The Anticipation
It's like Christmas around here as we wait for insurance to determine the fate of Sam...
It's not exactly like Christmas because there are no Jingle Bells, no gifts, no treats but there is a sort of anxiety and sleeplessness that has ruined the last few nights. His counts are just so low! He isn't running a fever so that is our only saving grace at this point but the second he does, they will put him in the hospital. For now, we have come to an agreement that Sam will go on an outpatient basis to get transfusions and Neupogen- the drug to coax his marrow to push out a few good cells.
I couldn't figure out why our insurance denied the treatment Sam needed last weekend until the Specialty Pharmacy called yesterday.
They apologized for not being able to get anything authorized because the only way insurance would cover it, is if it was done inpatient. She kept talking about Remicade as the drug in question. I finally questioned her on why they were trying to authorize Remicade? Finally, it became clear someone along the way had made a medical mistake and was trying to authorize an immuno suppressant drug called Remicade which is not at all what Sam needs.
So, that was corrected and we are still waiting on authorization. The pharmacist also said, "Next year, we can try to get you set up with some patient assistance to help you cover this cost but this year, we can't do that for you."
"Okay, how much does that help with?" I asked
"$5000.00 of roughly $15,000." she replied.
I swallowed hard!! $15,000 every month for Sam's treatment. Sadly we have the worst insurance known to man and at the rate they are going with denials, I'm scared that once we start, they will drop us, our rates will go sky high-er or we will max out our benefits too fast. This is a life saving treatment and it feels really scary to be at the mercy of an insurance company and me...I'm am completely overwhelmed with the cost of taking care of my family these days.
I have to pay tribute to our sweet Immunologist Dr. Gundlapalli. He has been the very best doctor we have ever had. He texted me regularly through the weekend, even Sunday. He texted me several times yesterday, today and tonight. He is so concerned with Sam and he's been working so hard to jump through the ridiculous hoops our insurance company has put him through. Everything would have been so much easier if I had of consented to take Sam to Utah for a brief inpatient stay but I refused that. He was compassionate and understanding and worked with me; with Sam.
Sam is very upset and frustrated that this will be his new normal every week. It's hard on so many levels. I did talk to our local hospital this afternoon and they are guessing they will have the paper work completed and Sam will spend 12 hours on Friday in the hospital to start his first treatment. That will be a very sad day.
I was going to talk about how I nearly burned down the kitchen on Sunday. When I say I am tired and having a hard time staying focused...I really mean it. I seriously have no recollection of even putting a pan on the stove but I did. I was making rice pilaf and put a 1/2 C of butter in a pan and turned on high heat. I don't know how much time passed but I was jolted back to reality when every smoke alarm in the house went off and smoke filled the house! FILLED the house.
Shelbie and Sam were downstairs sleeping and they ran upstairs screaming that there was a fire but I was already dealing with it. Flames over 12" high flew out of the pan. The microwave above was black. I was so disoriented, I grabbed the pan and ran it to the sink to pour water on it but then remembered that water on a grease fire explodes. I set the flaming pan down on the counter, below the upper cabinets and ran to get a lid from the cupboard across the kitchen. I didn't think one thing through. I felt so confused the whole time. I did get the fire out but melted the counter and black smoke covered the kitchen.
My house still smells like a boy scout camp. I finally got the last of the black smoke cleaned off the ceiling! What a mess! We are so lucky and I feel so stupid. Needless to say...we didn't have rice pilaf for dinner.
It's not exactly like Christmas because there are no Jingle Bells, no gifts, no treats but there is a sort of anxiety and sleeplessness that has ruined the last few nights. His counts are just so low! He isn't running a fever so that is our only saving grace at this point but the second he does, they will put him in the hospital. For now, we have come to an agreement that Sam will go on an outpatient basis to get transfusions and Neupogen- the drug to coax his marrow to push out a few good cells.
I couldn't figure out why our insurance denied the treatment Sam needed last weekend until the Specialty Pharmacy called yesterday.
They apologized for not being able to get anything authorized because the only way insurance would cover it, is if it was done inpatient. She kept talking about Remicade as the drug in question. I finally questioned her on why they were trying to authorize Remicade? Finally, it became clear someone along the way had made a medical mistake and was trying to authorize an immuno suppressant drug called Remicade which is not at all what Sam needs.
So, that was corrected and we are still waiting on authorization. The pharmacist also said, "Next year, we can try to get you set up with some patient assistance to help you cover this cost but this year, we can't do that for you."
"Okay, how much does that help with?" I asked
"$5000.00 of roughly $15,000." she replied.
I swallowed hard!! $15,000 every month for Sam's treatment. Sadly we have the worst insurance known to man and at the rate they are going with denials, I'm scared that once we start, they will drop us, our rates will go sky high-er or we will max out our benefits too fast. This is a life saving treatment and it feels really scary to be at the mercy of an insurance company and me...I'm am completely overwhelmed with the cost of taking care of my family these days.
I have to pay tribute to our sweet Immunologist Dr. Gundlapalli. He has been the very best doctor we have ever had. He texted me regularly through the weekend, even Sunday. He texted me several times yesterday, today and tonight. He is so concerned with Sam and he's been working so hard to jump through the ridiculous hoops our insurance company has put him through. Everything would have been so much easier if I had of consented to take Sam to Utah for a brief inpatient stay but I refused that. He was compassionate and understanding and worked with me; with Sam.
Sam is very upset and frustrated that this will be his new normal every week. It's hard on so many levels. I did talk to our local hospital this afternoon and they are guessing they will have the paper work completed and Sam will spend 12 hours on Friday in the hospital to start his first treatment. That will be a very sad day.
I was going to talk about how I nearly burned down the kitchen on Sunday. When I say I am tired and having a hard time staying focused...I really mean it. I seriously have no recollection of even putting a pan on the stove but I did. I was making rice pilaf and put a 1/2 C of butter in a pan and turned on high heat. I don't know how much time passed but I was jolted back to reality when every smoke alarm in the house went off and smoke filled the house! FILLED the house.
Shelbie and Sam were downstairs sleeping and they ran upstairs screaming that there was a fire but I was already dealing with it. Flames over 12" high flew out of the pan. The microwave above was black. I was so disoriented, I grabbed the pan and ran it to the sink to pour water on it but then remembered that water on a grease fire explodes. I set the flaming pan down on the counter, below the upper cabinets and ran to get a lid from the cupboard across the kitchen. I didn't think one thing through. I felt so confused the whole time. I did get the fire out but melted the counter and black smoke covered the kitchen.
My house still smells like a boy scout camp. I finally got the last of the black smoke cleaned off the ceiling! What a mess! We are so lucky and I feel so stupid. Needless to say...we didn't have rice pilaf for dinner.
Omihek!!
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