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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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Check out these links!

  • Shalon's blog
  • Shalon's Website

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Cyndi's AVM journey

Check out my Pictures at the bottom of the page!

I Made It!

Sunday, January 30, 2011

Hi Everyone! How are you? I just had to make the announcement of making it through the entire work week after my procedure! Whew! Wasn't always easy! There were a couple of times I contemplated calling in sick or going home @ noon because I wanted to just be in bed, but I stuck it out knowing I could make it those last 4 hours of the day! I was discussing the recent story on American Idol with someone, of the couple that was newly engaged, then the girl is in a car accident 2 months before the wedding and is essentially a vegetable now and the young man says, "What kind of man would I be if I left her now"? Wow - I told Mark I agreed, but I also had to agree when Mark said, "Yeah, but she isn't the same person he proposed to". So I go on to tell this person I'm talking to that even though I'm functioning throughout my day, that doesn't mean I feel well enough to be working or doing anything other than being home resting and recovering! This past procedure just took it out of me and I was not feeling myself until the early hours of the morning after the embolization! It is so tough, to get up in the morning for work, when I've been up several times during the night due to medication keeping me awake, restlessness, anxiety, pain .... unfortunately, I bother Mark without meaning to and poor thing, he needs his rest to function @ work too! Every time I get up, I have an entourage that follows me to the bathroom - yeah, Hanz and Bella have to see what Mommy is up to! Actually, there are times that Bella stays asleep, but since we want to make sure she doesn't wee wee on the bed, I pick her up and take her to the pee pad when she is more asleep than awake until she does her duty and gets a treat! Big brother Hanz is right there waiting for a treat too! I am totally out of vacation and sick leave @ work, otherwise I would definitely stay home when I'm not feeling my best! Seems everyone has been passing that crud around, and it was finally my turn to get it! All I needed after having my embolization right? I called my sister Celia to ask her opinion on what to do and she said to call my PCP right away, which I did. He called in a z-pack for me and that really helped!
I was recently asked to look in on someone that had a trache put in a couple months ago, an older lady in her early 60's - to see if there was anything I could do to help. The first thing that became clear to me, is that most of her family is not there for her! Seems only the person that asked me to look in on her cared enough to make that move - but the patient needs to be THE MOST IMPORTANT person is this equation! She is going through something very severe and needs as much comfort as possible! I am so grateful to my family that inquires on any way to help me. Mark especially puts up with all my needs besides his own, the household needs and the furry kids needs! Today, Mark fixed breakfast, worked on the retiling of the kitchen floor, took us all to Petsmart, took the dogs for a walk in the neighborhood, came in and fixed dinner, and gave the dogs a bath! Wow! I really need to emphasize that Mark also has to deal with me under the influence of steroids, which means I am always h-u-n-g-r-y, and having hot flashes! To boot, I'm also trying to keep my pain under control and that does not always make me a happy camper! Not to mention the narcotics making me drowsy, so I really need a 2 hour nap when get home from work! Is my husband an angel or what? Actually, Hanz is Mommy's Angel and right now Bella is being a little monster, but she's only 4 months, so we're gonna cut her some slack because she's a very cute baby! Ok, I've gotta go before I fall asleep here! Ciao!

Cyndi

Ok, I just got an e-mail from Sadie, the Patient Coordinator for Dr. Yakes and she says there will be no debulking in March as Dr. Hepworth had hoped. Fine by me! If it isn't time for that, then it isn't time - I trust that the doctors know what is best for me! So, it will be a routine embolization for me in March! Stay tuned for the latest and I hope to pop in a photo or two in here of us w/our babies when possible! Weighed both kids @ Petsmart and Bella is @ 10.2 lbs and Hanz weighed in @ 13.2 lbs! Yikes!

Posted by Dulce at 11:36 PM  

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