Friday, July 18, 2008

3 year cocci anniversary, hearing aids

Today, July 18, is the 3 year anniversary of the start of Denise's struggle with cocci. So I thought that this would be a great time to finally post an update to share all the good news.

In February Denise did a photo shoot for Edwards Lifesciences Corp. They made a cardiac device that helped her tremendously. One of the CCU nurses at Arcadia Methodist saw the device in action, then went to work for Edwards, and called us to see if Edwards could use Denise's story in their annual stockholder report. The story behind this photo is that the kids were getting squirmy after a while, and the photo crew couldn't get a picture with everyone posed properly at the same time. So at one point I told the kids to cut loose and tackle mommy. They did, and the photographer started clicking pictures. One of those semi-candid shots is the one they used. They put Denise's picture on the front cover and the online version even has a bit about her that didn't make it into the printed report (click here). A note about the doctor on the page with Denise in the online report: Dr. Rogove, D.O., F.C.C.M., F.A.C.P. I think that's a string of Latin abbreviations for "Was not one of Denise's doctors, but looks darn spiffy in a suit and is an adroit spokesman for Edwards' products." It's a bummer that photos of Denise's actual doctors aren't there. A bigger bummer is that Dr. Rogove's in Laguna Beach while we're in, well, Duarte. 'Nuff said.

April: My nurse aunt & I attended the Cocci Study Group in San Diego CA, and Denise came along this time, since the conference wasn't held in a cocci-endemic region. Denise got to meet & thank two of the biggest names in cocci research for their work: Dr. Hans Einstein (light suit) and Dr. Demosthenes Pappagianis (dark suit). They've been studying cocci since the 1950s. I need to do some fact checking, but I believe that Dr. Einstein is credited with figuring out an effective way to combat cocci (using amphotericin) in the 1950s and Dr. Pappagianis is credited with publishing his first cocci paper around the same time. So we got to chat with the big-hitters of Valley Fever research, and all I had on me with which to capture the moment was my lousy camera phone. Sigh.
  • The latest titers came back showing undetectable levels of the cocci antibody! The voriconazole is suppressing the cocci nicely. Since that's the case, there's no need for those pesky routine spinal taps. Yay!
  • Her neurologist ramped down the anti-seizure medicine and discontinued it several months ago, and Denise has been doing fine.
  • She recently had an echocardiogram (to check her heart's strength) and an MRI (to check for any advancement of lesions in the brain). We haven't gone to the appointments to hear the results yet, but the cardiac tech told Denise that it was hard to believe that her heart was bad at one point. That was encouraging.
  • Her GI tract is coming back to normal, and ab swelling is going down. Her GI specialist told her that after what she'd been through, it could take her body a couple of years to feel and look "back to normal." Since things are getting better, he took her off of one of the GI-related meds. She's discovered that a little coffee has some of the same benefits.
  • Her vision improvement seems to have stopped some time ago. But she's adapted to mild vision impairment so well that she hardly notices it anymore (until she goes for retinalogist visits). Other than no longer feeling comfortable about driving at night, she's doing nicely. It's wonderful that she's progressed from what she described as a large black field in one eye, to now having some blurriness that she's adapted to.
  • Her hearing improvement also has stopped. The results of her ear exams show no physical problem, so the doctor assumes that the damage the cocci did to the hearing portion of the brain is probably permanent, and recommended getting hearing aids. She's said that in one ear, everything sounds badly muffled, and she's noticed that she can't hear people as well as she was able to before getting sick. There have been many instances wherein she's felt embarassed by either misunderstanding what people have said, or not hearing them at all and coming across as rude because she doesn't respond at all. The problem is multiplied in noisy settings with multiple conversations going on at once. She's teetering back & forth between wanting something completely in the ear (so that nobody notices she's already got hearing problems) and wanting a behind-the-ear hearing aid that's easy for people to notice (so if she doesn't respond properly to other people, they'll get the clue that it's just a hearing problem, not a rudeness problem or a mental problem).
So there you have it. Lots of good news, and no crisis. Thanks for checking in!

9 Comments:

Blogger Suz said...

Thanks for the update! I've been checking every once in a while on your blog. I'm so glad Denise is doing so well!
Love,
Suzanne

July 22, 2008 1:39 PM  
Anonymous Anonymous said...

You all are very specail to us. I am glad that Denise is doing well. My thoughts and prayers are with you all.

Love,
Sandi

July 23, 2008 9:50 PM  
Anonymous Anonymous said...

It is so great that Denise is doing well. We will continue to keep you guys in our prayers! God is awesome!
Love,
Amber, Dean, Rachel, and Reagan Burdi

July 28, 2008 5:46 PM  
Anonymous Rachel Brown said...

I am so happy to hear Denise is doing so much better! Her entire ordeal was so scary... I miss you guys!

July 29, 2008 11:40 PM  
Anonymous Anonymous said...

So glad to hear such a wonderful update! God is good!
Love,
Pam in Maryland

July 31, 2008 5:38 AM  
Anonymous Anonymous said...

Thank you for keeping us updated Mr. Williams. It's a blessing to see your wife smiling and holding her babies. Praise Jesus!
Barbara Phillips, Andy's mom from PCS

August 03, 2008 1:16 AM  
Anonymous Anonymous said...

I'm so glad the reports continue to be good.

November 28, 2008 9:59 AM  
Anonymous Anonymous said...

Denise, you are in a wonderful part of the world for hearing problems. My mother is deaf without hearing aids but she has been going to see the House Medical Group across the street from St Vincents in LA. They are wonderful and some of the best!

Jamie

January 09, 2009 5:57 PM  
Anonymous Anonymous said...

Hi there. I am currently writing a reasearch paper on Valley Fever and remembered that one of my best friends sister had battled this infection and survived to tell her story. Hi Denise it's Marlena Nikis friend. Thank you for sharing your story. Your blog has really helped me out. I am so glad to see you are doing well and still fighting on.

March 22, 2009 4:09 PM  

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