Denver 39 Continued...

Hi again! This is the perfect time to blog, because Mark and Hanz have gone to Home Depot! This way Hanz won't be under my feet wanting my attention and I won't have to hollar @ Mark to distract Hanz so I can write!

Unfortunately, I've been having a bit of a tough time lately and I'm not too thrilled with that! While we were with Dr. Hepworth I told him how much my ear had been draining fluid and that sticks to my hair, ugh! He prescribed something that he mentioned we may have a hard time getting filled, because it needed to be compounded! That was an adventure in itself! Celia finally found the one pharmacy that would do it and then she had to put a rush on it because we were leaving early in the afternoon the following day! Before leaving Hepworths office, we asked for his P.A. Kris so we could be sure and say hello to her! She is a Twi-hard, so I wasn't about to not chat w/her about Eclipse! Sure enough, she had already seen the movie a couple of times just like me! Kris is an awesome person - she gave me a big hug and spent some quality time talking to Celia and I!

Now we're off to run some errands! I think we checked in to the hotel, then I had to make sure I pick out snacks that I could take with me to the hospital for when I'm stuck there on my own and get hungry! I always get some oatmeal, raisin walnut cookies from Safeway and this time I got those new rectangular crackers filled with cheddar cheese - yum! When I'm finally in a room and able to eat - watch out! Some juice and snacks until the dinner tray is brought!

Went to what I call the "happiest place on earth" - Wal-mart! Celia bought me a couple pair of pajamas to take to the hospital with me! I wasn't able to wear them though - since I was having some drainage, I didn't want to get that on my new jammies! :( Poopie! Course I got a couple new kerchiefs and a few other items! We went on to a place that Celia and Mom found a few visits ago - I think it's called Sams and it's an old fashioned diner of sorts. Very reasonable and good food! Had dinner there and played Farkle on Celia's I-pad while we waited for our dinner!

Couldn't wait to get back to the hotel and just relax! We settled in for the night, called our hubby's and Mom and turned in!

The folllowing morning, I didn't have to be @ Swedish until 9:30 a.m., so we had plenty of time to get organized! I repacked my suitcase so that I would have everything I needed with me while I stayed overnight @ the hospital! Pre-registered and went to the waiting area and got called in right away to start the process. Actually, when I first walked in to the hospital, I ran into Zufan, one of the techs that has been assigned to my floor in the past and she gave me a big hug! She reminds me of Saba - in fact, Celia thought it was Saba, but I knew it was Zufan! Here is a photo of her with me a few procedures ago - so pretty and sweet! I have to say that the nurses and techs - everyone @ Swedish is phenomenal! They really are - they make you feel special and well taken care of for the most part!

Well, it seems I was just feeling overwhelmed about everything and by the time Dr. Yakes P.A. Kelly came by to see me, I was all teary. I could tell by her expression that I really caught her off guard! I'm normally all cheery and enthusiastic, but for some reason, I felt overcome by sadness and it really showed. There won't be that many photos from this trip - I just wasn't in that kind of a mood I guess. At one point I got to meet Mandy, Dr. Yakes new P.A. and we didn't even get a picture of her! I started getting anxious, so I was given a valium. Later, I remember being wheeled into the surgical room and Celia of course was still with me. The OR nurses had told Celia it was ok to be in there and then I saw Quinn, the Anesthesiologist! I said hello and made a comment about why she didn't come see me earlier like she always does before the procedure. Apparently the valium didn't allow me to remember that I had already spoken to Quinn, ha, ha! Then I see Dr. Yakes, he came out to where I was and Celia told him, "Take good care of my sister"! So Dr. Yakes tells her, "Oh yes! She's my Muneca"! (not sure of the spelling, but that word means "doll" in Spanish! I complimented Dr. Yakes on losing weight and he said he had lost a little bit. He really looked good - wish we had gotten a photo! Since I had slept before being taken to OR, I was in dire need of making my bladder flatter, so I got up off the bed and went down the hall! Next thing I know, I'm waking up in recovery and my back is killing me! I had woken up that morning with back pain already, because I always sleep propped up on pillows and another pillow under my knees for support - and of course I wasn't going to get my pillows stacked just the way I have them @ home! So I try and pull myself holding on to the side bars of the bed, so that I can be on my side and eliviate some of my back pain! Right away the nurse tells me I have a groin stick from the angiogram, so I have to keep that one leg straight - no problem. I was feeling ok - needed something for pain of course, and I could feel that my face was oozing from the work Dr. Yakes did. I asked the nurse to please dab the area or put something on there to catch that, so she put a big piece of gauze on there. Course later it was all stuck on there and looks terrible, but it's all part of the process! It actually didn't seem like I was in post op too long, and was able to get out of there in a decent amount of time. Unfortunately as if often happens, there is no room @ the inn - so I was taken to an area like ICU (maybe called PCU or something?), so I didn't have an "actual room", but was in a glass enclosed area right near the nurses station. There was a tv in there, but other than that, I had to use the bathroom down the hall. I felt better once I was able to sit up and have some ice chips, water and then juice and a cookie! Wasn't sure I would be able to take a shower, but I knew I would feel better if I washed all the blood out of my hair! I was having some oozing from the needle stick area that I felt we had to keep dabbing - in the past, we've thought it's some of the alcohol that traces back out when Dr. Yakes pulls the needle out. This leakage has "burned" my skin, so we didn't want that happening, so for a while Celia kept up w/dabbing it until the nurse was able to get the dressing changed. I was busy trying to eat a cookie and drink some apple juice! Celia stayed with me until I took my shower and got settled back in bed and medicated some more before she even thought about going back to the hotel. She has been amazing @ keeping my spirits up and giving me lots of love and support! Besides Mark, Celia is the one that understands completely what I'm going through! The difficulty of it all, be it emotional or physical!

