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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!

August Embolization

Saturday, August 25, 2012



















Hi everyone! I'm going to backpeddle here a bit and include some photos that should have been in my June blog, but didn't make it @ the time! During that visit, I had an appt. w/an ENT to check my airpassages before having an emboloization. Not fun having a hose up the nose! Not painful, but uncomfortable. All clear! Then we arrived @ Swedish and hadn't been there very long when I started having a bleed! You can see Kelly (one of Dr. Yakes P.A.'s has her hair in a ponytail) and her face covered by her hands. She hadn't seen me have a bleed and had asked how I could tell where it was coming from - good question! The nurses rushed in and brought me gauze to pack my mouth! The nurse in the blue scrubs is Jill (hair back) and my Twilight buddy! I kept asking for her this trip and finally got to see her right before we left Swedish!
Ok, so now lets get to the present embolization trip! Mark went with me and I really enjoyed spending quality time together! I had my Nook as usual, and had taken the paperback The Hobbit that Mark ended up reading again as we prepare for the movie to come out! Had a good flight, but by the time we arrived and got our car rental, I missed my scheduled ENT appt.! Next time we'll leave Corpus Christi earlier! Got admitted through Dr. Yakes office, and then since we hadn't had lunch, we got permission to go out and by the time we were due back, my room would be ready! I left it up to Mark to pick a place and he decided on The Cheesecake Factory @ Park Meadows Mall! I was busy looking over the menu for something soft to eat, when Mark heard a guy asking someone sitting in the booth behind us for an autograph. So Mark tells me it's Olympic gold medalist Missy Franklin and I asked, "are you sure"? I'd hate for him to bother someone and it not be her! I handed him my phone and it was Missy and it might have been her little brother that took this photo! She had another girl w/her too. She is tall - 6'1"! We didn't realize until later that Mark was wearing a t-shirt that said TEAM USA and had the Olympic rings on it!
Headed back to Swedish - lots of familiar nurses @ the station ... Dave, Becky, and saw the new tech Alex again! Mark stayed with me in the hospital - big room w/a twin size couch-bed thing for him to sleep on. Got taken to OR the next morning and Mark of course followed my transport over there. Wouldn't you know I started hacking and had a bleed right before moving from the bed I was on to the operating table? UGH! I wasn't familiar w/the anesthesiologist or nurse on schedule - I usually have Quinn or Wendy for anesthesia, but luckily one of the male nurses that is usually there did come over and say hello! Everyone is awesome there, so I know I'm in good hands. As I lay back w/my mouth packed in gauze I asked them to not let me choke on the bleeding please!
I had a few minutes to talk to Dr. Yakes before going under and told him I couldn't take much more of this and could he give me a ball park figure of how much longer?! Told him people seem to doubt this will ever be over with and he said, "It only matters what you and I think and know is happening", or something to that effect. He says maybe another couple years of procedures. Not too bad - I just want the bleeding controlled! That's probably why he hit me with 49 cc's of alcohol! YIKES! The most he had ever used before was like 28 or so; I am surprised I'm not more swollen or having severe pain! Whew!
Next thing I knew, I was back in my hospital room and Mark was bringing me some juice! Had nurse Laura and then Judy - both are great! Respiratory techs came by to check on my trache and supplies, so we had some traffic going. Actually, the evening I was admitted I had an internal medicine specialist and an Infectious Disease doctor come by. Wanted to check on the pseudomonous infection and decided to keep me on antibiotics for another 6 weeks! That's getting old, especially for nurse Mark that gets up an hour early to take one of the IV meds out of the fridge so it can be room temperature when he plugs me in before we get dressed for work!
Our neighbor Shauna took care of our babies while we were gone! On our flight home, a lady with her furry child sat next to me on the plane! She was a good traveler, very well behaved! Saw another passenger w/his Westie - had to go over and say hello! We miss Hanz and Bella so much while we are gone - but they enjoyed playing w/our next door neighbors dogs, Kaleb and Kolby in their fenced in back yard! Here's a photo of Mark and Hanz relaxing on the couch!
Right before I left on this trip, the Fossums were getting home from a week away to spend time with Greg's side of the family! Celia said their hotel was right across the street from the Mall of America and she brought back this perfect gift for us! It says, "all dogs are pets - Brussels Griffons are family"! Thought I would include a current photo of the beautiful Shalon Whitgob, former avm-er! She is waiting for the all clear 6 month period before reconstructive surgery follows after having an avm!
I'm still trying to get my bearings after this trip. Can't help but be wary of having a bleed - so many meals have been interupted as I start eating and then realize blood is dripping down my chin. I feel pretty good right now, trying not to take too many steroids, don't like the side effects. I plan to get back to work on Monday and keep on this journey until we beat it!
Take care y'all - as always, we thank you for your love, prayer and support!
Cyndi

Posted by Dulce at 5:45 PM  

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