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.
Spouse/Caregiver
Saturday, June 22, 2013
Hi Everyone!
Well, It's been a little over a week that I've been back from Denver and doing well. Doesn't mean I'm happy, but @ least I'm not bleeding! For those of you maybe not too familiar w/my situation (Hi Lindsey!), for a while I would have severe bleeds from inside my mouth. This is spontaneous and has happened so severely @ work that I've had to be transported by ambulance to the hospital. I'm really trying to make a conscious effort to feel better about my whole situation.
Even though I got the "all done until a check up in 6 months" from Dr. Yakes, I can't even enjoy that since I've had a few bleeds since leaving Denver. So am I REALLY done, is the bleeding just a "hic-cup"? Let me just say that I love my life. Everything about my life is awesome, except for the avm. I am very blessed to have a family that loves and support me,
(here are my nephews Mark and Davis)
Here is one of my favorite photos of Mark and Hanz!
This next one was taken the day we got Bella! Probably the only time she was smaller than Hanz! They are Brussels Griffons, like Verdell in the movie As Good As It Gets with Jack Nicholson and Helen Hunt!
I love comedy (Big Bang Theory),
music (Taylor Swift - LOVE her! Since I can't hear well right now, I enjoy blasting her cd's in the car - all her songs are so cool! Did you know her song Back to December from her Speak Now cd is supposed to be about what happened between her and Taylor Lautner from Twilight? I loved seeing the two of them together in the movie Valentines Day!
The Band Perry - Neal, Kim and Reid)
and I enjoy several hobbies: cross stitching, rubberstamping, calligraphy, reading, blogging). I've always loved to write, so this gives me an opportunity to do that and to vent and share!
Did you know that I have an Aunt that is about to celebrate her Jubilee in a few weeks with the Sisters of St. Mary in Oregon? We grew up close to Sister Juanita, she is one of my moms younger sisters - she was my inspiration for learning calligraphy! Sister J. did all our wedding rehearsal dinner menu's in calligraphy @ Edelweiss!! Here she is and I'm including a photo of her bestie Sister Adele! I really am blessed to have such an awesome family!
As some of you fellow avm-ers know, having embolizations results in swelling and steroids are needed to reduce swelling. I used to love steroids - it meant energy and feeling better! Unfortunately being on steroids for any length of time also means a huge increase in appetite, can't wind down enough to get a good nights rest, skin drying to cracking/splitting and losing bone density. My potassium is always low lately, so I take extra potassium - if I take the liquid form, it tastes like eating a cube of salt (even w/the mango flavoring from the pharmacy) and the pill form is huge and chalky! Ugh! I also take extra iron since I have/had frequent bleeds and calcium to help my bones and hair! Everything on the left side of my face is messed up due to the avm.
I recently came across this photo - this was when Dr. Yakes aggressively went after a huge artery I had - ugh! This took several years to heal! Mark would do my wound care between sessions when I would go in to have it cleaned - and had to have it covered to keep germs out. It was hot and uncomfortable.
My family always tells me how "brave" I am - what does that really mean? I feel like I don't have a choice but to go out into the world and live my life. What's the alternative - cowering in the corner and shutting down? I'm sooo tired of people staring @ me when I'm @ the grocery store, or I go out to grab a bite to eat. Wish they could be a little more subtle about it. People need to explain to their children that we all don't always look well due to complications. Please educate kids!
Avm's don't go away either - having one means seeing it through until a doctor can get rid of it. If you can find a doctor that is willing to take you on as a patient - believe me, there's been a couple of doctors not wanting to touch this and can't blame them either! I feel it is a curse. It isn't something that can be dealt with easily - it's an ongoing process that can take years of treatments.
This has been extremely difficult on my marriage - how could it not be? Mark and I will be married 22 years in December. Here are some old photos I ran across. I wish I could wear makeup - someone asked recently if I could wear foundation. No - my skin is soooo sensitive right now - even if I could apply it, removing it might cause irritation or bleeding. I have lots of little blood vessels all over right now that hopefully will be taken care of later. The only thing I might be able to do is wear some eyebrow pencil and some eye shadow and mascara. For a long time I was very weak from losing so much blood, that I didn't feel well enough to even think about trying to improve my appearance.