Of course I have to sleep with the mist cup on my trache - when I'm in the hospital, I request a warm mist, so that's a nice change from the regular cold mist I get @ home on the humidifier machine! After a closer look, I see I ended up w/a big blood blister on my face - UGH! I told the nurse that before I left the hospital, I wanted that taken care of, so I wouldn't have problems with it on the plane! Our "normal routine" consists of the P.A. "discharging me" the night before - they sign all the papers necessary and put my prescriptions in my file, that way I can leave first thing in the morning and not have to wait on them to come release me! Well, I had great nurses and techs through the night, but the following morning, the nurse called the wound care tech, Pam, to come take care of that blood blister! Celia and I wanted to leave the hospital early, since we still needed to repack our suitcases and pick up those ear drops that were being specially made @ the one pharmacy! The nurse called the wound care tech several times, before Pam finally made it known that she was not going to touch me. She has dealt with me before, and I think I have scared her with one of my "bleeds" when she's worked on me! Pam wasted over 2 hours of our time before she made it known that she would not work on me! We barely made our flight! Once we arrived in Dallas, that flight kept being delayed and moved to another gate several times! We were supposed to arrive home @ 9:30 pm and ended up arriving 2 hours later! Mark always brings Hanz to the airport knowing I'm anxious to see my little angel!

All in all, it was a productive trip I suppose, but we were very happy to just get home! Speaking of getting home - Mark and Hanz came in earlier from being @ Home Depot! I hear that everyone loved Hanz and was petting him and enjoyed seeing him @ the store! Mark had said he would pick up Pizza State for dinner, so that they did!

My next procedure is scheduled for Sept. 23rd. I will only see Dr. Hepworth every other time I have an embolization - as he is very happy with my airways being very clear! I'm wrapping this up so I can go rest and get more reading done! Hanz is sleeping on the stool next to me and Mark is wrapping up working on a leak he found under the house!

Thank you everyone for all your prayer, love and concern as we go on this avm journey! I can't wait for this to be all over with!

Oh! I have to tell you something! Soon as I got back, I was wanting to make an appt. to go to wound care and get that blood blister drained in a sanitary, controlled environment! Called my primary care doctor that faxed an order in. When I saw the wound care tech, he was NOT wanting to touch it. He says, "you mean they did this to you in the hospital in Denver and then they didn't want to take care of it there"?! He would not touch it until he got the ok from Dr. Yakes people and from my pcp doctor too! The tech had asked what he was supposed to do with me if I bled, take me to the ER? I told him to just put pressure on there if it bled and it would be ok! The wound care technician said he had been doing his job for 15 years and had never come across anyone like me. Told him he probably never would again either. We (avm patients) are few and far between and baffle the best of 'em! I've had enough procedures/embolizations that if I'm put on a floor @ Swedish that isn't familiar w/avm patients - I know what to ask for to make sure I get what I need! The time I had my trache, I had an emboization first, and then when I had the trache - there went the instructions for the meds! The original "orders" were ignored and the new orders were followed, but I was still needing the meds from the embolization! I started noticing that I wasn't hearing the word Decadron and I knew that was the steroid I needed to reduce the swelling! I won't retell the whole story, but I went through a LOT to get what I needed!

Back to the blood blister on my face - well, it ended up just being some congealed blood under there, so he cleaned it up and put a dressing on it and it's fine! I cover it up for work because it looks terrible and to keep the dust/germs out! Sigh.

Keep in touch y'all!

