March CO

Hi again all! For any of you that are fairly new to my blog and not familiar w/what an avm (arterio venous malformation) is - it is not a good thing to have! It's basically an abnormality that a very small percentage of our population has or is familiar with. A doctor can go his whole practice and not see a patient w/an avm! This thing has a mind of it's own and Dr. Yakes and I have to keep ahead of it and not let it get ahead of us! There is profuse spontaneous bleeding @ times. It is a very slow process having these embolizations every 7 to 8 weeks in Denver @ the Swedish Hospital where Dr. Yakes practices medicine! I probably won't look very different until all the procdures are done and once I get a clean bill of health (in other words, got all the avm) then there will be reconstructive surgery to put me back together hopefully what I used to look like! If you get a chance, please do visit another blog that belongs to a fellow avm-er, Shalon Whitgob! Her blog is really informative and she has completed all her treatments and inspires so many of us avmers out here still waiting to be done w/our treatments!!!

I was looking forward to this trip to CO because I wanted Dr. Yakes to work on the area inside my mouth where I had some bleeds recently. When Celia made the plane reservations, she got what was available and that got us into CO about 3:30 p.m. The weather was fantastic - in the 70's, yay! We were hoping not to have to deal with any snow on this trip!

The ladies in Admitting @ Swedish Hospital leave @ 3pm, so we were told to go straight to Dr. Yakes office, where one of his P.A's. Mandy went over my medical history and had me sign consent papers. She then walked us to ER where I got my hospital bracelet. By the time I got in a room, it was already 7:30 p.m.! See the towels on the shelf in my room? Last time I was @ Swedish, I got some fancy soap, shampoo and lotion from Aveda I think! Celia went across the street to eat dinner @ a restaurant called the Copper Pot (comfort food) and took several photos of the menu with her phone to send me! Unfortunately, the chicken pot pie I ordered never got tasted, as I was feeling nauseous.

Had the best nurse name Kurt that got me settled in. The lab tech came by to get a blood sample, but now w/my mediport, they can draw it from there and I don't get poked w/a needle! A couple of respiratory techs came by to check my trache and to see if I needed any supplies.

I asked for Saba and heard she was still out on maternity leave for a couple more weeks! Everyone @ Swedish is super friendly, so I always feel very comfortable there! Every person from every department that came into my room was very welcoming - it is amazing how much better you feel just knowing that someone really cares! Kurt even mentioned that although he knew there was no way Dr. Yakes could have hand picked his patients, he says all Dr. Yakes patients are the best, so they really enjoy taking care of us! I told him it was probably because we are so grateful to have found someone to help us medically when no other doctor seemed to know how to handle this! Mine especially, because it is facial and very complicated and extensive! Another of my favorite nurses came by to say hello, Dave LaBadie! He is always so enthusiastic and is excellent @ his job! I finally got in bed and tried to get some rest. Celia went back to the hotel and showed up again early in the morning! Meanwhile, by that time I had already been visted by the doctor for disease and control a couple of times and was told to stay on the IV antibiotics until the 24th of this month! He also mentioned that my electrolites were all over the place, so they worked on getting me all balanced out as far as my potassium, calcium and iron too!

Actually, Celia was in the room when that doctor came in the second time and she was writing down the instructions that this doctor wanted me to have done here w/my local doctor. He noticed Celia writing on a NASA notebook and that really got the doctors attention! Apparently, his first career choice had been to be an astronaut and not a doctor, so he enjoyed seeing all the photos Celia had on her I-pad of her brother-in-law, Astronaut Mike Fossum!

I was finally taken to surgery about 11:30 a.m. I told them to hurry as I needed to be out of recovery in time to watch American Idol, ha, ha!

The OR staff is fantastic, although I wasn't too familiar w/the anesthesiologist. I usually get Quinn or Wendy! Speaking of Wendy, I had just missed one of Dr. Yakes patients w/the same name that comes for treatment from Canada, as her avm is in her upper pallet! Celia mentioned that the cleaning lady had told her stories of other patients that were even worse off than I was (one patient had the avm on her tongue!) and they were helped and healed completely with Dr. Yakes help! Hearing stories like that encourages me in knowing this experience will all be over with someday!

I saw Dr. Yakes for a few minutes in OR, before I was put under. Next thing I know I woke up in recovery and barely remember how much time I spent there before I was taken back to my room. I did have to stay in bed a bit longer due to the angiogram (groin stick) before I was allowed to get up and walk around on my own.