Marriage is difficult enough on it's own, without throwing something like an avm into the mix! If I'm going through hell, my husband Mark is right there with me. He's had to clean up the bloody mess I make when I have a bleed, as I'm certainly not feeling well enough, or can't bend over to get it done myself! He's handing me gauze to pack my mouth with as I lean over the sink trying not to get blood everywhere!
I've been hacking lately due to allergies, so I asked Mark to replace my trache. I'm so lucky he does these things for me - I know men that won't even carry their wives purse to help them, much less clean and change out their trache! My friend and neighbor Terry is a respiratory tech, so she has always been available to us for any help we need in that area! Back to Mark being my caregiver ....
Of course there's times we lose our patience and lash out - no one could blame Mark. It isn't just a matter of my saying, "Oh, I don't feel well, but I'm going to be as nice as I can anyway." When you're gushing blood clots or in pain (or both), all you can think of is stopping it in any way possible. I don't like to wander too far away from home, as of course that is where I can be most comfortable. I'm doing good to get to work and back. I pull a hobby cart full of anything that will make my life easier every day to work! I have meds, snacks, books, magazines, cd's - anything that will help get me through the day!
Yesterday after work, I had asked Mark if we could take our kids to Petco and Petsmart, as they hadn't really had much of an outing lately. It was really too soon for me to go on an outing after my last treatment. It's been so hot out, that we don't like going out in the yard to walk Hanz and Bella on the leash - and this way, we all get out of the house for a little fun and stay cool too! I don't know why I even bother w/Petco (diversity), as their employees are never friendly or helpful. I've even spoken to the manager when I'm seeking a particular item, and he's just as bad. Anyway, by the time we left Petco and then went to Petsmart - (where we were cheerfully greeted by employees), I was already planning what I could eat the minute I got home! Yesterday was my last day on steroids and I knew I had to have food right away when I got home! Soon as we walked in the door, Mark started making me a baked potato (loaded) while I had a peanut butter jelly sandwich and then I had a big bowl of Basmani rice! I have to eat soft foods due to losing some crowns and some of my teeth are damaged from the bleeds and have cracked! I am limited to how wide I can open my mouth w/all the avm things going on, so it's been difficult to eat, brush and function normally.
Thought you might find this interesting. The following is a description of "phase one" of the proposed treatment plan that Dr. Robinson (Cosmetic Surgeon) wants to start my reconstruction with: Keep in mind I hope to be able to hear again on the left side and need an earlobe reconstructed, amongst other things.
Surgical removal of erupted tooth (Tooth #1,#2,#3,#18,#19,#20,#21,#22)
Surgical removal of erupted tooth (Tooth #12,#13,#14) possible.
Blepharoplasty, lower eyelid
Adjacent tissue transfer or rearrangement, forehead, cheeks, chin, mouth, neck;defect 10.130 sq cm
Repair lip, full thickness; over one-half vertical height or complex.
Established patient-history, examination, counseling and ordering lab or diagnostic procedures.
Since the left side of my face has been so damaged with embolizations, Dr. Robinson said he may be able to use some of the skin under my chin in that area.
In speaking to my brother-in-law Greg, DDS., he's told me how some patients have all their teeth removed @ once! I can't even begin to imagine. It's bad enough I have to have any removed, not to mention what is going through my head is - will the blood start gushing upon removal? It shouldn't, as I'm supposed to "be done" with the avm, but this thing has a mind of it's own. How can I not be concerned or anxious? I'll be living on mashed potatoes and liquids for a while until my gums heal and I can have "temporary teeth" until possible titanium implants later? Right now I drool due to my split lip - can't wait to get that fixed. Hard to use a spoon and must use a straw to drink from a glass. I can drink bottled water from small opening. All these things are going through my mind and I'm having to deal with figuring out what I can eat, am I drooling, bleeding, hacking, etc. - so my primary concern isn't always being the best patient possible. Poor Mark works all day (out in the hot sun a lot) then comes home to help take care of me and cook and keep our home running! He feeds, bathes and cleans up after our furry kids Hanz and Bella. They are essential to my recovery - they make me so happy and help me forget what I'm going through, at least for a bit. They are both have a good disposition (esp. Hanz) and we adore them! Bella is a live wire and we can't help but laugh @ her antics! My job is to snuggle and love them! Here are my kids, making sure mommy knows they love her!
