Hi-ho, hi-ho, to the hospital I go!
Honestly, the last few months have been difficult on multiple levels. Let’s start with the bureaucratic mess. Over the summer, Cigna sent me a lovely letter saying Oops! They started my disability payments 3 months early, and overpaid me a couple more times in the following months, please send back almost $4,000, thanks! After some haggling, they started withholding $200 from my monthly check until the balance is paid off. At around the same time, I found out that my Medicaid coverage was ending as my monthly disability income is too high. I thought I could get on a different Medicaid program with higher income limits for people with disabilities, but they require 10 working hours per week, which I can’t reliably or consistently commit to. So I sorted through Healthcare Marketplace plans, none of which actually provide adequate coverage for my extensive, expensive medical needs. Eventually I settled on one that covered my CF clinic in Philly, had a mostly affordable premium, and had an out-of-pocket max that wouldn’t completely break the bank. And then 2 months later I got to do it all over again, because the plan I selected won’t be available in 2017. Isn’t being an adult fun??
Aside from that, my health has been kind of hovering on the edge ever since the summer. Though the IV hydration helped briefly, my pulmonary function numbers started dropping again as soon as the hydration ended. Aside from the frustration of trying to push through low endurance and low energy month after month, it was also frightening knowing that I was basically a sitting duck, and one tiny respiratory infection would likely be enough to trash my lungs and land me in the hospital. By the end of October, my numbers had dropped below where they were when I went on IV hydration in July.
And that’s when the next headache started.
I love my doctor. He’s been treating CF forever. I first started seeing him when I was a teenager (and he wasn’t young then!). He’s quirky and funny and knows his stuff. He also, frequently, drives me completely insane. We’ve had many arguments about my treatment over the years, usually ending with both of us frustrated, sometimes with me in tears. He uses antibiotics sparingly, and prefers to focus on long-term lifestyle changes, mostly involving reducing and controlling my cough to prevent ongoing damage to my body. The wait-and-see method and only pulling out antibiotics as a last resort has mostly worked for me over the years, but less so since my health has deteriorated. I finally reached my breaking point in October, when my numbers were so low, yet he didn’t discuss them or suggest any treatment, and instead spent the whole appointment lecturing me about my cough. After sitting on it for a few more weeks, I finally decided it was time to try something different, and scheduled an appointment with one of the other doctors in the clinic.
It was a tough decision, but I think it’s the right one. I’m ready for a fresh perspective and more aggressive treatment. I know I’ll never get back to where I was prior to 2014, but I do think I can feel better than I have these last few months. So I’m going inpatient for a few days to get started on IV antibiotics, and then will be finishing out a 10-14 day course of treatment at home. And hopefully soon I’ll feel better than I have in a long time!
Honestly, the last few months have been difficult on multiple levels. Let’s start with the bureaucratic mess. Over the summer, Cigna sent me a lovely letter saying Oops! They started my disability payments 3 months early, and overpaid me a couple more times in the following months, please send back almost $4,000, thanks! After some haggling, they started withholding $200 from my monthly check until the balance is paid off. At around the same time, I found out that my Medicaid coverage was ending as my monthly disability income is too high. I thought I could get on a different Medicaid program with higher income limits for people with disabilities, but they require 10 working hours per week, which I can’t reliably or consistently commit to. So I sorted through Healthcare Marketplace plans, none of which actually provide adequate coverage for my extensive, expensive medical needs. Eventually I settled on one that covered my CF clinic in Philly, had a mostly affordable premium, and had an out-of-pocket max that wouldn’t completely break the bank. And then 2 months later I got to do it all over again, because the plan I selected won’t be available in 2017. Isn’t being an adult fun??
Aside from that, my health has been kind of hovering on the edge ever since the summer. Though the IV hydration helped briefly, my pulmonary function numbers started dropping again as soon as the hydration ended. Aside from the frustration of trying to push through low endurance and low energy month after month, it was also frightening knowing that I was basically a sitting duck, and one tiny respiratory infection would likely be enough to trash my lungs and land me in the hospital. By the end of October, my numbers had dropped below where they were when I went on IV hydration in July.
And that’s when the next headache started.
I love my doctor. He’s been treating CF forever. I first started seeing him when I was a teenager (and he wasn’t young then!). He’s quirky and funny and knows his stuff. He also, frequently, drives me completely insane. We’ve had many arguments about my treatment over the years, usually ending with both of us frustrated, sometimes with me in tears. He uses antibiotics sparingly, and prefers to focus on long-term lifestyle changes, mostly involving reducing and controlling my cough to prevent ongoing damage to my body. The wait-and-see method and only pulling out antibiotics as a last resort has mostly worked for me over the years, but less so since my health has deteriorated. I finally reached my breaking point in October, when my numbers were so low, yet he didn’t discuss them or suggest any treatment, and instead spent the whole appointment lecturing me about my cough. After sitting on it for a few more weeks, I finally decided it was time to try something different, and scheduled an appointment with one of the other doctors in the clinic.
It was a tough decision, but I think it’s the right one. I’m ready for a fresh perspective and more aggressive treatment. I know I’ll never get back to where I was prior to 2014, but I do think I can feel better than I have these last few months. So I’m going inpatient for a few days to get started on IV antibiotics, and then will be finishing out a 10-14 day course of treatment at home. And hopefully soon I’ll feel better than I have in a long time!
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