Kurt had asked if I had my flu or pneumonia shot yet and since I hadn't, we took advantage of getting that done while I was there! We normally get these @ work, but I don't think the budget allowed for it this year and I just hadn't gotten around to it!

Celia was thinking we needed to stay an extra day, since I had been taken to surgery so late, she wanted me to have plenty recover time before having to board the plane by noon the next day! A couple hours after being put in the room, I was feeling a lot better, so we kept our original plans to fly home Thursday and arrive about 7pm that evening!

Dr. Yakes used 21 cc's of alcohol and I can tell he worked on the inside of my mouth on the left. My left eye is swollen shut and of course the rest of the left side of my face is swollen.

I feel pretty good considering just having an embolization, so life goes on as usual! Thanks again for all your love and prayer!

Cyndi

I may add a photo or two when I can. I think Celia took some w/her camera!

Latest Adventure

Hi Friends and Family! I've been wanting to sit and blog to fill you in on the latest happenings on this avm journey! Seems last week I started feeling some pain along my left jawline, and made an appt. to see my primary care physician on Wed., Feb. 7th. He started me on some oral antibiotics, but by that evening, my pain was great enough that I took the strongest pain killer I have - an Oxycontin. My doctor had already scheduled me to have a transfusion due to the several bleeds from my mouth I had earlier in the week. The following morning, Thursday, I took another Oxycontin before work and headed over to the Cancer Center to be cross matched for the transfusion I was scheduled for on Friday. After leaving the Cancer Center, I stopped by a convenience store to pick up a cappuccino and a cinnamon roll and headed to work.

I still need to talk to a couple of people @ the office to put the pieces together, but apparently I collapsed @ work, approx. 10:30 a.m. From what I understand @ this point, a supervisor was walking past my cubicle when he heard a noise and came to investigate. I must have hit my tailbone on the corner of my desk on the way down, because that is still hurting almost a week later! Next thing I know, that supervisor is asking me if I can hear him and I remember looking into his eyes, but it was just not registering! Everything happened so quickly, my friend and co-worker Diana A. called Mark and told him I had fallen and he needed to come to my office. Mark called Celia, my co-workers had called the paramedics that showed up w/an ambulance on the way! By this time, I struggled to get up off the floor and sat on my office chair. I didn't think it was necessary to be taken to the hospital in an ambulance, but the paramedics strongly suggested I be taken either to the hospital or to my doctor. Mark showed up and my supervisor Zan suggested I go sit in Administration on the couch until Mark was able to gather my things so we could leave. I remember Celia showing up in Administration and talking to me. Everyone was so helpful and acted so quickly! My supervisor Zan kept talking to me while Mark was getting my things, then I remember being wheeled out the front door in an office chair! Headed right to my doctors office and he immediately decided I needed to be admitted to the hospital. Since there was no room available right away, I was able to go home and lay down a while until the hospital called telling us the room was ready. I packed a bag and we headed out. All this was taking place on Thursday, Feb. 9th.

As you can imagine, I didn't get any rest that first night. I was immediately given 2 units of blood and started on IV antibiotics.

By the following day, my doctor strongly suggested I get a mediport put in, since I keep getting these infections, that way my IV Antibiotics would be administered through that. This would be taking the place of the pic line I used to have when I was getting outpatient antibiotics.

I'm continuing this several weeks later, so I'll try and condense it all. I ended up being stuck in the hospital for 5 days! I probably could have been let out earlier, but the weekend made it hard for my doctor to get everything lined up for me that I needed. I missed my furry babies soooo much! That was the hardest part for me! l was always torn between wanting Mark w/me @ the hospital, or sending him home to be with Hanz and Bella so they wouldn't be home alone too long!

I have the most fantastic friends and family! My family visited alot, and I got calls from friends! Got a surprise visit from my nephew Mark on Grammy night. I was just sitting around watching TV, when he walked in w/a gift bag in his hand. We had a fun visit and he had brought me the movie "Breaking Dawn Part I" that included a huge poster from their wedding made of fabric! I got Mark to help me put it up on the wall right away and got lots of comments on it from hospital staff!