My sister and her husband Greg have been instrumental in helping us get through this terrible ordeal. They help monetarily of course, but they supply us with lots of love, prayer and time! For the most part, I'm a happy person, but going through all of this crushes my spirit @ times, and I sometimes wonder how I'll ever get through it. I do realize there are avm patients that may not be as lucky as I am or are going through this on their own - but believe me, this is the toughest thing I've ever been through. I'm grateful that I don't have children to worry about - can you imagine having to go through this and have to be trying to find someone to take care of my kids when I'm in CO! We have awesome neighbors that take care of Hanz and Bella when Mark accompanies me to CO - breaks my heart to leave my babies!
In my mind, how I feel and how I look are two different things. When I feel well enough and I'm enjoying music - I'm not thinking about how I have facial paralysis - how I can't sing along (hard to understand what I'm saying with my split lip and bulk from avm that hopefully will be debulked soon) - not to mention I have hearing loss on my left side. All I can hear on the left side is my pulse.
I am grateful not to have had any bleeds for almost 5 days. Mark has a pulled pork going in the crockpot that smells wonderful! I believe there is some acorn squash and fries to go with it!!! I'm doing some laundry and need to go check on the furry kids to make sure they're not into any trouble! I went to Mom's earlier and Mark texted me that he found Hanz and Bella with some bread on their bed. One of my step-sisters had a dog that ate a loaf of bread and died, so of course I was horrified to know Mark had found bread on the floor the kids had gotten into! Luckily, I don't think they ate any of it before he found them! Whew!
I may tweak this here and there, but I've been wanting to write some more about how I'm feeling and what I'm going through right now.
Take care!
Cyndi
Denver - June 2013
Sunday, June 16, 2013
Hi everyone! How is everybody? Well, this blog is long overdue, but I figured I would wait until I got back from my latest trip. Hanz doesn't like my being on the computer and I feel guilty if I neglect him too long!
I was doing well for a while, but had an occasional minor bleed. Kept trying to get an appt. w/the plastic surgeon Dr. Robinson to have one more consultation before he starts working on me. Plastics was waiting for an "all clear" from Dr. Yakes before starting anything else!
Had a great Birthday in May! One of the longest friendships I have is w/Sylvia Wilson, she sent me beautiful flowers to work and we had dinner @ her house. Mark had made one of my favorites - lasagna! I've known Sylvia and another of my besties in Dallas for almost 40 years! We met when we were one! No, we met about 13 years of age in middle school when my family lived in Kingsville, and we've kept in touch through the years! In fact, it was Patty we stayed w/in Dallas when we drove up to get Bella!
My co-workers (clerical team) and my new Supervisor Kathleen surprised me w/a cake on my birthday! I was called to Administration thinking we had a meeting and was surprised to have a celebration! L-R Christina, Gina with her arms around me, Lucinda behind her. Olga in the green (love her - we were in choir together many years), Vanessa behind her and Manuel next to Vanessa! My co-workers are awesome - very supportive of my situation!
Immediately got our car rental and headed to Swedish Medical Center to get registered! Dr. Yakes P.A., Kelly is the one that took are of all my admissions and patient coordinator Becky was also there. After going over paperwork and a few concerns, Celia and I went across the street to have dinner while Kelly took our luggage up to my room! Celia frequents this restaurant when I'm @ Swedish, so it's like when Norm walks into Cheers - everyone recognizes her!
After dinner, got settled into my room. First thing I did was put the throw on the bed that Celia had given me for my birthday of the Big Bang Theory gang! Got my mediport accessed and my designer Zac Posen gown - yeah right! I read a while after Celia left to go to the hotel. Raided the fridge for some juice - some nurses came by to say hello since they had seen my name on the schedule. It's such a great feeling knowing so many people care and are doing their best to make you feel better! I got a chance to see Mandi, another of Dr. Yakes P.A.'s during the day Saturday. Also one of the Internal Medicine doctors came by that was on duty. I've met him on several occasions and asked him for Dr. Pinsinski (also Internal Med. doc). Apparently Dr. P. was out of town, but Dr. Acuna told me Dr. P. tells him I'm a favorite patient. Everyone @ Swedish is so awesome! Barely got a chance to talk to Victoria in Housekeeping - she was surprised to see me! Guess when we told her I was "done" she thought I wouldn't be back. Fortunately, Dr. Robinson (plastics) works out of Swedish, so I'll be around another few years there!
