Well, heck! We are currently without firewalls on our computer - hope to get them back up by Friday - so if you see any ads on my blog - esp. with Obama on it - it was not my doing! Eeeeeek! I can't seem to even get into the previous blog entry to edit it, so we'll see what happens!
Fear of sneezing.
Hi again! How is everyone? Hope you are well and doing all the things you enjoy! I'm going to try and blog a bit while the rest of the household is asleep! Especially Hanz - he really doesn't like me sitting @ the computer when I could be paying attention to him!
As you know, I've been having bleeding issues lately - apparently even though I'm "done" seeing Dr. Yakes, I still have tiny capillaries that need to be cauterized or resect by the doctor who will be doing the next stage of my surgeries! We have been trying for several months to get all my paperwork in order so I can get scheduled to begin this next round of surgeries, but it's been one thing after the other that hasn't gotten us there yet. Unfortunately for me, that means I'm still having bleeding issues! The worst is not knowing when these bleeds will happen - I just had that one July 3 and it was bad enough that I immediately went in to get a blood count to see if I needed a transfusion. I should have gone ahead and gotten it, even though I was @ a decent level.
Wed., July 10th I had gone in to work, and couldn't decide what to do for lunch. I went to the Wal-Mart near work and was looking around, when I felt a sneeze coming on. I dread sneezing, because many times that triggers a bleed. (Although there are times bleeding can start when I'm sitting still) Sure enough, after sneezing I touched my chin and had blood on my hand. I wasn't too far from the ladies room toward the back of the store, so I made my way there as soon as I could. I barely got in and could already feel blood coagulating in my mouth. Made me want to gag and I leaned over the sink to spit it out! A lady was in one of the stalls and when she came out she washed her hands and hadn't really glanced over to what was going on w/me in the sink next to her. When she did, she asked if I needed help. I told her I had already called my husband, but she said she really wanted to call 911. She walked out and I guess got a Wal-Mart employee - she was a manager and agreed that they would call 911. Mark had just sat down to have lunch w/his brother Jim @ a barbeque place when I called - but he got to me very quickly! The first lady kept handing me paper towels as I leaned over the sink bleeding all over the place. I kept trying to rinse my mouth by cupping water in my hand. Meanwhile gobs of coagulated blood were clogging the sink, and I would try and grab a handful of paper towels to throw it out, but that would make me gag! The one lady asked if I needed a chair and I said yes. I thanked her for helping and wondered how all the blood wasn't freaking her out! Between the first lady and the manager, they were trying to help with blood everywhere! Mark arrived and asked if I had any gauze - I usually pack my mouth with it to try and stop the bleeding. Told him there was some in the car, so he ran out to get it and finally seemed to get it under control. It seemed to be coming from way in the back of my lower left molars. It kept coagulating, but I would pull that because it was gagging me and the bleeding would continue! Somewhere along that time, the EMT's arrived and started trying to help. I had sat down on the chair by this time, but still leaned over the sink bleeding. I was feeling light headed and apparently passed out! Mark heard one of the ladies say she thought I wasn't breathing - so he removed my trache cap! I think @ this point the EMT's had cut my kerchief off, as it was in the way and all bloody. I wear it over my trache to keep dirt out, so a lot of people aren't aware I even have it. That's unfortunate, because of what happened with all the bleeding! Thank God Mark thought to pull my trache cap - he saved my life! I started breathing again and the EMT's started an IV by putting a needle on the back of my right hand. Too bad my mediport wasn't accessed, they could have used that. I do not like going to the hospital, especially here locally, but had no other choice with the way I was feeling. Got put in the ambulance and headed to the hospital, with Mark following in his car. He notified my family and they all met us in the hospital emergency room.
