I never planned to fight
I've had my struggles with our medical providers over the last several months and many of those issues I've talked about at length.
When I met with my friends from Texas on Sunday afternoon, he did something for me I had never imagined could happen. He is an ER doc at a large hospital in Texas and part of his career has been trying to protect the rights of patients when it comes to insurance companies. He has some press conferences etc. on social media where he addresses some of these issues.
We got on the topic of healthcare because he knows I am passionate about healthcare design and taking care of my kids. I mentioned the problems we were having with too much testing and researching and not enough treatment. I didn't want to dwell on it because I just wanted to enjoy the time we had together.
He said he had friends at the University hospital and would reach out to them to see what could be done. I didn't think much about it but by late Sunday night, I was in a group text with one of the administrators at University of Utah, over the Neurosciences division.
I didn't sleep for more than 1. 5 hours Sunday night...suffice it to say, I haven't slept more than 4 hours since Saturday. I have been an anxious mess as a conference call was planned between me and University Hospital. I don't like to complain. I don't want to get anyone in trouble, create waves or sound like some irrational, crazy person. I spent all night hating myself, questioning my ability to think, to take care of my kids; my capacity to do anything really. I felt more worthless than I have ever felt in my life. I started thinking about all the ways I feel we have been mistreated by the hospital, and wondered if maybe it was all just a misunderstanding because I'm so darn tired and spread too thin.
I grilled my kids in preparation for this..."They did say this.....right?" "You heard that too right?" "Am I wrong?" "Did I miss something?" It's been a terrible time to be me. Second guessing everything.
I spent nearly half the day on Monday trying to prepare notes because my recall memory is poor at best and when I feel anxious or on the hot seat, I can be sure I won't even remember my name. I wrote down all my grievances and prepared a brief history and context for the administrator so he would understand the complexity of the situation. As I did that, I felt completely overwhelmed to see it all written out on paper. All the problems, the diseases, the history, the here and now. I needed a lifeline.
How is it that these kids are even still alive?! How have we even made it this far?
We had our conference call and the gentleman from the U was the nicest I have met. He was considerate, kind, he listened with what felt like intent. I tried to be precise in my words and kept emotion out of it, at least until the end of our long visit and then my feelings just couldn't be contained. I expressed to him how scared I am of retaliation from the hospital because I was having this conversation. He is just one man. I have seen the power of one when it comes to making decisions that hurt my children and myself. If any of these doctors hear what I have done and become offended, I am in deep trouble. He said that wouldn't happen. He said what has happened is unacceptable. I gave him permission to access all of our medical records so he can read clinic notes, communications I have had back and forth. He will be able to see the words..."Just because she has significant decline in her lung function, doesn't mean we have to treat her." It's not in my head. I have read it and I have reread it.
But...it all scares me to death. I have no recourse now but to wait. I've opened a Pandora's box I'm afraid.
I will say this...I was so impressed with the professional and compassionate feeling I had about this Administrator. I know that he will do right by me so it's not him I'm worried about...It's all the other directors, nurses, providers because they will not likely be as considerate and kind. Still, when the call ended I cried buckets of tears that at least I got to tell my side of the story and even though I am questioned and accused and mistrusted, he heard, he read, he understood at least some part of how hard things are and have been and that moment of being witnessed was worth it.
I'm in this terrible place where I feel scared that we will be cut off from care at the University over this and they will get their way and I feel scared that they will decide that they do need to step up and start treatment and what if treatment is horrible and what if it kills them....It's the dread of getting what you want.
The truth is, I don't know what I want. I don't know what the right thing is. I truly hope that God shows up at some point and whatever the outcome is from this...I know it's right. I will be waiting, most anxiously as things begin to unfold for this situation.
I got another letter of refusal for payment from my insurance company...this time, for the pathology that was done for Spencer's dozens of biopsies in November...they are refusing to cover just the pathology part! And, I still have the accusations from the online specialty pharmacy hanging over my head, no word yet on that developing story.
Talk about living by Faith!