Had an MRI scheduled in the morning - can't tell you how much I dread getting into that tube!!! Claustrophobic!!! I know that there are open MRI's but apparently the closed one takes the best images. I had been prescribed a higher dose of Xanex to get through that procedure. Still experienced enough anxiety that I was so relieved when it was finally over!!! Got transported back to my room and had to wait until almost 3pm for the angiogram to be done! So, that was all day w/no food for me! It wasn't so much hunger as it was thirst that was bothering me!
Celia and I went to the hospital gift shop! Again, we frequent it enough that the lady who runs it recognized us! I had been wanting a chain for my glasses that I found there - it's a light pink crystal bead that it's made from. Also wanted to add to the lanyard I wear for work - saw a cute "pulley part" that has a red heart shaped smiley face w/a bandaide over one side of it's head! Celia also liked these really cute "purses" that she got one for each of us! A long shoulder strap, but you had just enough room to carry your phone, license and credit card! I'll have to take a photo to show you - pretty!!
Back up to my hospital room to get ready for the angiogram. Was happy to see Dr. Jen Qin as my anesthesiologist and of course Dr. Yakes always comes over to say hello! Dr. Yakes called Celia when I was done - he used 8 cc's of alcohol under my chin. I had to wait until 8:30 p.m. to be able to get out of bed, due to the groin stick for the angio. Oops! Gotta go - Hanz caught me on the computer and wants my attention! To be continued!
Hi again! One of my favorite techs was on duty the following day - Alex a/k/a "Taylor Lautner" from Twilight. He always signs "Taylor" on the eraser board in my room and pops in to make sure I'm ok! My friend Dorinda had given me these cute puppy slippers that have the non-skid on bottoms - everyone got a kick out of them!
Would you believe I didn't sleep that night? Finally closed my eyes @ 6:00 a.m. - might have slept a couple hours before getting up. Had to wait for my daily meds when the new shift got settled in after 7:30a.m. so I could then get my medi-port deaccessed and it would be easier to take a shower. Ordered breakfast and finished that, got deaccessed and showered. Celia was with me by then and we finished packing up and headed to a favorite diner called Sam's to have lunch. Headed to return car rental and then on to the airport. By the time we landed in Houston Hobby I had a slight bleed while waiting to board the flight to Corpus Christi. Got in about 11pm - I was so glad to be home!
Celia is a great traveling companion! So generous and caring - makes these trips manageable for me. We are all constantly in touch w/one another during these trips especially.
Saturday I had a couple minor bleeds in the morning and then another that was harder to control that afternoon. Don't understand why - maybe tissue breaking down? I'll be writing to Kelly in CO to ask. How can I feel I'm making progress unless the bleeding stops? I've felt just blah all day today. Just did some light housekeeping - can't pick up anything heavy for @ least 4 days after having that angiogram. Mark has been fantastic - preparing all my favorite things to eat. Since Dr. Yakes did an embolization, I've got to take steroids for the swelling and that always increases my appetite tremendously.
I'm sure I'll be posting more photos or tweaking this a bit. Some of the photos I took w/my phone haven't make it to the computer yet, so I'll take care of that soon.
According to Kelly, Dr. Yakes has given the all clear for me to start the next phase of surgeries w/Dr. Robinson. Right now we're waiting a few weeks for all the paperwork on what Dr. Yakes did to get to Dr. Robinson, plus getting insurance checked and all - so no telling right now when I'll be going to CO again. Just hoping I won't have anymore bleeds!!!
Recently went down memory lane w/2 of my friends - Dorinda is vacationing in Iowa where her folks still live and she came across this poster! We used to love to go see Steve O'Neill playing @ Chelsea's Street Pub! You can actually see his performance of the song "Web of Deception" on U-tube! Fun times! His drummer was funny too!
The worst part of going to CO for me is missing my furry kids! See photo of kids piled up on Mark! Can't really tell where one ends and the other begins - weird!