Right away I was put in one of the rooms in Emergency, and one of the nurses helped take off my clothes that were soaked in blood. She cleaned my hands that of course were also all bloody. My mouth is packed in gauze and I'm thirsty and can't have anything to drink. Or at least I don't want to because I don't know what's going on in my mouth until I would be able to pull the gauze out and rinse. Course no one wants me to do that yet. My primary care physician Dr. Boynton is notified and arrives soon. My family asks him when I can remove the gauze and he said to wait @ least 4 hours. It's freezing in the ER, my sister Celia is calling up to CO to ask what the hold up has been to get me in for my next appt. We need this bleeding stopped completely! My brother-in-law Jim peeked in @ one time - I waved a greeting. There was only 2 people allowed to be w/me, so family was taking turns. At one point, Celia looked out of the ER room and there was no one around. Seems there was a major emergency, and all staff was trying to help! I can understand that and waited patiently. I probably got to the ER about 1pm and wasn't taken to a room until 7pm or so. I was admitted to ICU because my doctor said that way I would have better care in case I had any bleeding issues. We sent mom home and Celia stayed with me while Mark went home to get a few of my things and checked on the kids (Hanz and Bella).
I kept wanting to remove the gauze from my mouth and rinse so I could have something to drink. All I had all day was a couple of pop-tarts and some coffee while @ work! Mark had to go to my work and get my purse (I had put my license and debit card in my pants pocket) and my "what if" bag that had medical supplies!
The nurse on duty wanted to call my doctor to be present when I removed the gauze. I told him that wasn't necessary - but did wait until Mark came back. He knows best how to help me with everything I need! By the time I was able to remove the gauze in my mouth it was almost 8pm! I knew from a previous visit that there is a thing that is like a stick w/a sponge @ the end that I could clean my mouth up with, so I asked for that. Of course I was given a liquid diet. The only thing I wanted was the teeny cup of apple juice. I know, if I'm complaining I couldn't be feeling that bad - but when you are feeling that bad, it really sucks when you can't even feel better by getting anything decent! Mark insisted I try the chicken broth - gross! Got a popsicle that I told him to eat because I can't open my mouth wide enough to eat that - and orange jello. Ugh.
I kept asking for someone to access my mediport and no one wanted to go there. Meanwhile I am hooked up to all these wires w/a heart monitor and a blood pressure cuff on the left arm. The nurse puts those darned hose on my legs that are hooked up to more wires for circulation. They tell me, "try to get some rest". Connected to all those wires and guess what? I have to go to the bathroom. Celia had asked me when she was there earlier where the bathroom for the room was. I pointed to the toilet chair. Are we having fun yet?
Someone from the lab came by to draw blood - ironic, huh? Mark was still with me and again asked the nurse to access my mediport. Finally they found someone to do this and I know I'm complaining, but OUCH! This nurse did not know what she was doing - the last time my mediport was accessed in CO - I think it was nurse Jason and I barely felt it at all! Soon after this I had asked Mark to go home to be with the kids. Don't like them being home alone so long. I have to show you my baby Hanz sitting in my spot on the couch, keeping it warm for mommy! That's one of the hard things about going to CO or having a hospital stay here - being away from my babies!
Of course Bella was nearby on the king size bed! "Where's mommy"?
I was given 4 units of blood through the night and first thing in the morning, Dr. Boynton came in to see me. I asked if I could go home and he said no problem, he would write up my orders for release! Yay! Got home about 10 a.m. - Hanz and Bella were so happy to see me! Got settled in and communicated a little bit on Facebook to let friends and family know the latest. I didn't want to spend any time on the computer that I could be enjoying Hanz and Bella! Mark as always is amazing! Right away, he fixed me a bowl of grits - nice to have something warm in my stomach! For lunch I asked him for a baked potato, with shredded cheese and sour cream! Normally, I would have tried to go in to work the following day, but I really was feeling weak and needed to regain my strength! Mark had spoken to my supervisor right after the bleeding incident and had no problems there. My supervisor Kathleen is awesome! I texted her later to tell her I would probably wait until Monday to come in and she answered to take more time if needed. I'm glad this bleeding didn't happen @ work! Mark said he hugged the two ladies that helped me after the EMT's took me on the gurney. We'll go back after a while so I can thank them personally. I have been blessed to be surrounded by angels all the time! Can you imagine if I had been in that bathroom alone and had passed out? Well, enough for now - I'm signing off to go check on my kiddos! I'm sure as always I'll tweak this here and there and add info or photos, but just wanted to post this so everyone could know the latest. For now, I have a tentative appt. to see Dr. Robinson (plastic surgeon) in CO on Sept. 11th, but we're trying to get something sooner!
