Y is for Yay!


medicare_card_largerWell, I finally got the paperwork in the mail. It’s official: Come November 1, I will have insurance. Medicare, to be exact. After all these years of struggling to make ends meet, to pay for hundreds of dollars of medication each month (minimum is about $250 and usually around $450 monthly just for meds and oxygen), and at least another $600 per month in doctor’s visits, I’m finally going to have some help paying those bills. My average monthly cost for 2013 has been $2200 per month, which is down from 2012, at $2800 per month. Who ever said I was cheap?

It’s more than that, though. There are tests I’ve needed, medications that might make me feel better and improve my quality of life, and doctor’s appointments I needed to go to but didn’t want to have to pay for… insurance means an end to that. It means I’ll be able to get the tests I need to get the diagnoses that allude us. It means I’ll get the drugs that can make me feel better and improve my quality of life. It means I can go to the doctor when I need to not just when I feel I can afford to do it. It means a lot of good things. Mostly, it means choice. I get choices now, instead of choices being made for me.

I don’t imagine for one minute this is a cure all for anything and it’s not going to fix the problems I’ve had in the medical arena, but it’s going to improve some of my biggest complaints. It’s been hard to even get into some doctor’s offices because they won’t even schedule you as a patient if you don’t have insurance. I have that now–but I won’t be going to those doctors. Some doctor will get my business, but not any doc who refused to see me because I was uninsured. I’m lucky. I live in Houston/Galveston where we have tons of medical services, some of the best in the country, dare I say in the world for some things, and I have choice. I know not everyone does.

One of the reasons I chose to move here back a few years ago was because of the medical community here. Back home in the desert of West Texas, we didn’t have much to choose from. My best friend took me to a few docs here, and the level of care and the ability to refer me here blew me away compared to back home,, so that part’s good.

Now, with Medicare to back me up, I’ll be able to get treatment that I’ve postponed, diagnoses that have been delayed due to an inability to get treatment, and to also check out some of what’s been worrying my docs but they haven’t done the testing on because I was cash pay.

I need a spiral CT with PE protocol, I need a chest CT for the mass that is displacing my trachea, I need a full-spine MRI. I need to see a neurologist, dermatologist and ENT. I will likely need a head CT for the ENT. I need to have another V/Q scan and they are going to want me to do a right-heart cathertization. I need another echocardiogram and a full heart stress test. The total cost for all of this? Well, it’s well over $15,000, and that’s just the equipment tests. I need another ABG, full blood work diagnostic exams, another ACTH stimulation test, ad nerve conduction test, and more. I’ll end up being a pincushion and probably feel like a crash test dummy when they are done with me. I’m actually considering asking them to admit me into the hospital as inpatient and let me just get pushed around in the bed everywhere I need to go. Seriously, I’m not joking. Some of these tests will be brutal.

I also have to have some surgeries… hopefully, just one, but at least one, and maybe two. I’m not looking forward to them, because, let’s face it, who does? But I am looking forward to the results of them. Because I’m on coumadin (a blood thinner), I have to be admitted to the hospital two to three days before the surgery, taken off the coumadin and put on heparin. Then, after the surgery, I have to come off the heparin and be titrated on the coumadin again. So even a minor surgery will put me in the hospital anywhere from five to seven days, without any complications. Crazy. The PH makes surgery dangerous too-and intubation with a displaced trachea and with the PH might prove dangerous–we’ll see what happens.

I’m both scared and excited though… okay, terrified, but grateful and excited. There is a chance, just a chance, life could improve, drastically. This might even get me one step closer to qualifying for the CTEPH PTE surgery that can cure me and save my life.

All because of a tiny little piece of paper that says I have medicare.

Crazy world.

Love and stuff,




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3 Responses to “Y is for Yay!”

  1. Cindy says:

    SO happy for you. Not glad you have to do the tests, but for the ability to have them.

  2. Yes! Love this a million times. It is amazing what good care can do, no matter what the diagnosis.

    I think it is a good idea to go into the hospital if you can. My doc asked me to do it one time so she could be sure I would get all the chest xrays and other tests I needed right away.

  3. Derek Odom says:

    That’s awesome! I hope the surgery (praying for just one) goes well. I’m waiting for Obamacare. 😀

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