I plan on going to work in the morning - just going to carry on and I'll write to Kelly and asked her what's going on w/my bleeds. Ugh! I probably shouldn't have blogged until I know more, but I know a lot of you want to know how my trip went! Couldn't do this w/out all your love, prayer and support! I am very blessed to have so many people that care. I'm often told how well I handle my situation - but I really don't. If it weren't for me surrounding myself w/all your positive energy, I don't know where I'd be! I mainly have pretty good days - but having bleeds just really sets me back and gets discouraging! Kelly assures me they'll get me through this - just seems hard to get a grip on that sometimes!
I'm off to get a few things ready before work tomorrow and Mark set up the Daytime Emmy's to record on the dvr. He'll be making something Italian for dinner - yum! He surprised me with making a cake for dessert!!! Will keep you posted and add more information soon!
Love to all of you!
Cyndi
P.S. I hope to get this pattern sometime and complete it! Recently started feeling well enough to pick up my cross stitching hobby again! Working on a couple other projects before even thinking of the one below!
April 2013 CO Trip
Saturday, April 20, 2013
Hello Family and friends! How are you? I want to fill you in on all my latest adventures! I had been doing fairly well, but had been having a bleed once in a while from inside my mouth or could feel it running down the back of my throat. I made an appt. w/my PCP to get a blood count and needed 2 units of blood. I'm sure some of you saw the photos I posted on Facebook that day! As always, Mom and Celia are very supportive and took shifts keeping me company during transfusion since I had to sit there the better part of the day! Celia took me out for a late lunch when my transfusion was over - I had been craving the delicious cobb salad @ Waterstreet, so that's where we headed!
I barely got a couple bites into the salad when I felt like I was bleeding and sure enough, Celia confirmed it as she could see blood trickling down my chin. Made it to the bathroom @ the restaurant and tried rinsing my mouth - finally got it somewhat under control and Celia got our lunch salads to go! She offered to stay w/me until Mark got home from work, but I told her I'd be fine. Turns out I had another bleed from inside my mouth shortly after she left. It wasn't a major one, but enough to keep me busy trying to pack my mouth and not get blood all over the place! Poor Mark gets home from work to see me still trying to control the bleed over the bathroom sink. Ugh! So, by this time it's after 5pm, but called my PCP to ask if he thought it was a good idea to get another blood count since I had just lost so much blood. I was so glad when Mark got home because by that time I was feeling faint and he brought me a chair to sit and I threw up. Anyway, got another blood count in the morning @ the lab, and needed to get another unit of blood. So back to the Spohn Cancer Center the following day - this time I told my family I'd be fine on my own. Everyone @ the Cancer Center is so friendly, that I felt comfortable going on my own. Soon as I was done there, I headed in to work! I have such great co-workers - one of them offered to lend me some dvd's and a book from the book club she belongs to, since she knows I can't really go out to movies, as I would worry about having a bleed while I'm sitting in the dark movie theater! The only movie I saw last year was Breaking Dawn Part 2 (because I'm such a
Twi-hard!) and as it was, I fell asleep before the previews even started! Some of the medication I have to take make me drowsy, so if I sit still too long, I'll fall asleep! Mark had to wake me up before the movie started and I took a couple of Prednisone for some energy! Anyway, I thought it was so generous and sweet of my co-worker Lisa to let me borrow her things for my entertainment!
I don't know if I mentioned this in my last blog, but I had written an e-mail to Dr. Yakes P.A.'s and asked why I was still having bleeds when I'm supposed to be "done" w/procedures! Kelly's reply was that I have damaged, unhealthy tissue that still needs to be debulked from the left side of my face, so until that is done, there is a chance of having bleeds. Ok, I guess I can understand that.
So it's finally time for us to go back to CO - the original plan was that I would check into Swedish upon our arrival Tuesday, and have an MRI and Angiogram the following day to see if there was any trace of the avm left. Andie is one of Dr. Yakes P.A.'s and the one who got me registered @ Dr. Yakes office - I wanted a photo of her to put in the blog, so here we are, along with Mona, Dr. Yakes office manager!
Soon as I got settled in to my room, I had some lab work done, and I needed to get another 2 units of blood! Yikes! Meanwhile, it's snowing in Denver and that doesn't make people from South Texas happy @ all! The weather in Corpus Christi would reach up to 80 degrees that day - here is the view from my hospital room!