Thanks for all your love, prayer and support!
Cyndi
.... and the nightmare continues.
Wednesday, July 3, 2013
Hey! Happy 4th of July everyone! Hope y'all have a safe, fun one! We'll probably just hang out here @ home, even though we've had a couple offers to join friends and family. Unfortunately, I had a major bleed this morning as I was starting to try and brush my teeth @ 6:30 a.m. I had just leaned over the sink to rinse my mouth and I saw blood. It started coming fast and I called out to Mark to come help. He was still asleep, but heard me and came right away. I couldn't tell exactly where bleeding was coming from and no matter how much I tried packing my mouth w/gauze, it just seemed to soak through right away and kept bleeding! I could tell it was spurting out and I finally got a hand mirror and it seemed to be coming out from under my tongue! After about 5 minutes or so of it finally stopping, I decided since it seemed under control, that I needed to shower in case (heaven forbid) I ended up needing to go to the hospital. I don't like the showers in the hospital I go to a few blocks from our home - I need a hand held shower head to maneuver water away from avm area. Due to partial paralysis on my left side, it's hard for me to shut my left eye, so don't want to get soap in it! Anyway, called my primary care physician to get some lab work done and get a blood/hemoglobin count. Didn't get results until about 1pm - still anemic, but unless actively bleeding, then didn't require a transfusion. As I figured, my doctors office would be closed Friday, so I asked if they could fax the orders for a transfusion where I have them done @ the Spohn Cancer Center. That way in case I had any more bleeding, @ least the orders would be in and I could go in for a cross match and then schedule a transfusion. My husband Mark had already put in for some time off that was to start this afternoon, but w/my bleed, neither of us made it to work in the morning. I went w/him for a follow up doctor appt. he had - as I didn't want to be home alone in case of another bleed. UGH! Ok, I've been feeling so lost and in limbo lately - since I haven't been able to schedule an appt. w/the dentist/plastic surgeon that will continue my next phase of treatments for reconstruction! I had written to Kelly, Dr. Yakes P.A. to ask why I was still having bleeds. I'm writing her answer so that everyone can also understand why this is happening. Let me just say how fantastic Dr. Yakes and his team are! From the P.A.'s to the patient coordinators, office manager (Hi Mona!) and everyone @ Swedish goes above and beyond to help the patient feel well taken care of!
Kelly wrote: "Hang in there girl, we will get you through this!! You can do it. Dr. Yakes said the bleeding may be from the swelling pushing back from the treatment, so give it a little more time. There are also very tiny little capillaries next to the cheeks and gums, in your case, very close. These are too small for Dr. Yakes to treat, but different in you as opposed to another person with no AVM. Hopefully Dr. Robinson can get in there and resect what is left and close those areas up to prevent that in the future. I know you are constantly in fear, and I still want to remind you that you will not die from this bleeding, you know what to do and you have good doctors there to see you at those times in need! Wet gauze, breathe, relax and then see your doctors.
As far as us you can see us in 6 months for MRI and arteriogram. If you are in recovery from a surgery or it's not convenient, then you can wait longer on this. Keep us updated to how you are doing".
Kelly
One of the things that has really helped, is recently joining an AVM Support Group on Face Book! Wow - just knowing that you aren't alone and that someone else completely gets what you're going through is a tremendous help!