Speaking of hospital staff, one of the nurses came in the next day and asked if some interns could come in and ask me some questions. I agreed to it and started telling them about my AVM. Next thing I know, they left and came back w/5 more students, including their teacher, so I had a room full of interns all asking me questions about my avm! The charge nurse walked in later and asked what was going on, so I replied, "Apparently I'm teaching a class"! I referred them all to this blog and to Shalons, so they can be aware of people that have avms! I had read a statistic somewhere that said a doctor can go his whole practice and never see anyone w/an AVM - so I really want to educate everyone about this, since it is so rare!

I'm now back to work and still trying to get rid of these pseudomonous infections I keep getting from the open wound I have on the left side of my face! The wound is looking really good and healing well, thanks to the fantastic wound care techs @ Dr.'s Regional Hospital! They are all extremely professional and courteous and always make me feel comfortable!

Celia and I will head to CO in less than 2 weeks for another of my embolizations! Here's hoping we have good weather - we don't like dealing with it snowing!! She and I always have fun - poor thing, she tries so hard to make me feel better for all the suffering I go through! The best part of her going with me, is knowing my babies are home with daddy! I'm hoping the trip after that, I can get my co-worker Cheryl D. to take care of the kiddos again for us while we're in CO! She has a beagle named Prince that got along well with Hanz and Bella! Cheryl has a rack of shoes in her living room that I fear for, knowing Bella like I do. Don't know how Bella mangages to always find something to chew on that she shouldn't be chewing on!!!!

I have to just mention how well Mark takes care of all of us! He puts in a full day of work, then after both of us rest a little when we get home, he administers my IV antibiotic, cooks a delicious dinner that he serves me, feeds Hanz, Bella and Midori (outdoor siamese cat) and then finally sits down to eat. I'm never feeling 100% and the last thing I want to do is clean up the kitchen, so Mark does that as well! The only thing I really can help w/around here right now is the laundry! Mark does his best to keep our household running while taking care of our little family! He bathes the dogs, cuts their hair, feeds them and takes time to chase them around with the toys they have in their mouth! Whenever time and weather allow, Mark takes them for a good walk in our neighborhood! I tried going w/them the other day and I was hard to keep up! Hanz and Bella are an important part of my recovery - they make me so happy and are very entertaining, so that keeps me going! Unfortunately, Hanz has a habit of climbing up my chest while I'm in bed, and his paw lands right on my mediport - ouch! He wants me to scratch his back - does he have me well trained or what? While I'm doing that, I'll say, "Oh my name is Hanz and I like my butt scratched"!They're so adorable, I've gotten in the habit of giving them a treat when I get in from work, so they expect it now and will jump all over me until they get it!

Ok, I've gone on long enough. Oh! One more thing - I finally made it to church last week and was happy to see many of my friends from Choir! They are all praying for me and I appreciate that so much! Love to everyone! Thank you for all your support, love and prayer!

Cyndi

Short lived luck

Hi again folks! Well, guess what? Couple hours after I last wrote, I was talking to Mark when he noticed a trickle of blood coming down my chin. That turned into a full bleed and I really had to pack my mouth trying to stop the bleeding. Hard to tell exactly where it was coming from and certainly difficult to apply pressure. It had stopped @ one point, but I pulled the packing out too soon and it started bleeding again! UGH! I was so darned hungry too! Mark had made some Starbucks Christmas blend coffee that I was really wanting to drink! I had to be soooo cautious all day long. This is soooo disappointing! On the one hand, it ruined my entire day. Had to call Nurses on Wheels to come change my pic site dressing since I got blood on it. There is no telling whether this will happen again @ all anytime soon, or in an hour! I didn't get a chance to do much of anything today from just trying to take it easy after that bleed! Now, I'm going to be worried about this happening @ work tomorrow. I just felt w/as much alcohol as Dr. Yakes had used this past embolization, bleeding was the last thing I would have to worry about! This avm has a life of it's own. I'll keep you posted.
Cyndi