Here is our car rental covered in snow!
As much as you would think a hospital stay isn't any "fun", I can honestly say I love everyone @ Swedish! Here is a photo of the swan towels @ the window of my room!
All the nurses, techs, clerks, housekeeping - are awesome! I asked for my fav. Tech, Alex (a/k/a Taylor Lautner-Jacob from Twilight) and he was working another floor, but came by right away to see me! He's such a sweetie and a doll - look how he wrote his name on the dry eraser board in my room!
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Caught up on the latest - some of the nurses that have taken care of me are either on another floor or have moved on to another job. I was happy to see my buds Dave and Elizabeth as RN's still there! Plus, ran into Victoria from Housekeeping too - Celia asked me to pass on a big hug to her! Victoria has always been so supportive and assured us I would be fine, as she had seen more severe avm cases (than mine) that turned out well! Another favorite nurse, Jack also came by to say hello! Jack took care of my new buddy from West Texas, Ashley Stanley that is a new patient of Dr. Yakes! Had about 4 Respiratory Techs come by and visit and got me everything I needed as far as supplies - I need to have a moisturizer/humidifier on my trach when I sleep!
I ordered dinner and Mark and I watched one of the free movies offered - Skyfall. Mark fell asleep right away, so then I decided to watch Breaking Dawn Part 2 and then I read from my Nook for quite a while!
Early the next morning I was taken for an MRI - and I had already spoken to my PCP here about taking a couple of Xanex before going into that tube! I didn't dare open my eyes once I was in there and have a claustrophobic panic attack! The tech had asked if I wanted to listen to music and I said yes! He had put some headphones on me, but I never heard a thing! I had a little bit of a coughing fit while in there, so they didn't get the clearest images, but I guess enough to show what they needed to know!
While I was having the MRI done (about 20 mintues in there - but it seemed like a lot longer!), Mark met a couple from New Mexico I think, that had been to Swedish the year prior to have embolizations done by Dr. Yakes. Mark said that while talking to the couple (the husband has the avm) they just weren't sure whether to continue down this road, of having embolizations @ Swedish. (I'll always respect a patients privacy and won't reveal too much, as it is not my place). Mark assured them they were definitely in the right place to be helped by the people most qualified to take care of the problem! Mark asked me if I wanted to meet them and of course I did! I gave them one of my blog cards and confirmed to them that even if it's been a very rough journey, this is the place to be to get the ultimate help with an avm! I've just recently been able to see that light @ the end of the tunnel, because for years we felt like this would last forever and we were just floundering and dealing with everything the best we could! I know I've probably driven Dr. Yakes staff crazy w/all my questions and wondering "how much longer" ... but they have always been so gracious and supportive! I feel like a little kid on a road trip - "Are we there yet, are we there yet"? I can't tell you how many times Dr. Yakes P.A.'s and patient coordinators have put up with my endless questions and concerns - they are the ultimate professionals and never had a negative answer or harsh word!
The next step was for me to have an angiogram, but from what I understand, Dr. Yakes was coming in from out of town and his flight was delayed, so I was put back in the hospital room until I could get the angiogram done in the afternoon! Luckily I didn't have much of an appetite, but I had gone w/out eating all day! It's finally time to go have the angiogram and I'm super happy to see Dr. Jen Qin, one of my favorite anesthesiologists! Hadn't seen her for severl procedures and she was so happy for me to be toward the final stages of my treatments!
She got me settled in right away and injected the "happy juice" into my IV, so I barely remember anything until I woke up in my hospital room! I do remember Dr. Yakes coming into the OR to give me a hug and kiss and talk to Mark a bit! I hear I had a bleed as Dr. Yakes finished my embolization - so I woke up with packing in my mouth. Soon as I was able to get out of bed, I got that packing out and rinsed and brushed my teeth! Luckily there was no bleeding @ that time!
I always dread having an angiogram because that means I have to lay flat on my back several hours and that is painful on my lower back! Can't get out of bed for several hours as I may bleed from the groin site where the angiogram was done! I'm so happy when I can finally sit up and have support under my knees and be in a sitting position! I was still groggy when Kelly came by to check on me when I was back in my hospital room.
