Latest on avm stuff

Wow, I can't shut up, huh? Ha, ha, ha! Once I start to blog .... it's hard to stop! No, I didn't want to ruin my birthday blogging with avm stuff! Originally, Dr. Hepworth wanted me to have the debulking done like April 17th or so, but I thought it was too soon after the last embolization where I felt I had been put through a lot, what with not being able to swallow for 4 days! So I had asked the doctors for a break, which they allowed. Meanwhile though, that means that I'll have the debulking done in early June (June 4th) and Dr. Hepworth wants me out of work for 8-9 days! I'm sure I won't want anything done to me after that - but I'll probably be needing an embolization very soon!

A couple weeks ago, I noticed my eye starting to get puffy. I HATE when that happens! So I called up to Dr. Yakes office and got a hold of Eric, one of his P.A.'s and Eric called in some steroids for me. Well, it brought down the puffiness under my left eye, but guess what? Yeah, the puffy eye is BACK! UGH! Not only that, but I spent all day yesterday in bed, feeling rotten and achey! I don't like not feeling well - poor Mark and Hanz having to put up with me!

I plan on calling my primary care physician tomorrow and hoping he'll call in an antibiotic for what I think I have - an infection! Seems like I'm forever on anti-biotics or steroids or BOTH!

Let's go back to the subject of debulking. My family and Mark all feel that this is what we've been waiting for the last six years - getting rid of the mass under my chin. It scares the heck out of me! I just can't help but feel that when Dr. Hepworth goes in there, that a massive amount of blood will gush out! I'm also afraid of what I'll feel like when I wake up in recovery! Well, let's hope I DO wake up .... the last couple times I've woken up in recovery I have felt pretty bad! The worst of course was when I had the trache - it was dark in ICU and my hands were tied down and my mouth was full of tubes. Not good. Then the last embolization I had, Dr. Yakes hit me pretty hard wanting to close off as many arteries as he could before Dr. Hepworth went in to do the debulking. I completely trust these doctors - they really know what they are doing... but still I worry. Dr. Hepworth says he will cut an oval "hole" under my chin and start getting rid of whatever needs to be taken out of there - tissues, old glue-like substance that other doctors had used to stabilize my avm and fluids. I hear I'm supposed to be in the hospital a couple of days - instead of the usual just overnight like when I have an embolization. There had been talk of possibly having a transfusion before the procedure - but Dr. Hepworth has decided I don't need to have that done here prior to the debulking. He says if I need a transfusion, they'll do it up there during the debulking I guess. Yikes! Ok, I don't want to sound like a big cry baby, and I do realize that other people are worse off and they don't have hope like I do - but after six years of procedures, I'M TIRED! Tired of not feeling well, of being in pain, bleeding and having IV's out the wazoo! I do have to say though that I have the most wonderful family that is completely devoted to my well being! Especially my husband Mark, he truly is an angel! Every once in a while it strikes me that I am so blessed to have this man as my husband! That this is really forever! I want all this avm stuff over with so I can go back to being Marks wife again! Mark is patiently waiting for that as well!

My left ear is all corroded (sp?) and when I put antibiotic ointment on it, no matter how I try, my hair gets stuck to it. I used to tell one of Dr. Yakes former P.A.'s, Rhonda, that I just wanted to shave my head! My hair always seemed to get in the way of what was going on w/my avm! I really dislike having to sleep with that mist cup on my trache at night. That darned thing sounds like an air compressor! I won't miss any of this when it is all said and done! It feels good to get that all out of my system! I do realize that I have a lot to be grateful for, but sometimes I just can't handle all of this gracefully! Thanks for listening and for all your love, prayer and support!

I'm gonna go get a bag of candy corn, my book I'm currently reading and enjoy some quiet time before Mark and Hanz get back from Petsmart! Take care y'all!

Love you!

Cyndi