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About me

Dulce
From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body". I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!
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Cyndi's AVM journey

Check out my Pictures at the bottom of the page!

Post January Denver Trip

Sunday, January 29, 2012

Hi Family and Friends! How is everyone?! I'm super excited to tell you that for once in a very long time, I'm actually feeling half way human so soon after a procedure. Seems the last few embolizations found me with complications that were making my recovery extremely difficult, but this time has been much better! I still have good and bad days - still some weakness in the legs, but able to function without being so completely dependant on everyone around me!
When I arrive @ work, I always park in a handicapp spot and need that ramp to pull my "cart" that is full of my meds, snacks or anything I need that can make my life easier while I'm @ work! Unfortunately, when a friend joins me for lunch, we sometimes go back in the building through the back enterance and that means climbing 4 steps up to the door - ouch! Steps down aren't too bad, but going up is still a challenge for me right now. My primary care doctor here says that is caused by all the pain pills and what I'm going through.
Had some lab work done earlier this week, and my potassium level is good now. Unfortunately, since I was concentrating on that, I was neglecting my iron tablets - I'm anemic. Plus gotta remember to take calcium too, since being on those steroids all the time affects the bone density. Had a test for that not too long ago and it was ok.
Plus, there's always the fun of having to sleep w/that darned humidifier on my trache - if I cough during the night, I sometimes wake up w/phlegm on the cup cover on it or even on my chest. Grossss! I know, I just like sharing my experiences with you - I've definitely had it worse, but it sure isn't your basic nights sleep around here either! Right now I'm having the battle between the steroids and the Xanex! The steroids I'm decreasing by 5mg every third day (that helps w/the swelling after a procedure), but they wind me up, where I sometimes find it hard to relax enough to go to sleep. That means having to take a Xanex to take the edge off and relax. Course sometimes taking a pain killer makes me drowsy, but luckily, I don't have to take too many of those @ this point! I'm actually trying a new blood pressure medication - as the one I was taking contained a diuretic and Dr. Yakes staff in CO, felt that was contributing to lowering my postassium level. Whew! If it's not one thing it's another! I'd better get back to bed to read or watch TV until the meds kick in! It's 4:30 a.m. and I had gotten up because it was a little too warm in here when I set the temperature @ 74 degrees! We don't like it cold out here in S. Texas!
I'll try and include some new photos here soon! Love to all!
Cyndi

8:00 a.m. Well, I sure know how to jinx things! Had headed back to bed and was happy to see one of my favorite movies had just started - Legends of the Fall, so I settled in to watch that. Woke up a couple hours later to find I had a blob of blood on my lip. Darn! After further investigation, I saw the blood had actually already made it down to my top sheet - poopie! Luckily, I didn't have what I call a "gusher of a bleed", but it was enough to disappoint me darn it all! I just hope and pray that there won't be any more episodes. I know this happened before and after speaking with Kelly, Dr. Yakes physician asst., she said it could be from the "alcohol" still settleing in, or whatever work was done in that area. Hmmmm...... please keep the prayers coming. We need all of you with us on this journey. Thanks.

Posted by Dulce at 4:38 AM  

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