Here I am Thursday morning getting some last meds into my mediport, then haveing the mediport deaccessed since we were ready to check out of Swedish! This sure beats leaving w/purple bruises all over my wrists from IV's - my primary care doctor told me I would love having a mediport!
This morning we are scheduled to meet Dr. Randolph C. Robinson - MD, DDS, FAACS - OMG, right?! (Yeah, I got that last OMG from "Sheldon" on The Big Bang Theory after he rattled off all his own credentials!) Dr. Robinson is the plastic surgeon that Dr. Yakes "sends his babies to" according to the P.A.'s! Dr. Quinn had already told Mark and I what an outstanding physician Dr. Robinson is - we were very happy to hear he was a dentist first as I knew I would be needing help in that area! We were meeting @ Dr. Yakes office - since we heard Dr. Robinson was in the last stages of relocating his office, so it was convenient all around to meet @ Swedish! He's going to be my new best friend!
Found out Dr. Robinson can practice out of Swedish, so that made me feel great! Had a wonderful talk with him - he could tell how supportive Mark was and he asked us to tell him all about what we'd been through w/the avm! Dr. Robinson took some photos of me and I didn't know that Mark had some photos in his phone he wanted to show Dr. Robinson - one of me the year Mark and I met, and a wedding photo of us! I had told Dr. Robinson about my blog and he asked if the photos Mark shared w/him were in my blog and they are! He did take several photos for his own records and said he felt he could help me! (For some, you may not know I've been having surgeries for 25 years trying to get rid of this avm)! I think now I can officially start getting a little excited about my progress! Dr. Robinson asked where I wanted him to start and I told him where ever he thought was best! So, he seems to think he'll work on debulking my left cheek and start working on my dental as some of my teeth and molars have broken and are decaying. It's hard to get in and brush my teeth since I can't open my mouth that wide right now. I use a child size toothbrush and really need to start using the Therabite. ( I've not used it due to fear of bleeding or have been bleeding, so can't use it to exercise my jaw and help open my mouth wider! ) Horrible, I know - so self concious about my breath, especially since our family is in the dental business! Between my brother-in-law Greg being a dentist, my sister a dental hygenist and my nephew Mark makes porcelain teeth and crowns! Dr. Robinson did mention that sometimes an avm can alter some of your bone structure, so I asked if I needed something like that taken care of, would he be the one to do it and to our relief the answer was yes! He said his goal was to make sure I could have a "normal", relaxed expression, and of course w/nerve damage, I would probably have a crooked smile, but I can live with that!
I read and belong to an avm support group on Facebook, and am sad to know so many people out there not knowing what to do if they have an avm, or are suffering because they can't find a doctor that knows how to help, or can't afford to fly in to see Dr. Yakes! Believe me, avms are not just about "appearances", they are dangerous if not treated properly and can definitely get worse unless the doctor knows what he's doing! Avm's will not go away on their own, that's for sure!
So, now the plan will be for me to return to CO in 6 weeks, and I'll have another MRI and Angiogram to make sure I'm completely avm free - since this past visit Dr. Yakes ended up having to use 14 cc's of alcohol on 8 different areas and do an embolization ( I had a "hiccup" like Shalon calls it, and needed an additional embolization)! Dr. Yakes told Mark he felt he really got all the avm this time! I may be able to start the debulking process during the next visit - we'll try and schedule everything soon! It will definitely take several procedures to get completely debulked and reconstructed - we're thinking anywhere from two to three years. Hard to put a time line on any of this, as a lot of it depends on how I heal or the results of the debulking as we go along! Dr. Robinson talked about using the skin from under my neck to put on my left cheek as he felt that area of skin was damaged and the skin under my chin appeared healthier. We'll see - he knows best, so we're trusting him completely!
Let's change the subject for a little bit - one of my favorite new Country singing groups is The Band Perry! Sibblings that have a great sound! Still adore Taylor Swift and Bruno Mars! I'm lucky I can listen to cd's while I work, so that makes the day even more enjoyable!
I miss my furry kids so much while we're gone! We show everyone photos of our babies and tell them stories about how much we spoil Hanz and Bella! Our neighbors have 2 dogs, so Shauna is kind enough to take care of ours when Mark goes w/me to CO! Hanz and Bella love going into their backyard to play with Kaleb (German Shepherd) and Colby that is a lab mix I think! Look @ my little Ewok! He's mommy's angel!