Love,

Cyndi

Denver 39

Hi Everyone! How are you? Wow, it seems forever since I've blogged! I hope all of you are as well as can be expected and are taking good care of yourselves and each other! Please don't take your health for granted and sit back and realize how wonderful it is if you feel good!

I was really looking forward to this trip, since I had not had an embolization since March! I had opted to take "a break" after that embo in March had me not being able to swallow for 4 days! Plus, I knew that the folllowing trip to Denver would be for a "debulking" and I was not looking forward to that! A "debulking" per say, is where Dr. Hepworth would be getting rid of any fluids, tissue or glue-like substance that was bulking up my face and didn't serve a purpose anymore! Past doctors had tried to stabilize my avm w/a glue-like substance, so Dr. Hepworth was going after things like that to reduce the mass and clear my airways! That was a tough procedure to recuperate from - it took more out of me than the embolizations do! One of the things about avm's, is that you can't take much of a break from having them worked on, or the avm will start to get ahead of you! About 2 weeks before my recent trip to CO, I started to have some bleeding from inside my mouth from the avm. If I brushed my teeth in that area, it would start to bleed. Luckily these bleeds don't last long, but they are severe enough that the blood is flowing and a bit scary! I just had one yesterday on my way back to work after lunch! I was driving and stuffing my face with one of those individually wrapped cherry turnover things - it had been in the fridge and was hard and I probably hit the inside of my mouth and here comes the blood! My mind is racing thinking, "Do I keep swallowing the blood, or pull over and try and spit out and make more of a mess"? I opted to keep swallowing and took a swig of my soda. Got to work and told them I was leaving for the day! I did not want to have blood breath @ work and I knew I just needed to lay back, rest and let that moment pass! Ok, let me go back to the beginning!

I was also happy about this trip because my sister Celia would be going with me! We've really grown closer lately and we've always had fun when we got along! She's always made me laugh so much and she takes great care of me! Now that her boys are grown, it's easier for her to accompany me on these trips! Plus, that meant that my Hanzie would be able to stay in his home with his daddy Mark! I missed Mark and Hanz so much while I was gone, but I knew they would be fine on their own! The first thing I notice after being too far away from home to go back, is that I have left the house w/no kerchief on my trache! Dang! Last time I had forgotten to pack extra drainage sponges - the little cloth that covers the trache area. No time to do anything about it, until we arrive in Dallas and we slip into a western store to see if they have any! Of course they do! For $10 each! Ouch! Celia wanted me to get several, but I only took the one to hold me over until we could find a Wal-mart where kerchiefs sell for a dollar!

So we arrive in CO on a (I slept most of the way there!)and both of us were HUNGRY! Picked up our car rental and headed for Park Meadows Mall in the Lone Tree area to go eat @ the Cheesecake Factory! Would you believe we got all turned around (even w/one of those portable gps systems) and could NOT find the entrance to where the Cheesecake Factory was?! How frustrating! Anyway, we eat and then shop of course - and visit a shoe store we like where Celia bought some shoes! The guy remembered us (who could forget my face)! Last time we were in CO - Mom, Celia and I all went to the store and Mom had bought shoes! Anyway ran some errands and then headed over to Dr. Hepworths for my check up! I was concerned that I had a "little flap" of skin hanging from the hole where my trache was, so I asked him about that. He said it was a "blister" of sorts, and got that cauterized and took care of it. Changed out my trache tube for a new one, so that was good! Plus, he said he would bug Swedish to send me home w/a brand new trache tube to take home! See photos of Hepworths visit and the $10 kerchief on my lap!

I think I'm gonna wrap this up and continue blogging later! Dr. Hepworth was very happy that the debulking did just want he wanted - made my airpassages as clear as possible. He was concerned that I was disappointed that I didn't look better after a debulking - like the mass would be smaller. I figure @ this point what's the use to worry about what I look like, you know? As long as the avm is under control . Dr. Hepworth did mention that he and Dr. Yakes have agreed that I need @ least another 6 - 8 embolizations before they will be ready for another debulking - that is another year right there! That was the first thing my mother-in-law said. At this point, I'm LUCKY if I only have 3 years to go - that is just a very rough "guess-timation" on my part! I would like to mention that Dr. Hepworth has such an awesome bedside manner! He is so optomistic and makes the patient feel completely @ ease and as if they are in the best hands possible! Right before he left the room he says to me, "Thanks for smiling"! I'm just happy that HE'S happy with what he is seeing as far as my airways are concerned! You just can't help but smile when you're around Dr. Hepworth, he exudes comfort and confidence!

Ok, signing out so I can snooze, eat and play with Hanz! Back soon!

love,

Cyndi