Post January Denver Trip

Hi Family and Friends! How is everyone?! I'm super excited to tell you that for once in a very long time, I'm actually feeling half way human so soon after a procedure. Seems the last few embolizations found me with complications that were making my recovery extremely difficult, but this time has been much better! I still have good and bad days - still some weakness in the legs, but able to function without being so completely dependant on everyone around me!
When I arrive @ work, I always park in a handicapp spot and need that ramp to pull my "cart" that is full of my meds, snacks or anything I need that can make my life easier while I'm @ work! Unfortunately, when a friend joins me for lunch, we sometimes go back in the building through the back enterance and that means climbing 4 steps up to the door - ouch! Steps down aren't too bad, but going up is still a challenge for me right now. My primary care doctor here says that is caused by all the pain pills and what I'm going through.
Had some lab work done earlier this week, and my potassium level is good now. Unfortunately, since I was concentrating on that, I was neglecting my iron tablets - I'm anemic. Plus gotta remember to take calcium too, since being on those steroids all the time affects the bone density. Had a test for that not too long ago and it was ok.
Plus, there's always the fun of having to sleep w/that darned humidifier on my trache - if I cough during the night, I sometimes wake up w/phlegm on the cup cover on it or even on my chest. Grossss! I know, I just like sharing my experiences with you - I've definitely had it worse, but it sure isn't your basic nights sleep around here either! Right now I'm having the battle between the steroids and the Xanex! The steroids I'm decreasing by 5mg every third day (that helps w/the swelling after a procedure), but they wind me up, where I sometimes find it hard to relax enough to go to sleep. That means having to take a Xanex to take the edge off and relax. Course sometimes taking a pain killer makes me drowsy, but luckily, I don't have to take too many of those @ this point! I'm actually trying a new blood pressure medication - as the one I was taking contained a diuretic and Dr. Yakes staff in CO, felt that was contributing to lowering my postassium level. Whew! If it's not one thing it's another! I'd better get back to bed to read or watch TV until the meds kick in! It's 4:30 a.m. and I had gotten up because it was a little too warm in here when I set the temperature @ 74 degrees! We don't like it cold out here in S. Texas!
I'll try and include some new photos here soon! Love to all!
Cyndi

8:00 a.m. Well, I sure know how to jinx things! Had headed back to bed and was happy to see one of my favorite movies had just started - Legends of the Fall, so I settled in to watch that. Woke up a couple hours later to find I had a blob of blood on my lip. Darn! After further investigation, I saw the blood had actually already made it down to my top sheet - poopie! Luckily, I didn't have what I call a "gusher of a bleed", but it was enough to disappoint me darn it all! I just hope and pray that there won't be any more episodes. I know this happened before and after speaking with Kelly, Dr. Yakes physician asst., she said it could be from the "alcohol" still settleing in, or whatever work was done in that area. Hmmmm...... please keep the prayers coming. We need all of you with us on this journey. Thanks.

January Denver Trip

How is everyone? This trip, Mark accompanied me to CO., and we took off from Corpus Christi about 6:00 a.m. Tuesday morning, Jan 17th. Arrived in Denver a few hours later to find it was 10 degrees there, yikes! There was snow and ice on the ground. We had a high of 80 degrees the previous day here in Corpus! Anyway, I had been concerned over a slight cough and had to get some phelgm out - gross, I know - but was hoping it wouldn't affect my procedure the follwing day. Turns out during my Nov. procedure, I had a sinus infection and was so congested I was miserable when I woke up in recovery and did not want to be repeating that experience! We decided to go see Kelly, Dr. Yakes P.A. @ Swedish, to ask if there was anything that could help me out. She wrote me a prescription for an inhaler and some Musinex over the counter. I asked Kelly if any of Dr. Yakes patients had lost their mind before finishing all their procedures, because I felt I was 3/4's of the way there! She told me no one had yet! Course I did kidd her about whether she would be answering the question truthfully! For me, most of my "fear" with this avm, is of the spontaneous bleeding. Scary not knowing when that will happen, for how long and whether we can get it under control! Don't want that happening @ work either! For some of you that may not know yet, I have been moved to the main probation office on Trojan Sreet. So now, my job is in the background and not @ a front desk where I have to answer phones and greet the defendants! This area works much better for me and I can go @ my own pace and am very comfortable, considering all I'm going through! Lots of computer work/paperwork! My supervisor and HR director have said they will accomadate me in any way they can, so that helps a lot! Especially the next few days, since the IV Antibiotic is done 3 times a day, I need Nurses on Wheels to come by and do the mid-afternoon dosage! A culture was taken right before I made this trip to CO, and it was showing it was still positive for a pseudomonous infection, so that meant meeting with the Infectious Disease doctor in CO - and he put me on a different IV antibiotic for another week! Mark does the morning and evening dose and each takes 30 minutes. (see photo of what the Nurses on Wheels call a "grenade" IV - this is super handy - once Mark hooks up the blue part to my pic site, I can walk around with that "grenade" in my pocket until it is done)!