When I met with my friends from Texas on Sunday afternoon, he did something for me I had never imagined could happen. He is an ER doc at a large hospital in Texas and part of his career has been trying to protect the rights of patients when it comes to insurance companies. He has some press conferences etc. on social media where he addresses some of these issues.
We got on the topic of healthcare because he knows I am passionate about healthcare design and taking care of my kids. I mentioned the problems we were having with too much testing and researching and not enough treatment. I didn't want to dwell on it because I just wanted to enjoy the time we had together.
He said he had friends at the University hospital and would reach out to them to see what could be done. I didn't think much about it but by late Sunday night, I was in a group text with one of the administrators at University of Utah, over the Neurosciences division.
I didn't sleep for more than 1. 5 hours Sunday night...suffice it to say, I haven't slept more than 4 hours since Saturday. I have been an anxious mess as a conference call was planned between me and University Hospital. I don't like to complain. I don't want to get anyone in trouble, create waves or sound like some irrational, crazy person. I spent all night hating myself, questioning my ability to think, to take care of my kids; my capacity to do anything really. I felt more worthless than I have ever felt in my life. I started thinking about all the ways I feel we have been mistreated by the hospital, and wondered if maybe it was all just a misunderstanding because I'm so darn tired and spread too thin.
I grilled my kids in preparation for this..."They did say this.....right?" "You heard that too right?" "Am I wrong?" "Did I miss something?" It's been a terrible time to be me. Second guessing everything.
I spent nearly half the day on Monday trying to prepare notes because my recall memory is poor at best and when I feel anxious or on the hot seat, I can be sure I won't even remember my name. I wrote down all my grievances and prepared a brief history and context for the administrator so he would understand the complexity of the situation. As I did that, I felt completely overwhelmed to see it all written out on paper. All the problems, the diseases, the history, the here and now. I needed a lifeline.
How is it that these kids are even still alive?! How have we even made it this far?
We had our conference call and the gentleman from the U was the nicest I have met. He was considerate, kind, he listened with what felt like intent. I tried to be precise in my words and kept emotion out of it, at least until the end of our long visit and then my feelings just couldn't be contained. I expressed to him how scared I am of retaliation from the hospital because I was having this conversation. He is just one man. I have seen the power of one when it comes to making decisions that hurt my children and myself. If any of these doctors hear what I have done and become offended, I am in deep trouble. He said that wouldn't happen. He said what has happened is unacceptable. I gave him permission to access all of our medical records so he can read clinic notes, communications I have had back and forth. He will be able to see the words..."Just because she has significant decline in her lung function, doesn't mean we have to treat her." It's not in my head. I have read it and I have reread it.
But...it all scares me to death. I have no recourse now but to wait. I've opened a Pandora's box I'm afraid.
I will say this...I was so impressed with the professional and compassionate feeling I had about this Administrator. I know that he will do right by me so it's not him I'm worried about...It's all the other directors, nurses, providers because they will not likely be as considerate and kind. Still, when the call ended I cried buckets of tears that at least I got to tell my side of the story and even though I am questioned and accused and mistrusted, he heard, he read, he understood at least some part of how hard things are and have been and that moment of being witnessed was worth it.
I'm in this terrible place where I feel scared that we will be cut off from care at the University over this and they will get their way and I feel scared that they will decide that they do need to step up and start treatment and what if treatment is horrible and what if it kills them....It's the dread of getting what you want.
The truth is, I don't know what I want. I don't know what the right thing is. I truly hope that God shows up at some point and whatever the outcome is from this...I know it's right. I will be waiting, most anxiously as things begin to unfold for this situation.
I got another letter of refusal for payment from my insurance company...this time, for the pathology that was done for Spencer's dozens of biopsies in November...they are refusing to cover just the pathology part! And, I still have the accusations from the online specialty pharmacy hanging over my head, no word yet on that developing story.
Talk about living by Faith!
That is frightening and amazing. At least if the worst happens and they start treating you badly, you have someone to contact about it! Hopefully this means positive change!
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