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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
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      • Here we go again!
      • Warning:Graphic Bleed photos
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Cyndi's AVM journey

Check out my Pictures at the bottom of the page!

Here we go again!

Saturday, April 14, 2012

Hi Family and Friends! How are you? Well, you can probably guess what I mean - yup, another bleed. Don't know how much more of this I can take! I was @ work Friday, I had clocked out for lunch and was just reading my book since I haven't had much of an appetite lately. I was a little chilly, so decided to go sit right outside the back door to thaw out a bit. I hadn't been there but a few minutes, when I sneezed, and next thing you know I could feel the trickle of blood coming down my chin! I quickly stood up and headed for the bathroom. My friend Diana and the other officer that helped w/my bleed last time, Della, were both off and there didn't seem to be anyone around! This was during the latter part of the lunch hour. Finally, another female officer came in the bathroom and I asked her to please get my supervisor Zan. She took off right away and next thing I know I could hear running footsteps down the hall! Zan got to me quickly - fortunately this bleed wasn't as bad as the last one! Zan offered to get me a chair, but I was ok. Another officer, Audrey, had peeked in and she asked if they should call Mark. Told her my phone was in my pocket and she got it and Zan got Mark to come by and pick me up. Since he had to go back to work, he dropped me off @ Moms so I wouldn't be home alone. Mom gave me something to change into and get out of my bloody polo shirt, and I tried removing the paper towel I had packed the left side of my mouth with. Started bleeding again - darn! Makes me so angry! I sat back down in the living room and read a while. At this point, I had only had a little orange juice, some coffee and very little of a danish in the morning and I knew there was no way I would be having any lunch. Mom kept me company and I had my mouth packed until about 4:30 pm when I couldn't take it anymore! Mom came with me to the bathroom as I removed the paper towel - the bleeding had stopped! Whew! I rinsed my mouth and was wanting to brush my teeth, but that would have to wait until I got home. I use a child size toothbrush since I can't open my mouth too wide right now.
Mark came to pick me up and we went to get my car I had left @ my job and then drove home. Mark heated up some chicken and stars soup for me and I ate a little of that. Later that evening, he made up a nice baked potato and I ate maybe half of it.
My blood pressure has been low, so I haven't taken my hbp pills in almost a week - per my PCP. I need to find my bp monitor today - it's lost in the abyss of our home.
I can't remember whether I mentioned in the previous blog entry that I had gone to see my PCP on Monday, since I had a bleed Easter Sunday night - to get some lab work and check my hemoglobin level. It was fine, and I don't think I lost that much blood on Friday, so I should be ok. So many things to worry about - this avm can just go off at any time, but I'm afraid to brush my teeth and I always follow that up with some oral rinse prescribed by my dentist, so that will kill any bacteria in my mouth. I worry about having bad breath, but it's hard to get in there with my whole avm situation.
Mark has to work on Sunday, so I'll have to find someone to "babysit me" in case (heaven forbid) I have a bleed, I won't be alone!
So there you have another chapter of my life. Very upsetting. Not fair to my babies that I can't be home with them on Sunday. I just want to rest and afraid of going anywhere in case of bleeding! On the other hand, I can't live in fear all the time - but I get a little reclusive especially after a bleed. My next embolization appt. isn't until the second week of May, so I'll have to wait until then to get Dr. Yakes to work on me. He is out of the country until the 18th of this month - probably teaching other doctors how to do what he doees!
Ok everyone - enough downers! On a happy note, Celia got me an early birthday gift - a Barnes & Noble gift card! Yay! I get to buy more Nook books! I am currently reading The Garner Files by James Garner. I had gotten that book for mom for her birthday, so she just passed it on to me! I had a co-worker lend me a book called Lost & Found and one of the main characters in the book is a black Lab named Cooper - it was pretty good and I hear the sequel called Picture This will be out next month! Ok, I need to go pay attention to my furry kids! Hanz has already been over here once trying to get me off the computer! Take care all, and thanks for keeping up with me!
Love,
Cyndi, Mark, Hanz and Bella!

Posted by Dulce at 9:09 AM  

2 comments:

FABmom said...

Hey friend! You have been through so much and we are all here for you. Love ya, Felice

April 16, 2012 at 7:34 PM  
Poppy Black said...

Oh my goodness, you have been dealing with so much lately! Not sure how I found your lovely blog, but now I'm keeping an eye on you from New Zealand and sending my best wishes to you. XXX

April 17, 2012 at 1:28 AM  

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