Christy's Brain Funding

$2,265 of $10,000 goal

Raised by 28 people in 66 months
In June, my best friend Christy had surgery on her hand and a week later suffered a subdural hematoma, stroke, blood clot, and a nasty batch of complications. She was ultimately diagnosed with a rare brain condition called RCVS. It's rare enough to have no known cause or long term prognosis. Her care and treatment has been ongoing, including nearly two weeks in the hospital and several trips to Salt Lake City for treatment and follow-up tests. Her neurologist does not know when she will be able to return to work. He won't re-assess her for another 2-4 months as she continues to heal. She suffers from constant and often debilitating migraines, aphasia, and ringing ears.

She is also under care for ongoing blood clots in her leg and arm and will likely have to meet with a hematologist for long-term care.

Her beloved position as the Director of TRIO at UMW has been advertised and her insurance is no longer covered.

Making the out of pocket payments for medical insurance payments, prescription co-pays, travel expenses for medical appointments, hospital, doctor, speech therapy and other expenses are adding up and there is no end in sight as treatment continues. In addition, she will have to once again switch insurance and meet those new out-of-pocket and maximum deductibles, for the third time in about 7 months.

So here I am with hat in hand asking for any help you might be willing to give. Anything will help. She and her husband have been doing all they can to reduce expenses and keep body and soul together. Please do what you can and spread the word. I've listed $10,000 as a goal, and I realize that it may take a miracle to get there, but people are generous and wonderful.

Christy has always been a caretaker, looking out for others and shouldering the burdens that others cannot carry. This time she's in need.
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Christy saw the neurologist in mid January and will be returning again in March. For now, they are focusing on trying to pharmaceutically control the migraines while also exploring more holistic methods. Because of the RCVS it won't be an exact science and her Salt Lake doctors feel it will be a lifelong issue. She is unable to take any medications for pain, not even OTC, relying instead on an anti-seizure /anti-migraine prescription. Once a migraine occurs, she is at its mercy and holistic means to reduce it. They generally last anywhere from 2 to 6 days.

She did get new glasses with transition lenses so she's learning to see at all three levels; reading, computer screen and distance with those lenses. With medication changes and as her brain continues to heal her eyes may change so she can expect to have those checked again as soon as needed and check-in at 6 months. The optic nerve was originally impacted but as healing continues she hopes her eyesight will continue to stabilize.

The neurologist did tell her that as far as her hearing goes there is not much to be done. The ringing and hearing loss she has at one year out will be probably be what she will have for life. This was difficult news. She did complete her 6 month Coumadin therapy and with the hematologist and her regular doctor's advice is just keeping her fingers crossed that the decision to stop will be the best one.

There is nothing medically at this point to indicate a reason that she would develop more blood clots. Let us hope it stays that way. She continues with speech therapy where she works on attention, orientation, memory, and executive function issues. In February she'll only go once, but in March she'll get two sessions.

She still does not drive so she is at mercy of her spouse, who must take time off work to drive her. They've exhausted his leave continually to maintain doctor appointments. They've also started on new insurance as of February 1st so they now will have to meet new deductibles AGAIN for the third time in 7 months as they can't make the COBRA payments for insurance.

Healing now is slow; the new neurologist says the initial time is measured by her in the first two years but really after that is a lifetime of recovery. The brain is still such an unknown and RCVS is so rare, no one can say what the journey will be.

Thanks to all for your support. Please continue to spread the word and hopefully we can keep helping Christy and Dow.
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Some of you may be wondering about Christy because if you see her, she looks absolutely fine. It's really hard to associate her appearance with her ongoing struggle. After all, she looks so normal. She's not like a typical stroke victim who is partially paralyzed, or one who has a slurred voice.

The brain injury shows up in a lot of ways. First, terrible headaches and frequent exhaustion. A lot of that is brain exhaustion, which means that she can't find words. She has trouble making conversation or talking sometimes, because either the words won't come, or the wrong words show up. Sometimes she does odd things like put her silverware in the microwave to wash. There's a disconnect there and it's fairly regular. She cannot drive at all, and sometimes all she can do is sit on the couch with no noise and no visual distractions, and let her mind rest. Reading is starting to be something she can do (and we all know how she loves to read) and watching TV or movies can be very difficult because her brain will sometimes just time out and she can't make sense of things.

Sometimes it's all she can do to get up, get the laundry done, and fix a meal.

To help you understand better, here are a couple websites that talk about it. I recommend that you read.

http://www.brainline.org/content/2011/10/if-i-look-so-good-why-do-i-feel-so-bad.html

and

http://www.brainline.org/content/2011/07/lost-found-what-brain-injury-survivors-want-you-to-know.html

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I wanted to let you all have an update on what's going with Christy. Today's medical visits and tests showed blood levels are staying within the required range so she doesn't have to return for those again until after Christmas! However, Christy will have her eyes checked next week. She saw the neuro-opthamalogist in SLC July, who determined there was no permanent damage to her field of vision. The hope now is to get her a new baseline that won't change with prescription medicines in coming months but will give her some relief in clearing her vision and helping with headaches.

In the next 6 weeks she has: several more speech therapy appointments, has her blood checked after the new year, sees the neurologist in mid-January followed by her regular physician in late January at the completion of her 6 month Coumadin treatment for transition to a hematologist or to discuss options all before switching to the new insurance February 1 and starting over with new deductibles again. 7 doctor visits in 6 weeks.

She and Dow and their family thank you for their support. Your kindness and generosity is deeply felt.
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$2,265 of $10,000 goal

Raised by 28 people in 66 months
Created November 27, 2013
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EJ
$50
Erica Jones
63 months ago

Keeping you in our minds and hearts! xo from Financial Aid Ladies

KK
$50
KC Keyes
65 months ago (Monthly Donation)
MK
$50
Michele Keyes
66 months ago
$50
Anonymous
66 months ago
EW
$100
Erlene & Zeke West
66 months ago

We are thankful for what Christy did for our grandson Chase Haight. Wish her the best of recoveries.

ND
$50
Neal & Colleen Davis
66 months ago

Keep fighting Christy! You are in our thoughts & prayers.

$100
Anonymous
66 months ago
GS
$50
Gerad Smith
66 months ago
$100
Anneliese Ripley
66 months ago
MM
$100
Mike and Kristan McGuigan
66 months ago

Christy Keyes! Us here in the Midwest are sorry to hear about the "crap sandwich" that you've been dealing with. The good news is that you are strong, and have the ability to get past this. Stay strong, stay focused, and think positive thoughts every day. Cry when you feel like cryin, laugh when you feel like laughing, and be kind to yourself always. You WILL beat this. Much love to you, Dow, Malcolm , Cool Kate, and the rest of your families.

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