Back to the avm, course right now I seem to be having problems controlling these pseudomonous infections - once the wounds heal on the left side of my face, that should stop! With those infections, come the IV Antibiotics and I really dislike having that pic site on the back of my upper right arm! It makes taking a shower difficult, as I need to keep it dry so I won't get an infection in that area. I also try and not wet the wound on my face, (even though wound care techs say it's ok) so that makes taking a shower a challenge!

Headed to my ENT appt. the afteroon we arrived to make sure all my air passges were clear. Had some numbing spray put up my nose, so the doctor could insert the thin hose that would show him what was going on up there. Ugh! Everything was good, so that was great news! We had that doctor put my new trache in that I usually get done during the procedure - that way any hacking I had been doing wouldn't have clogged my trache tube.

Then headed to Whole Foods to get something for dinner to take back to the hotel! We finally used the gift card our friends Jon and Felice gave us a while back - thanks so much!

I should have listened to Kelly and Mark when they suggested I spend the night in the hospital before my procedure the following day. What was keeping me from doing that, was not likeing having to drag that IV pole w/me every time I need to go to the bathroom! Unfortunately, neither Mark nor I slept well. That hotel bed is too soft and I have to sleep almost sitting up due to the avm, and kept sliding down the pillows Mark had stacked up for me! I also sleep w/pillows under my knees for support. (I am really enjoying my hospital bed @ home! I can adjust that just right! Some times during the night when I'm more asleep than awake and trying to figure out why I can't move my legs - I find it's Hanz and Bella come to sleep with Mommy! I love my iddybooboos! They spend time with Mark on the couch too! Poor Mark, we haven't figured out how the best way or place for him to sleep. He doesn't like the sound of my aircompresor/humidifier that I need to sleep with on my tache, plus w/the steroids, I'm sometimes up late and that doesn't help him get a complete night's sleep!) Got up about 5 a.m. the day of my procedure - couldn't stand the bed anymore and I had some lower back pain going on from that soft bed. We reported to Swedish @ 6:30 a.m. to get registered - the two ladies that register patients are super nice and always cheer me up!

Later when some blood work was taken, my potassium level was too low to go ahead with surgery! The P.A. and nurses got me some IV Potassium, so I had to wait another hour and get more blood work done to see if my level was up enough where I could have the embolization that day! Even though it was still low, it was determined they could go ahead w/the procedure. I just can't emphasize enough how nice everyone @ Swedish is! They have become like a second family to me and really go out of their way to make sure I'm being well taken care of! While I'm waiting to go into surgery, the nurse gives me a breathing treatment and sets up my trache with the humidifier to keep it moist.

I was happy to see Quinn, one of my favorite anesthesiologist would be assisting Dr. Yakes. I'm also familiar with Wendy, another anesthesiologist, I always get the feeling these ladies really care about their patients! I had been wondering if one of my favorite nurses worked there still and he popped in to say hello! Said he saw my name on the schedule the day before and made it a point to come see me! His name is Rick Smith and he's been my post-op nurse a couple times - very good to his patients! He would put a fresh gown on me and get rid of the one that had blood. Made sure I got some vaseline on my dry lips and was as comfortable as possible! Actually we were telling all the nurses once I was put in a room, how fantastic they all are!

I had spoken to Kelly (wearing black top and print skirt) about telling Dr. Yakes to go easy on me this time. Dr. Yakes came over to talk a few minutes before I was put under - Mark and I had been meaning to bring Dr. Yakes an autographed photo of Mike Fossum, Astronaut! I'm sure most of you know that Mike is my brother-in-law Greg's oldest brother! I got to tell Dr. Yakes myself to take it easy on the amount of alcohol he would inject in my face - although I know he knows best what he needs to do! He ended up using 21 cc's of alcohol - that's a lot! Right before I was put under, the doctor for Infectious Disease and Control came in (wearing a bow tie) and he told Dr. Yakes that the "black scab" on my wound site could come off. That area needs to heal under that scab. See photo of wound site before and after.

