What do you do when they tell you…


.. that you have a terminal illness? Why, you go out and buy a dress! No, really. I did buy a dress!

I finally broke down and bought myself the dress I’ve been salivating over for months now. You can see the picture of it right here, and it’s gorgeous and I’m going to feel gorgeous in it, and screw the cost–I’m worth it! Okay, I don’t usually indulge like that, but I did need a nice dress to wear to an event thingy, and this can be a tax deduction and…. I’m justifying, but still, isn’t it gorgeous?

What Terminal Illness Means

As for the terminal illness part, I’ve learned some more since my last blog post. First, terminal doesn’t mean tomorrow. In fact, to be precise, terminal illness simply means that you have a condition and that you are expected to die from that condition, or from complications related to that condition, but there is no determination on when that will be. So it means, even if I live another 20-30 years, provided I don’t get hit by a bus or struck by lightning, I am expected to die from this condition. But no one, not even my own doctors, are going to be able to say how long from now that will be.

So I turned to research to find out for myself. There has NOT been a lot of research done on this CTEPH. The studies from the past have shown that fewer than 10-20% of people with a mean pulmonary artery pressure over 50 survive more than two years post diagnosis. My pulmonary artery pressure in 2011 was 55-60, estimated by echocardiogram. I say estimated, because the only way to know the exact pressure is by right-heart catheterization, which they have not done on me yet. So echocardiogram is a non-invasive way of determining the pressure, but it’s only an approximate. That’s why it’s between 55-60, because it’s not a definite number. It is, however, really close to the right pressure. Normal is anything below 25. 55-60 is pretty high.

The stats don’t look good. And yet, I’m one year after diagnosis this month, and I’m doing better than anyone medically expected. The doctors were clearly talking about things we would do in two-years’ time, so they totally expect I’ll be alive, kicking and doing okay in two years. Also, with new treatments, they have found that people are surviving much longer with CTEPH without the surgery than ever before.

That all said, it’s not all roses and optimism. It’s a serious condition and I AM very sick. I do have episodes of flares where symptoms worsen, and I am more susceptible to injury, illness and more. Every hospital stay presumably reduces the length of my life. I’m doing my best to stay as healthy and well as possible. I plan to beat the odds, sustain my life and health until I am able to qualify for the ‘cure’ surgery, afford the ‘cure’ surgery, and/or until they find an easier way to ‘cure’ the condition.

About the ‘Cure’ Surgery

Second, I said only 3500 of these surgeries were performed per year–and I was wrong. Only about 5000 of them have been done, TOTAL, across the globe. That puts it in an entirely different perspective on it for me. This surgery is quite extensive. You can read more about it on my blog here, in layman’s terms. But seriously, this is scary surgery stuff. I’m terrified of the surgery but at the same time, I’m terrified I won’t qualify for the surgery. And even if I do qualify for the surgery, I’m terrified the one thing that could potentially save my life and cure me won’t be something I can afford.

The Cost of Being Sick

To give you an idea of medical costs for me right now: I did not have medical insurance when I became ill. After my hospital stay in 2007, getting insurance became impossible either because no one will cover me or if they do cover me, the cost is prohibitive. By prohibitive, the cost for the Texas State Risk Pool came back quoted at about $970 per month, and that would still have a $5,000.00 deductible, and would only pay 80/20 prior to that part It also has caps. Yes, some things will change with Obamacare, but for now, this is where I am.

So this year, for 2012, we are in September. Total medical costs, including the three months I qualified for Medicaid at the very beginning of the year, my medical expenses have exceeded $43,000.00USD. My out of pocket expenses so far have been around $27,000.00. I did some figuring last night when I was applying to a pharmaceutical company for assistance with a new medication I’d like to try. Our out-of-pocket expenses for just my medical stuff has averaged about $2860 per month for the first 9-months of this year. That cost will continue to rise as I have the VQ scan, a new echocardiogram, and another sleep study to do all before the end of the year, and if I can come up with the money, I need a full-spine MRI as well. VQ scan is $2300, echocardiogram is $750, sleep study is $1875, and full-spine MRI is $1800. And these are the negotiated DOWN cash-pay prices.

That’ll bring my month average cost of medical care this year to close to $3000, with my currently scheduled doc appointments, and that is assuming I have no additional health issues.

Some people have condemned those who receive Social Security Disability–but I get it. I get it because I can’t work like I used to. Anyone who knows me knows that’s true. My income has reduced so much, I’m not contributing anything to help with my family bills, much less cover any medical stuff. My social security payments, which didn’t start until February and they wouldn’t back pay me more than two months pay, are less than $900 per month. This is in part because I was self-employed for so long, so I had no employer matching and in part because I worked for the government for a few years when I was at my highest salary, and they didn’t pay into SSDI. So I don’t get much. It helps, but it doesn’t even cover my basic medical expenses each month. Even taking that into consideration and putting 100% of it toward medical expenses, I’m still $2,000 out of pocket for my family.