Last weekend we took Hanz to the Vet. for an allergy shot, as he tends to chew on his paws. While there, the Vet. asst. confessed to us that she just had to take a photo of Hanz when she had him in the back room to weigh him, because he's so cute! I had put a pink bow on Bella's collar, as she won't keep them on her ears and she's a girlie girl like her mommy! She was a big hit and got lots of compliments! Wonder if she'd let me paint her toenails pink? It's all about them in our household! I have to say, Mark is really the heart of our home! He works full time and then comes home to take care of three monkey's as he likes to say! He feeds, bathes and grooms Hanzarella and we both adore them and they sleep with us! They are great therapy for me to get my mind off all my medical stuff!
Bella has always been very vocal, and until we got her, Hanz rarely barked! Now, if Bella hears a horn honking on TV she jumps off the couch and starts barking! We let them out for a while when we get home from work and it's so funny watching them running in circles "doing doughnuts" in the front yard!
Ok, back to CO! As we were on our way to leave Swedish, we ran into Darlene, one of my favorite admitting clerks! Hadn't seen her in a while, so it was nice catching up with her!
Mom and Vicente had driven us to the airport for this trip, and Vicente surprised me with some extra cash to get myself something special! Is that cool or what? I have been wanting to return to my cross stitching hobby, so I asked Mark to take me to Fanci Mats and More in Littleton, CO! They are now under new ownership and I had e-mailed them ahead of time to request what I wanted! Here is a photo of "Buddy" (a black Shih Tzu) that the owner was babysitting! What a cutie!
Buddy is a little hard of hearing and couldn't see well, but he seemed to get along great!
Here I am in front of the cross stitch store! Turns out the owners name is Cindy, and she didn't have the lambswool I needed or the pattern I wanted called "A Good Marriage", but she is ordering it for me! I haven't stitched since we got Hanz four years ago!
We have a running joke in our family since we once saw an A.D.D. t-shirt in the What On Earth catalog where the words on the t-shirt start to say something, then the A.D.D. person get's easily distracted and the print of the t-shirt goes on with, .... "Oh look, a chicken"!! I think everyone in my family has A.D.D., so that's why I can joke about it!
Speaking of t-shirts, saw this one @ the Houston Hobby Airport - we wanted Starbucks, but settled for Dunkin' Doughnuts!
Our flight was to leave CO, head to OK, then Houston to Corpus Christi, TX. The flight attendant named 4 passengers (us included) that may not make their connecting flight once we reached Houston. Mark immediately texted our friend Dorinda that lives in Pasadena and she offered to drive us home to Corpus Christi if we needed! Do we have awesome friends or what? Luckily, we were able to make our flight, so we got home on schedule late Thursday night!
Ok, I think I'll finish off this blog entry w/some images I got off of Facebook!
Speaking of Facebook, Shalon mentioned that Dr. Yakes was in the United Kingdom recently, where an avm patient had read her blog as well as mine and was able to see Dr. Yakes while he was there! That makes me feel great, just knowing someone out there is reading and maybe benefiting from the experience that both Shalon and I have had on our avm journey's! I love handing out the card to my blog site, so that people can better understand what having an avm is all about!
Woke up this morning and noticed there was blood on my pillow case. Once I was up I saw a streak of blood on my cheek and had coagulated blood in my mouth. UGH! This is what I'm still having to deal with, but @ least I can say that once I rinsed and brushed, it was ok. I'll be so happy when the bleeding stops completely!!
As always, I love hearing from anyone out there than has any questions! You can e-mail me at either dulce@grandecom.net or schumancynthia@gmail.com!
Thank you everyone for joining us on this journey! Next month it will be 10 years that I've been a patient of Dr. Yakes - I can finally see the light @ the end of the tunnel!!! Much love to all of you!
Cyndi
I really try and not let having a bleed overwhelm me, but somtimes that's so hard to do! I can't live in fear 24/7 of having a bleed, so I carry on the best I can, knowing God, my faith, family and friends are helping me through this!
P.S. Had anyone noticed that I had titled this blog entry w/the year 2012? I just caught that today and corrected it!
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