little while, lots of things going on. Trying to maintain Bella’s care, our daughter, finishing out my semester of classes and finals, normal life on top of the things we deal with daily, etc. It’s been hard to force in the time, and today’s post may be a little short and sweet, kind of rant-ish. It’s been a LONG day.
The last week or so, I’ve had quite a bit on my plate, as I said above. Bella has been writhing in pain from burst ovarian cysts, chest pains, high heart rate, migraines, just thing after thing. I even had to go to the ER myself a few days ago because I got so sick I couldn’t even think straight. That bug/virus went through the house, and she had to deal with that on top of everything else as well. It’s been our own version of hell on earth. Not going to lie, it all built up and I kind of lost it a little, yelled a lot, and never again. Almost cost me our relationship, still might, but I’m pushing on and seeking help. Enough about me, more on to the culmination of our hell today.
Today I’ve been on the phone between Bella’s infusion pharmacy and her doctors office, while trying to ensure the pain Bella is currently in is taken care of the best we can as she verges on going to the ER or not. Still a possibility, even as I write, that she’ll finally not be able to take all the pain, heart palpitations, and nausea. She’s not doing well in any sense of the word.
I still can’t wrap my mind around it, and I got so angry and frustrated that somehow I looped back around to calm, but I feel like it’s still there inside somewhere, and it doesn’t feel good. So let me try to explain this as best I can as quickly as possible, because I’m still needed to take care of Bella til I can get some rest (hopefully).
I called her infusion pharmacy because we desperately need them to send her medications. For a while there was no prior authorization, to get it covered by insurance and we can not afford another $30 per day, $900 per month. We’re struggling to get by as is. However about 3 weeks ago it finally went through and got covered by insurance. Awesome, however the pharmacy needed updates from her doctor, which should have been easy enough. For the last three weeks, I have called her pharmacy at least 3 times a week, while sending uncountable messages to her doctor, trying to play middle man between the two.
Doctors say they send info, pharmacy says they never got anything. Pharmacy says they tried contacting doctor, Doctor says they haven’t got any messages or contacts. I don’t know who is lying, I don’t care anymore, I just know that it’s frustrating. Today I stopped caring about being nice to everyone and I wanted to get to the bottom of it all. I got a call this morning from the pharmacy, saying the couldn’t send her anything because if she’s not getting her supplies, she shouldn’t be using her port… They don’t realize she is on a different medication currently that is supposed to be replaced by the new one, and I was done with it.
We need her supplies because without them, and it’s well documented, she goes from cognitive decline, to confusion, to a form of catatonia, to finally a state of paralysis. This starts to occur just 20-30 minutes from a missed dose, and even if they arent sending her medications, they still need to send the supplies needed to change her dressing that needs to be changed at a minimum weekly. So that’s the exact point I get pushed past my limit, and I ask why they refuse to send her medications, that her doctor ordered, that is approved by her insurance. I’m still waiting for a satisfactory answer.
The Pharmacist said she needed more information about Bella’s treatment plan, because the doctor had ordered multiple things, and even though those medications aren’t starting right a way, they need clarification. I’ve never before been refused a medication because the pharmacist wants to know more about a patients overall care plan, and about medications down the line, that we aren’t even trying to get yet, nor need at this time.
So in my fury I contacted her doctor, and more or less demanded him call and talk to the pharmacist personally. It took an hour or two, but I finally get a message back saying he talked to her. So I immediately call the pharmacy, because I want to finally get this resolved. She’s in a meeting… I ask for a call back as soon as she’s out. about another hour and a half later I get the call back. Not to say she’s going to send us Bella’s medications, but that she needs more clarification, from the same doctor she talked to earlier… Furious now, I want to talk to whomever is above her, get transferred over, and talk to the director.
Now I entered the conversation a bit heated, and I apologized in advance when he picked up the line. All I want is her medication, which was ordered by her doctor, who is in charge of her care, of which we have insurance approval (for the last 3 weeks), and I wanted to know why she can’t have it. I even tried to calm myself a little and talk reasonably. His answers were unacceptable. However he did say a few things I made mental notes of. “legally they can release the medication”, “The pharmacist does not supersede her doctor”, “They will not send the medication without the information the pharmacist was asking for”. No reason as to why the pharmacist didn’t ask all that when talking to her doctor. No reason as to why they’re holding her medication hostage for information no other pharmacy would need. However he did get upset and kind of unprofessional because I kept asking why, and how they can do this. Why they can legally send us her medication that stops all these things, and can very well be life saving, but we haven’t even been able to begin for the last 2 months for various reasons. Why they need to know so much about all the other aspects of her care, like where she goes to get infusions since she’s not getting their medicaions anymore.
The answer is the ER for fluids when it gets too bad, as well as testing to make sure things aren’t getting worse than they already are. The med she’s currently on that’s being phased out, that we’re days away from being out of. and they don’t need to know that information. I’m done giving a pharmacy, and it is a pharmacy, every little detail of her care that we are not using them for. He more or less insinuated that unless we comply and give them all this extra information, even though they have the doctors orders, plan of treatment, insurance authorization and me asking for it, they will not give her her medication.
Sent another message to her doctor after that. I’m fuming mad at this point, and suddenly I’m calm. It’s not til past time I can do anything to fix the situation or get the pharmacy to send anything that we get the call from her doctor. He also didn’t understand what else they could possibly need, having talked to them earlier already. He did order a CT for Bella because of the Cyst pain. apparently when she was at the ER on Friday she had a 1.4 cm cyst on her ovary that was filled with blood, likely to burst. We’re pretty sure it did, and a lot of her stomach pain is the blood and pus from the burst that’s irritating and inflaming everything in her abdomen.
So unless it is taken care of by Thursday, we are filing a formal complaint against the pharmacy. We will happily go through the hassle of finding a new one, who will be able to special order her supplies because she can’t use standard without her skin breaking down to look like a burn victim and getting infections, and redo the whole prior authorization process to get the medicine covered yet again, because they refuse to send it. I don’t know how it’s legal. Even now it’s upsetting, and I’m calm. Pardon my french, but I have run out of fucks to give. I don’t know how it’s possible to have a situation like this, and no answer has been satisfactory. She’s not allergic, it doesn’t have adverse reactions to any other medications, it’s ordered, they have a treatment plan, and it’s covered by insurance. Why is it so hard for us to get? Sorry, but it just blows my mind.
We have a full week of appointments for both Bella and Savayah. I might need to make psych appointment because I might be broken now. Today has been a culmination of a long period of pain, frustration, anger, upset, and who knows what else. I hope tomorrow’s better, but I know I shouldn’t hold my breath. It’s heartbreaking seeing Bella so down, in so much pain. She hasn’t been able to even leave bed to go to the bathroom.
This was longer than I anticipated and if you made it this far I thank you for bearing with me. Please share, because I could use the help. I still can’t fathom why this is happening. If you’re able too, please donate everything is getting harder, so close to getting her on the correct medications. Thank you for reading and letting me get this all out. I think I’m done for now.
Here’s a picture of me and Bbygirl getting home from the laundromat to lighten the mood.