Every time I have a major bleed, it freaks me out and I don't want to be alone or stray too far from home. Glad it didn't happen @ work! As it is, I really limit my outings to work, to Barnes and Noble to get free WiFi and my free Friday book and to Petsmart to take the kiddos on an outing! That's it! Oh, and to the grocery store a few blocks from home - usually w/Mark. I just can't see myself trying to take in a movie. What if I start bleeding and I'm sitting there in the dark! Can't eat popcorn - limited to what I can eat w/the avm stuff going on in my mouth. If I sit still too long I'll fall asleep from never getting enough sleep @ night and pain killers that make me drowsy! The only movies I've ventured out to see in the last few years are all the Twilight movies, as I'm a Twi-hard! (One of my besties @ work got me this cross stitch pattern! She was putting in an order from Mystic Stitch and they had a sale, buy 3 get 3 free!) Don't know when/if I'll do this, but it will be time consuming that's for sure! Yes I know Kristen and Rob aren't together anymore, but they'll always be Edward and Bella!
During the Breaking Dawn 2 movie - it hadn't started and I was already falling asleep! I had to take a steroid to stay awake! I just feel safer and more comfortable @ home. Besides, I really don't like how people gawk at me when I'm out in public. I didn't think I was THAT hideous! Where are the parents of these kids that see me and just stop in their tracks and stare at me? I know they are innocent, but it makes me feel like crap.
I really don't want to get back on anti-depressants, but I don't like who I am w/out them. Unfortunately, being on them causes me to have very strange dreams and have restless sleep! Mark would tell me I was kicking and squirming all night! I really try and psych myself into having a better outlook, but it's hard when my left ear is draining, I'm drooling, hacking or bleeding. I can feel the coils that are still in until I get debulked under my chin. Can't wear make up to look any better and I just feel like my life has been on hold now for 10 years!
I miss Mark-a-ritas - can't drink, I need to have my wits about me in case of a bleed! I do have things to be grateful for. I have a trache, but don't need it to breathe, just to be intubated. (I'm limited on how wide I can open my mouth right now, due to avm). I know some people need their trache to breathe and need to be suctioned daily - so @ least I'm not having to go through that on top of everything else!
I'll be tweaking this blog entry, as I always seem to do w/all my other entries! I need to put in some photos and I wanted to tell y'all about all my besties that make my life a little easier by being so fantastic and supportive!
I'd better call it a night. Dread going back into the bedroom - fear of having a bleed during the night. Mark usually falls asleep on the couch and comes to bed about 4 or 5 a.m. I can't fall asleep on the couch since I need to be hooked up to my humidifier on my trache and sleep almost sitting up in my hospital bed. If I do doze off on the couch, I end up having a hard time "waking up" and feel like I can't catch my breath! Thanks for putting up w/me! If you're healthy, don't ever take it for granted! I'll check back soon! Hanz already came by earlier to tell me to get off the computer!
Cyndi
I just had to put this in here - cute, huh?
Ok... here's my kids! Bella is two! She snores like me and she is daddy's girl! If I baby talk one of them, the other one has to run up to me as if to say, "me to mommy, me too"!
The trials to which the Lord subjects you and will subject you are all signs of divine love and are jewels for the soul. Winter will pass and the never-ending spring will come, all the more rich in beauty as violent were the storms. St. Padre Pio
Ok, so I'm having a hard time ending the tweaking of my latest entry! I was telling my husband Mark earlier, that the other night as I got into bed, I couldn't decide whether to read or watch TV. I ended up getting my phone and checking out You-Tube. There was an artist that I love(d) - he is no longer with us - Dan Fogelberg. Passed away @ the end of 2007. If you aren't familiar w/him or his music, please take time to research him, I don't think you'd be disappointed. I was lucky enough to see him in a live dinner theater atmosphere while I lived in Miami while I went to college for a few years. Such a shame he's gone, but his music will live forever! Kinda reminds me of how Taylor Swift writes - you can just envision what happened by listening to the lyrics. Definitely telling a story.
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