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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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      • Feeling Good!
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Cyndi's AVM journey

Check out my Pictures at the bottom of the page!

Feeling Good!

Saturday, March 20, 2010



Hi to All!

I just wanted to take some time to give you an update and add a few things here and there about our recent trip! I start remembering more as I feel better! Once the "shock" of the entire incident has passed and my pain is under control .... I just wanted to let all of you know that I'm really doing great!

It never seems to fail, that right before one of these trips, I always seem to only get anywhere from 1 - 3 hours sleep the night before! Soon as Celia and I boarded the plane from Dallas to Denver, I was giving in to the sleep I was deprived of! Course I ended up in middle seat, Celia was in the isle seat, and there was a middle aged man on my right @ the window seat. As I drifted off, I kept leaning toward the right, and Celia would pull me back upright from my t-shirt! Course I'm sure it didn't help any that I was snoring! Celia says she finally slipped the man a note that said, "Please excuse my sister - she is heavily medicated and on her way to have a medical procedure @ a Denver hospital". She said he just smiled and nodded - poor man, what could he do? I asked Celia why she didn't swap places w/me, but she was afraid I would lean over toward the isle or be bumped by people on the left side of my face. True.

Once I was placed in a room after the procedure - I remember the nurses looking for the little "cap" that goes over my trache. When I was having a "hard time breathing", we had called Dr. Hepworth (thank goodness first time I met him he gave me his cell #!) and he suggested removing it would help my breathing process. Well that's good, because no one seemed to know where that darned little cap was anyway! The nurses were asking Celia - how would she know? So, I was given a new "cap" to put back on when needed, and my original trache cap was found, so now I have an extra! Works for me! I have had a HECK of a time trying to find the right size trache - the part that goes in my neck, not the collar that goes around the back of my neck. I expressed my concern to Dr. Hepworth and he misunderstood @ first and gave me like 20 of the collar strips that go around the back of my neck that hold my trache in place! Eventually though, I think I found out during my procedure, I was given a brand new trache, PLUS, Dr. Hepworth gave me 2 brand new ones too! Very cool! Now we can swap them out and clean them. The Respiratory Tech had told me to replace the back collar once a week, but the part that goes inside my neck once a month. Dr. Hepworth would rather I replace the whole thing once a week - @ the most two weeks. Just some of the fun things that take up our time around here, you know? Mark of course has been an awesome Wound Care Therapist/Tech/Nurse!

I do have to remember NOT to over do! I start feeling better, and expect to be "back to my old self", but no way! I need my rest and there is SO MUCH to do to keep things going! We had asked Dr. Hepworth if I had to work w/the Therabite the rest of my life and he said no! I meant to elaborate on the conference Celia and I had with Hepworth and Yakes! Celia and I were glad to see that both doctors were in complete agreement with what the next step would be! Dr. Yakes is very soft spoken and has a wonderful bedside manner - they both do really! Dr. Hepworth is so confident and enthusiastic that you just get drawn in and excited about how he is feeling! When our meeting was over, Dr. Yakes gave me a big hug and kiss on the cheek! Dr. Hepworth had a big hug for me as well - these men are so awesome!

Did I tell you how delicious food is on steroids? YOWZA! I'm just happy that I am now capable of a dry cough and to swallow! A couple of lifes luxuries that we take for granted! I just got up not too long ago and I'm thinking of heading back to bed again! Get all comfy w/my book, update my meds and relax! Was this what I did? Nope! A co-worker had wanted to get together to go to some hobby stores and get what we need to learn how to knit! Actully, Mom had told me she had a ton of yarn, and my friend already had the patterns, so all I needed was the needles! Can't wait - we'll work on that after we eat our lunch on Monday!

Oh! I found a couple other views of some photos from the trip - just to fill in a little of the gap! Thanks for listening! All of you are such a big part of my life and we appreciate you so much!

Hugs!

Cyndi

Posted by Dulce at 4:01 PM  

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