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How to Help

As I mentioned on some of the other pages, CTEPH is one of the rarest conditions one can have, but there’s a good and bad to it–there is a potential cure for some people. I am currently NOT eligible for this life-saving surgery, for multiple reasons. At some point, there comes a time when I might be eligible for that surgery. We won’t know for a while. Right now, my health is not stable enough to even consider it. The surgery is quite extensive, requires full heart/lung bypass (cardiopulmonary bypass), and putting me into hypothermia to perform this. The surgery is approximately 10-12 hours long, and it has a pretty high mortality rate. But if you survive it, you’re essentially (at least most people are) cured, and can lead a relatively normal life, if you can live with the scar from your chest being cracked open from neck to belly button, can survive the 2-5 day medical coma they keep you in while you’re ventilated and duiressed. Lovely surgery, lovely cure, but it is a cure.

I’m actually not healthy enough right now to be able to survive the surgery, so they won’t even do the testing to see if I’m eligible. But as I get more stable, get the fluid overload off me, get my heart to beating right again (or in my case, to not being too much), then I might be eligible. Else, I’ll wait until it’s a matter of I’m going to die with or without the surgery, so why not try it. Either/or.

The surgery, however, costs about a million bucks… and I’d have to go to San Francisco for it, which is more money for traveling and the family. When that happens, if I get the okay to go ahead with the surgery, we’ll totally be taking donations to save up as much as we can for saving my life.

Until then, I am not currently setting up any fundraisers or donation stuff at this time.

MONTHLY MEDICAL EXPENSES

My monthly medical expenses for 2011 averaged out to about $1700 per month. My monthly medical expenses for 2012 averaged out to about $3200 per month. These are out-of-pocket expenses. This is no including what my insurance plan covered, which wasn’t much, because insurance sucked, and it wasn’t including what Medicaid covered when they briefly covered me for three months after my first hospital stay. I have no insurance at this time. I pay cash for all my medical services and all my medication. I have some discount savings cards, get some meds though assistance programs through the drug companies, and have some nice folks at the DME who help me out with loaners and freebies when they can. The kindness of strangers and friends has been amazing.

Even so, my medication alone is about $240 on average every month. When we remove the hospital bills from the equation, my basic, monthly medical expenses, that is, the money I must put out every month, if nothing at all out of the ordinary happens, is about $980 per month, and if anything else happens, like an infection, an injury, or a worsening of symptoms, it’s easily well over $1200 per month. That’s a lot of money every month, but we’ve so far been managing–it’s super tight to try to pay the mortgage, the bills, a kid in college/high school, helping out a floundering adult child, raising my furry babies, and still managing to put food in our mouths. I have help, but I’d be lying if I said we’re not struggling with all this.

SO BUY MY BOOKS, SUPPORT WRITERS

So how you can help right now is by sharing my books and my writings and buying my stuff to read. You get something good, I get more sales and money, and I’m building a solid sales track record that benefits me with publishers, agents and editors. It helps more readers find my works, which can potentially bring in more money. I can use all the help in that area I can get. You can find my Amazon.com page here. These are quality ebooks here, professionally edited by multiple editors, quality cover art commissioned, and stories I’ve put a lot of time, attention and love into. I hope you will enjoy them.

Any of the Kindle books will help me out. Reviews benefit writers, so always try to leave a thoughtful, honest review. Even if you can’t leave a positive one, reviews that are honest and thoughtful should always be appreciated from a real writer who wants to make a mark in the publishing world. Consider leaving reviews for all the books you read. It helps more than you know.

THE WRITERS FORUM

You can visit Accentuate Writers, and while there, sign up to join us if you’re a writer. It’s a free writers forum, and we’d love to have you. I own and manage the forum and have for about seven years now, which is pretty amazing to me. I love it there, love the people there, consider some of them good friends, and I know there are some talented writers there too. Stop by and say hey. There’s a donation button at the top that goes to my PayPal that helps offset the cost of running that site. It takes time, love, dedication and money to keep a site like that running, and donations are the only way we raise money besides some of the on-site advertising, which is limited. Don’t ever think a donation is too small to matter. Think about it: There are 2000 members on that forum. If everyone gave just one dollar per month, that would be $2000 per month, and that goes a long way to hosting fees, times, maintenance, development of new tools and spam guards and more. It adds up. If you like any of the Amazon.com stuff there, just click on the banners to buy, and the site gets a little bit of the sale, but you don’t pay any extra. Win/win.

PULMONARY HYPERTENSION ASSOCIATION DONATIONS

You can also check out the PHA site, and make donations to them to help fund research, awareness, assistance and promote and help those who suffer with this dreaded affliction like I do.

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© 2012 - All Rights Reserved by Michelle Devon