Things are finally heading in the right direction. Tuesday night was the first time in days that I didn’t have a fever, and I haven’t had a fever since. I also noticed that I was breathing a little better. The GI issues continue to be a work in progress, but are much better, and hopefully things will be back to normal soon. Between nausea and pain from the port, initially I was having difficulty laying down for chest PT. Things have been better over the last couple days though, so hopefully I’ll be able to work harder on clearing out my lungs. Right now it looks like I’ll be here through the weekend, but I should be sprung sometime next week.
Unfortunately, on Tuesday I found out about yet another Medicare complication, which upended plans that I thought were finally settled. I had decided to get original Medicare along with a prescription and medigap plan. Totally by chance, during a discussion with a case manager about homecare companies and insurance coverage, I discovered that original Medicare will only cover feeding tube supplies if that is the person’s primary source of nutrition. My overnight tube feeds are not my only or even necessarily my primary source of nutrition, but they are an extremely important supplement that has allowed me to maintain a healthy weight. They also help me stay hydrated, which is hugely important. And they are NOT cheap.
I asked her to check whether the Medicare Advantage plans cover it, and yesterday she informed me that they do. So just when I had settled on plans and finished all my applications, I need to chuck it all and start all over again. I compared plan information yesterday, and today I have to call the companies to make 100% sure that they cover feeding tube supplies as well as home infusion. I also need to make sure that my providers in Philly are in network. And then I need to determine whether I can cancel the other plans that I JUST signed up for last week. I’m sure it will all be SUPER FUN and exactly what I want to do while recovering from a CF exacerbation.
Of course, all this coverage comes at a price… Literally. I will be paying a ton in copays for every appointment, procedure, and supply. I just won’t know how much I’ll be spending until I actually spend it, since it’s all dependent on how much treatment I end up needing over the course of the year. With the plans I had decided on before, I paid a set amount in premiums and only had copays for prescriptions, so I knew exactly how much it cost. With Medicare Advantage, I can guess how much I’ll be spending, but all I know for sure is the upper limit, because the medical out of pocket max is $6,700 a year. I hope I don’t end up going that high, but it’s a definite possibility. Also, that does NOT include prescription copays, which have no out of pocket max.
The whole Medicare thing has been extremely frustrating and upsetting, and I’ve cried more than once trying to figure out how to get my needs met without going broke. But I’m also confident that, one way or another, I will get what I need. That is mostly because I know I have a huge supportive network of friends and family who will help me out if we get into GoFundMe territory, as well as an amazing and generous Jewish community. I am so extremely grateful to know that I have such a strong safety net, especially since I know many people in this situation don’t have those resources. I would be a lot more panicked if it weren’t for that. Thank you for being awesome!
Unfortunately, on Tuesday I found out about yet another Medicare complication, which upended plans that I thought were finally settled. I had decided to get original Medicare along with a prescription and medigap plan. Totally by chance, during a discussion with a case manager about homecare companies and insurance coverage, I discovered that original Medicare will only cover feeding tube supplies if that is the person’s primary source of nutrition. My overnight tube feeds are not my only or even necessarily my primary source of nutrition, but they are an extremely important supplement that has allowed me to maintain a healthy weight. They also help me stay hydrated, which is hugely important. And they are NOT cheap.
I asked her to check whether the Medicare Advantage plans cover it, and yesterday she informed me that they do. So just when I had settled on plans and finished all my applications, I need to chuck it all and start all over again. I compared plan information yesterday, and today I have to call the companies to make 100% sure that they cover feeding tube supplies as well as home infusion. I also need to make sure that my providers in Philly are in network. And then I need to determine whether I can cancel the other plans that I JUST signed up for last week. I’m sure it will all be SUPER FUN and exactly what I want to do while recovering from a CF exacerbation.
Of course, all this coverage comes at a price… Literally. I will be paying a ton in copays for every appointment, procedure, and supply. I just won’t know how much I’ll be spending until I actually spend it, since it’s all dependent on how much treatment I end up needing over the course of the year. With the plans I had decided on before, I paid a set amount in premiums and only had copays for prescriptions, so I knew exactly how much it cost. With Medicare Advantage, I can guess how much I’ll be spending, but all I know for sure is the upper limit, because the medical out of pocket max is $6,700 a year. I hope I don’t end up going that high, but it’s a definite possibility. Also, that does NOT include prescription copays, which have no out of pocket max.
The whole Medicare thing has been extremely frustrating and upsetting, and I’ve cried more than once trying to figure out how to get my needs met without going broke. But I’m also confident that, one way or another, I will get what I need. That is mostly because I know I have a huge supportive network of friends and family who will help me out if we get into GoFundMe territory, as well as an amazing and generous Jewish community. I am so extremely grateful to know that I have such a strong safety net, especially since I know many people in this situation don’t have those resources. I would be a lot more panicked if it weren’t for that. Thank you for being awesome!
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