I felt slightly better over the last few weeks, but didn’t see a huge improvement, and my numbers stayed about the same. My doctor isn’t in a hurry to do a round of IV antibiotics, but since I’m heading in that direction and my insurance will be changing in January, we decided to get it out of the way sooner rather than later. We discussed the port situation, and she thinks that the risk of bleeding in my lungs while on blood thinners is more dangerous than the risk of a clot, particularly since I’ve continued to have episodes of bleeding during the last few weeks. The whole thing is really a guessing game, since there’s no way to figure out how likely one outcome is over another. So we’re just going to go for the port without blood thinners, and of course monitor for clot symptoms.
I’m scheduled to have the port placed on Wednesday afternoon. It’s an outpatient procedure, and I don’t want to deal with another PICC line beforehand, so I won’t be admitted until afterwards. Hopefully they’ll have a bed for me that afternoon or evening so I can go straight upstairs after the procedure. Some people try to score reservations at fancy restaurants or hotels… I get excited about a room at HUP. At least my room is probably cleaner!
I’m a little anxious, partially because this is an unfamiliar procedure and I don’t know how it will go, partially because it’s unclear how much benefit I will end up getting. Since I haven’t been getting much benefit from IV antibiotics, the biggest advantage of the port may be that we can easily access it and do a round of at-home IV hydration to help loosen things up and clear out my chest whenever we want. Hopefully that will help me feel better between hospitalizations without having to go through all the drama of getting a PICC or being admitted.
In other news, Medicare in New Jersey sucks if you’re under age 50. If I get original Medicare, I’ll also need a Medigap plan to pay for the 20% that Medicare doesn’t cover. There are many different types of Medigap plans, however in New Jersey if you’re under 65 you can only get Medigap Plan C. Additionally, after hours of frustrating internet research and phone calls, I’ve learned that if you’re under age 50 there’s only ONE company that offers Medigap coverage in New Jersey. Between the Medigap premium, prescription premium (Medicare Plan D), and outpatient medical premium (Medicare Plan B ), I’ll be paying about $400 a month for health insurance. The other option is a Medicare Advantage plan, which is basically a Medicare HMO that bundles those plans under one provider. They have lower premiums, but high deductibles and copays – and with all my hospitalizations, specialist appointments, tests, and procedures, I’d end up spending even more over the course of the year. Additionally, since it’s an HMO, I might have trouble finding a plan that will allow me to cross state lines for treatment in Philadelphia. It’s been SUPER FUN figuring all this out over the last few weeks. I feel like I should be offering classes or something now that I have all this newfound information.
Oh, and none of this even accounts for prescription costs, because EVERY Medicare plan has exorbitant prescription copays when it comes to specialized CF medications. We’re talking several thousand dollars per year for my daily treatment routine. The only reason I’m not completely panicking is that there are patient assistance programs that should cover most of my prescription copays. If they don’t… well, I haven’t needed to start a GoFundMe yet, but I’m keeping it in mind in case things get desperate. Here’s hoping it doesn’t come to that.
Staying on my Healthcare Marketplace (aka Obamacare) plan isn’t an option, by the way. Even if the ACA wasn’t in the process of being dismantled, once you qualify for Medicare you no longer qualify for ACA subsidies, so my premiums would end up being just as expensive as Medicare.
So basically it’s been thrill a minute around here. I sure know how to party!
I’m scheduled to have the port placed on Wednesday afternoon. It’s an outpatient procedure, and I don’t want to deal with another PICC line beforehand, so I won’t be admitted until afterwards. Hopefully they’ll have a bed for me that afternoon or evening so I can go straight upstairs after the procedure. Some people try to score reservations at fancy restaurants or hotels… I get excited about a room at HUP. At least my room is probably cleaner!
I’m a little anxious, partially because this is an unfamiliar procedure and I don’t know how it will go, partially because it’s unclear how much benefit I will end up getting. Since I haven’t been getting much benefit from IV antibiotics, the biggest advantage of the port may be that we can easily access it and do a round of at-home IV hydration to help loosen things up and clear out my chest whenever we want. Hopefully that will help me feel better between hospitalizations without having to go through all the drama of getting a PICC or being admitted.
In other news, Medicare in New Jersey sucks if you’re under age 50. If I get original Medicare, I’ll also need a Medigap plan to pay for the 20% that Medicare doesn’t cover. There are many different types of Medigap plans, however in New Jersey if you’re under 65 you can only get Medigap Plan C. Additionally, after hours of frustrating internet research and phone calls, I’ve learned that if you’re under age 50 there’s only ONE company that offers Medigap coverage in New Jersey. Between the Medigap premium, prescription premium (Medicare Plan D), and outpatient medical premium (Medicare Plan B ), I’ll be paying about $400 a month for health insurance. The other option is a Medicare Advantage plan, which is basically a Medicare HMO that bundles those plans under one provider. They have lower premiums, but high deductibles and copays – and with all my hospitalizations, specialist appointments, tests, and procedures, I’d end up spending even more over the course of the year. Additionally, since it’s an HMO, I might have trouble finding a plan that will allow me to cross state lines for treatment in Philadelphia. It’s been SUPER FUN figuring all this out over the last few weeks. I feel like I should be offering classes or something now that I have all this newfound information.
Oh, and none of this even accounts for prescription costs, because EVERY Medicare plan has exorbitant prescription copays when it comes to specialized CF medications. We’re talking several thousand dollars per year for my daily treatment routine. The only reason I’m not completely panicking is that there are patient assistance programs that should cover most of my prescription copays. If they don’t… well, I haven’t needed to start a GoFundMe yet, but I’m keeping it in mind in case things get desperate. Here’s hoping it doesn’t come to that.
Staying on my Healthcare Marketplace (aka Obamacare) plan isn’t an option, by the way. Even if the ACA wasn’t in the process of being dismantled, once you qualify for Medicare you no longer qualify for ACA subsidies, so my premiums would end up being just as expensive as Medicare.
So basically it’s been thrill a minute around here. I sure know how to party!
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