For those of you that aren't already following Kelly's public facebook page, you can see all of her updates, photos, and videos on the progression of her surgery and condition. Just visit Share This Update!
Kelly is doing wonderfully. The surgery was a great success and her wounds are healing well. They had to do a little more surgery on her than orignially expected. They did a decompression on her where they cut a whole out of the bottom/back of her skull to allow better flow of fluids and release the pressure in her head. Also her skull was fused along with her c1/c2. Here is Kelly's latest update that she posted to her public facebook page:
Many of you have been asking how I am doing and I've been slacking on my updates. I apologize for the delays.
I am doing WONDERFULLY!!! I can't believe how much I have improved in just a month. I feel amazing. I can't believe I put the idea of surgery off for so long. My life has already changed for the better. I have been weening myself off of my neck brace. I now can go hours without it as long as I'm sitting in my chair. I can get up and walk around holding my head high. I can't explain to you how much better I feel without all that pressure in my head, sensitivity in my eyes and ears, and pain and swelling in my neck. I haven't had any paralysis since my surgery. My left arm and hand are already gaining strength and coordination back. I used to feel like I had constant brain fog. Like I was in another world. Almost like I was constantly being pulled or pushed down into the ground. I felt like walls and everything were always moving around me, but not anymore. I haven't passed out and I have only had one migraine since the surgery.
Here's the thing, there were so many horrible symptoms that I was dealing with 24/7. A lot of them are unexplainable, so it was easier to just explain everything as "pain". I get people asking me all the time if my pain is better, but I wish I could put into words how much more there is than pain. Yes, I was in extreme pain, but I have always been in pain and will continue to be in pain my entire life. I have a severe case of Ehlers-Danlos Syndrome Hypermobility, so pain is a part of my normal life. Dealing with just pain was the easy part. It's all the other symptoms that made my life so hard to live. A huge list of hard to describe symptoms. Yes, the additional pain was a part of it, but losing control of my own body was much worse than pain. I have dislocated almost everything in my body, but that is nothing compared to constant brain/spine damage.
I felt immediate relief of pressure in my head after the surgery. Lying in the hospital I was in so much pain from the surgery it's self. Yet, I felt better than I have in years. So if I feel better just after a major surgery like that, maybe you can imagine how horrible I felt prior to the surgery.
As for me right now, my wounds are healing very well. My posture is better and my neck is straighter. No, my neck doesn't hold it's self up. It wasn't a magical surgery. That's why I need to build my muscles again with PT. I would be walking more right now for exercise and strength but can't. My hip went out on me and now I'm struggling with that. It's my right hip and that's the same side that my bone graph was taken from too. So I have double the pain in my hip. My doctor wrote a script for me to get therapy on my hip as well, but I'm waiting on my insurance to approve it still. So I am still healing very well but the process is slowed down a little because of my right hip going out. I still have been trying to walk but it's really painful and I have a bad limp. At this point, physical therapy is what I'm looking forward to."
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Just wanted to update you. Kelly is safe and sound in Maryland, sleeping in her hotel room. She couldn't use her legs to get off the plane again. They had to bring a special isle chair to get her off safely. The flights were actually fairly smooth this time with patches of turbulence. Even with how sick Kelly was, she still manage to take pictures. They will be posted when she wakes up. Later today a photographer from The Washington Post will be coming by to meet Kelly and take photos as well. I don't know how she is managing with all this, but somehow she's toughing it out.
Kelly has to be at Doctors Community Hospital in Lanham, Maryland at 5:30am (Eastern time) tomorrow morning. That's 2:30am for all of you West Coast people. Her surgery is scheduled for 7:30am for up to 4 hours but it should only be about 2 hours. We will continue to keep you all posted.
We've reached our goal!!!Share This Update!
This is so wonderful. We reached our goal and sooner than expected. You are all so amazing and thank you so very much for all of your generous contributions not matter how large or small. A huge thanks to Coatings Unlimited! We appreciate everyone of you. Technically we are over our limit because we were going to put in an offline hotel donation from Kelly's Uncle Rob. We will still post updates on Kelly's surgery. Don't forget to follow her on her on her public Facebook page at https://facebook.com/KellyKoepandEDS where you will find updates, photos, and videos. Thank you, bless you all and have a very Merry Christmas and a Happy New Year!!!
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You bring Kelly to tears
It is amazing all of the family, friends, and even strangers who have been coming together to help us out. It is hard to put into words how much this means.
Kelly hasn't been feeling very well the past few days. She has been doing nothing but sleep. She says she doesn't feel like she is coming down with anything, so that's good. We need her as healthy as she can be for the surgery.
A couple days ago our local newspaper, The Daily Courier, was here interviewing Kelly. They spent a couple hours with her and they are expecting to put it in the Sunday paper. For those of you that didn't know, The Washington Post will also be doing a story on Ksilly and her surgery while she is out there.
We will be sure to keep you all updated as the days get closer. If you are on Facebook please add Kelly's page. There will be photos, videos and updates following Kelly. You can do a search for "Kelly Koep and EDS" or you can go to:
We appreciate you all and Kelly will want to thank you personally. YouCaring doesn't have an option for us to respond to your indavidual comments but just know that we are seeing them all and you have brought Kelly to tears. Don't forget to email her your mailing addresses so she can send you a copy of her homade Christmas cards. Her email is Kelly.Koep@Gmail.com
Sending Checks...Share This Update!
If you would like to mail a check, you can do so and we will update your donation by putting it in manually on this site. So anything you send us will show in the amount raised.
You can make the check out to myself, Wendy Koep and mail it to:
151 Wagon Wheel Dr.
Grants Pass, OR 97527
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Our local news station, KDRV, aired Kelly's story tonight. The news article can be found here: http://www.kdrv.com/hope-for-local-woman-with-rare-disease/
and the video here: http://www.youtube.com/watch?v=PD1P_cwe8vY
Happy Thanksgiving EveryoneShare This Update!
I am thankful for all of you. You are making my life possible.
I will be going to my grandfather's (Joe) house today. For those of you that know him, he isn't doing very well these days and this will probably be his last Thanksgiving. The both of us don't eat much right now, so we will just being having sandwiches from a deli instead of a turkey. Thanksgiving isn't about the food anyway. It's about the family and I'm lucky I get to spend it with some of mine.
Now go out there, eat until you can't eat anymore, and have the best turkey day ever!
Kelly Koep (JellyBean)
Per Kelly's wishes:Share This Update!
Kelly would like to send a personal thank you card (drawn by her) out to everyone that donates. Feel free to email your name and address to Kelly.Koep@Gmail.com