The last time I updated I was in the middle of a 2 week (turned into 3 week) course of Zosyn. Without too many boring details I went in after 10 days of meds and my lung function only climbed a bit. I went from 26% in clinic (dipped to 22% in the hospital, BUT I hadn't had my bronchodilator and I have horrible asthma and basically can't breathe without it so I totally don't think that one counts) to 28% in the ten days. A 2% increase is absolutely crushing because it isn't clinical significant. I felt totally defeated and super frustrated that the hospital and IVs were all a waste. We agreed to give it 14 days and I also added Bactrum since some of my bugs were sensitive to it. Around day 13 I actually started to feel better and called to extend my IVs to 21 days.
I just went into clinic today (28 days after starting IVs and a full week off of IVs) and my PFTs were 36% which is basically my baseline. Whew! I am so relieved to have improved so much. It just proves to me that my body really does need longer doses of IVs.
Getting back to baseline came at a perfect time because I am getting Symdeko tomorrow!! I wasn't overly optimistic I would have the opportunity to try Symdeko because it is more expensive that orkambi and I didn't have confidence my insurance would approve it. Somehow my insurance did approve it and I am starting soon! I am so curious to see if I feel any different between Orkambi and Symdeko.
Friday, April 20, 2018
Tuesday, April 3, 2018
Drug Drama
Sorry for the delay in updating about the post hospital drama. In order to keep this from turning into a novel I will give a quick and condensed version.
Prior to being discharged I got a phone call from the pharmacy that gives me my home meds (which differs from my usual pharmacies). I was told that the system was down and so they couldn't confirm my insurance. What this meant was the only way I could go home with IVs was to sign a form that stated if my insurance didn't cover my home IVs I would be financially responsible. Since I was 100% confident that my insurance would cover these home IVs I signed the paper. You may have caught on to where this is going...
Two days later (Monday when everything was open again) I got a call from the pharmacy saying that my insurance didn't actually cover medication and that they needed to send the rest of my IVs, but that I needed to pay out of pocket. Now before I go on I must say that I sorta laughed everything off. I know my insurance covers my home IVs and I know that I get medications every.single.month that are covered by my insurance. So I told her she was mistaken and even pointed out I get a medicati0on that cost $250,000/year every single month that my insurance covers so her statement that I have no medication coverage with my insurance was clearly incorrect. I thought she would at least question her ability to understand my insurance if I clearly was getting medication through my insurance, nope! She insisted I was wrong. I then told her exactly how to bill my insurance, but she insisted that I was incorrect and I needed to pay for my supplies. I got frustrated and told her to contact my insurance directly. She hung up.
Basically, to keep from boring you I went back and forth with her, called my insurance and left messages (why do real people never answer), called my CF nurse to help me out (she was on vacation and the on call nurse was completely useless), and spent the first 48 hours home fighting the most ridiculous battle of my life. Finally, I went online and found a form from my insurance about how to bill medications and had my dad (who has a fax machine) fax it to my pharmacy.
The next day the pharmacy called and apologized saying they didn't know the policy. This pissed me off because I was telling them exactly what they needed to do from the beginning. Okay, so I get it. I am just a patient with 33 years of insurance experience and clearly don't know what I am talking about. Fine, but I kept insisting they call my insurance because they would clearly know whether or not they would cover my medication, but that never happened. So rather than do the job they are paid to do I spent the first few days frantically trying to prove something that I knew for certain, but nobody would believe me. Grrr. Can you tell I still get fired up about it?
I am now on day 12 of IVs and thankfully my insurance is paying for them.... just like I knew they would!
Prior to being discharged I got a phone call from the pharmacy that gives me my home meds (which differs from my usual pharmacies). I was told that the system was down and so they couldn't confirm my insurance. What this meant was the only way I could go home with IVs was to sign a form that stated if my insurance didn't cover my home IVs I would be financially responsible. Since I was 100% confident that my insurance would cover these home IVs I signed the paper. You may have caught on to where this is going...
Two days later (Monday when everything was open again) I got a call from the pharmacy saying that my insurance didn't actually cover medication and that they needed to send the rest of my IVs, but that I needed to pay out of pocket. Now before I go on I must say that I sorta laughed everything off. I know my insurance covers my home IVs and I know that I get medications every.single.month that are covered by my insurance. So I told her she was mistaken and even pointed out I get a medicati0on that cost $250,000/year every single month that my insurance covers so her statement that I have no medication coverage with my insurance was clearly incorrect. I thought she would at least question her ability to understand my insurance if I clearly was getting medication through my insurance, nope! She insisted I was wrong. I then told her exactly how to bill my insurance, but she insisted that I was incorrect and I needed to pay for my supplies. I got frustrated and told her to contact my insurance directly. She hung up.
Basically, to keep from boring you I went back and forth with her, called my insurance and left messages (why do real people never answer), called my CF nurse to help me out (she was on vacation and the on call nurse was completely useless), and spent the first 48 hours home fighting the most ridiculous battle of my life. Finally, I went online and found a form from my insurance about how to bill medications and had my dad (who has a fax machine) fax it to my pharmacy.
The next day the pharmacy called and apologized saying they didn't know the policy. This pissed me off because I was telling them exactly what they needed to do from the beginning. Okay, so I get it. I am just a patient with 33 years of insurance experience and clearly don't know what I am talking about. Fine, but I kept insisting they call my insurance because they would clearly know whether or not they would cover my medication, but that never happened. So rather than do the job they are paid to do I spent the first few days frantically trying to prove something that I knew for certain, but nobody would believe me. Grrr. Can you tell I still get fired up about it?
I am now on day 12 of IVs and thankfully my insurance is paying for them.... just like I knew they would!
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