That’s excessive. Some people don’t even make that much per month, and we’re having to find a way to pay that much consistently. And they want me to come up with a million dollars to have the surgery and recovery in about two year’s time. Yeah, that’s not going to happen.

And yet, I know, somehow, we’re going to find a way to have this surgery. I know it.

MEDICARE & Medical Costs

In a year 1/2, I’ll be eligible for Medicare. Sometimes, though from what I’m reading not always, Medicare will pay for part of this surgery. I’ll still have to pay part too. My part will still be high, but it will be much lower than a million dollars. So in a way, it’s good they are waiting to consider the surgery until two years from now. It’ll give us time to get Medicare and save up some money to pay for stuff. What Medicare WILL NOT pay for is the living expenses of my family. I will have to go to San Diego for the surgery. Three weeks will be in the ICU and at least two to three weeks in a regular room for recovery. That is 5-6 weeks of my family having to pay for staying in San Diego. They are going to try to get on the wait list for the$30 per night ‘house’ that is for people who are family members of those who have to stay in the hospital for more than 3-5 days. It’s usually reserved for cancer treatment patients, but CTEPH patients and family members qualify too. That will help some, but it’s going to cost for other things too.

We’ll need the travel costs, and I’ll have to drive there, since PH patients can’t fly easily–taking oxygen on the plane is a tough thing, and some PH patients can’t breathe in the pressurized cabins. Also, PEs are sometimes (though rarely) caused by air travel and being cooped up in the plane, and since CTEPH is caused by PEs, it’s probably best not to tempt fate. Plus, travel in a vehicle would actually probably be more comfortable for me at this point anyway. Ryan suggested an RV rental, so I could lay down, stretch out, stand up, etc, if I needed. It’s a great idea, but they cost about $120 per day, and we’d need it for about three days each way.

Then there’s food, and my out patient time, and the medication I’ll need out patient, and incidentals, and blah blah blah… thousands of buckeroos, for sure.

So these things are on my mind too.

We Can’t Know Everything

The hard part for me right now is the ‘not knowing’. I thrive on information, facts, stats, figures, numbers, reports, essays, research. The problem is, there’s almost no research that is recent about CTEPH. The majority of research is from 2008, which by medical terms means it’s ancient. I am trying to find real people who are diagnosed with CTEPH who have not had the surgery and have lived for a long time after, but I have been unable to find that. On the PH site, it seems almost all of the people have either had the surgery or are scheduled to have the surgery. My doctors haven’t even discussed it with me. They indicated they would address surgery in a couple of years. I don’t understand that. Especially since my doctor is one of the leading PH doctors in the area.

So for now, I sit and wait and wonder and read and worry–and try to think positively about everything. I rant and rave and discuss and write, write, write about it. Because that’s what I do. That’s who I am. That’s how it goes.

One step at a time, on appointment at a time, one day at a time… and that’s how I live now. One day at a time. Sometimes, one breath at a time.

I know many of you are dealing with illnesses, chronic diseases, pain, suffering… know that I keep you in my thoughts, my positive energies and my prayers. Together, may we all find healing, whatever that word means to each of us. For those who are healthy, please send out gratitude to God or the universe or even just to yourself for your health and please consider altering your lifestyle in order to stay that way–food is medicine or poison, so use it accordingly, be active, reduce stress, get plenty of sleep. All these things matter. Trust me, I know.

I love you all.

Love and stuff,



PS: Those who have asked how to help, please know that when we know for sure that I’m a candidate for the surgery, we’ll set up a medical trust fund with the bank, for deposit only, and will let folks make donations. I want a verified fund with a bank, so folks know things are all legit and stuff. As for how you can help now? Buy my books at Amazon.com. It helps me make money. Review them too, because that helps others know what you think of them and they can make decisions to buy them too. I don’t want glowing reviews if you don’t think it’s a glowing review worthy book–honest reviews from honest readers will sell books too–and I have faith in my work that I think the majority of people will enjoy it. Please consider leaving a review if you’ve read my works. If you haven’t read my works, check ’em out! Here’s the link to CELESTE, and if you want to buy others, just click on my name on that page to see the rest.



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One Response to “What do you do when they tell you…”

  1. Hey Michy, thanks for the update. I’m always keeping you in my prayers and thoughts, and I really believe that you’re going to beat the odds. You’re just an amazing lady, and amazing people have to beat the odds (who else would?)! As for the dress, I’m sure you will look gorgeous in it (even though I can’t find a photo of it here?). 🙂

    As for the medical bills, there are already writers rooting for you (we are family over at AWF, you know, and you help out family). An Unexpected Turn has already been approved for Smashwords Premium catalogue, is up on Smash and Amazon…and all royalties will be donated to help you cover your medical bills and save up money! That’s right, I’ll donate every single cent I’ll make of this book, since our Michy here is a valued friend and mentor <3 http://www.amazon.com/An-Unexpected-Turn-ebook/dp/B009AIETLY/ref=sr_1_3?ie=UTF8&qid=1347635423&sr=8-3&keywords=an+unexpected+turn

    Love and hugs,

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