Last thing I remember, was scooting over from the bed I was brought in on, to the one in the surgery room. I had just gotten into the right position, closed my eyes and next thing I knew, I woke up in recovery and it was time to put me in a room! Yay! I didn't wake up and have to lay there miserable for the first time in a while! Last procedure I had a sinus infection and was terribly congested and my lower back hurt from laying flat due to the angiogram Dr. Yakes does on every procedure! Once I was put in a room, I slept a good while although not ready to eat anything yet. Drank some water, juice and slept. I barely remember watching American Idol, but knew it was being taped @ home on the dvr! Mark was there with me and I vaguely remember him having something to eat while watching TV.

At one point, Mark came in my room and said, "Look who I found" - I was happy to see Saba was working that evening, so I got to see her several times when she came in to take my vitals! I gave her a break and didn't take her photo like I always do! She's a good sport! Saba asked how I was doing, and told her I was tired of the whole process and wondered whether I would ever be well again. She told me I would be ok. I know she's seen a lot of Dr. Yakes patients, so I'll trust her on that! I told her I had not brought my own Saba (Build a Bear), as the past couple procedures I hadn't felt well, so I didn't want to be worried about her losing a shoe or bow! Becky is another nurse that took time to come in to see me - she's another favorite! We were telling the nurse that wheeled me out when I was discharged how amazing they all are, and she responded with, "we love our patients"!

The wound care nurse came to see me as well - Pam Locke (see photo, straight brown hair and glasses). She wrote out some wound care orders for me to give to the wound care people down here. Pam has always done such an excellent job with my wound care @ Swedish!

Somewhere in between I met with the Doctor for Infectious Disease again, and he suggested I keep the pic line so I could get more IV antibiotics! This round will be 3 times a day for another week! Somewhere between all the doctors and nurses visits, I was able to take a shower Thursday morning! Mandi, Dr. Yakes other P.A. is the one that discharged me from the hospital. She is super sweet - such a great team Dr. Yakes has working with him!

After leaving the hospital, we had just enough time to pick up a prescription @ Wal-greens, repack our bags and check out of the hotel before heading out to return the car rental! Picked up something to go @ the airport and made it in time to catch the flight! With all the meds I was on, I kept dozing off and spilling my drink, a smoothie, then a sprite - so I had the poor flight attendant busy cleaning up! Sorry!

Meanwhile, couldn't wait to land - I have a co-worker, Cheryl D. that was nice enough to watch our kiddo's while we were in CO! She has a beagle named Prince and we had run into them @ Petsmart in December when we took Hanz & Bella to get their photo taken with Santa! Happy that Prince, and our two kids got along great! I could tell all our furry kids would get along great and with Cheryl being a real dog lover, I know Hanz and Bella felt right @ home! Sadly, my dear friend Sylvia that usually took care of Hanz and Bella for us, had to put down her Bischon of 16 years, O'Bear. He was just too old and in arthritic pain - I'm just heartsick for her loss. Our condolences to her.

I'm hoping to schedule my next embolization for the second week of March and that Celia can go with me! This way, it gives Mark a break and the kids can stay home with him! I plan to go to work in the morning, even though my family wishes I would take another day or two off. Right now, I'm still very swollen and there is a little bit of drooling involved - the cut on my lip lets drool run down my chin, so sometimes in the morning, my t-shirt is wet. Haven't done much or gone anywhere, 'cept to Mom and Vicente's yesterday evening for dinner. Gives Mark a break from the kitchen and we love playing Mexican Train w/Mom and Vicente. I was ready to come home and get more rest. Have to balance out the steroids and pain pills in order to function! Got some ear drops from the ENT to help, plus need to make sure I take the daily meds, plus potassium, iron, calcium .... the list never seems to end! I desperately need to work w/my therabite, but haven't made the time, and was afraid before w/the bleeding I had been having from my mouth! Whew!

Thank you so much everyone for all your love, prayer and support! It means the world to us and we're really hoping to see the end of this avm one day! Love and hugs to all!

Mark, Cyndi, Hanz and Bella!

Jan. 24, 2012

Just had to add that I 'm so happy to be doing well so far! Hope I don't jinx it, but let's hope it's a turning point in my recovery! Went through some difficult times, let's hope it's time for some major healing with no bleeding or infections anymore! Everyone @ my job has been so supportive and helpful in every way possible! Yay!

December blog!

Hi Everyone! Hoping y'all are doing well and getting excited about the holiday season! I've been thinking about all of you and I thank you for all your prayer, love and support! I have returned to work this past week and it feels great to be functioning in a somewhat regular manner! Unfortunately, there are still a few issues to deal with - don't know why I still get a very upset stomach - the Imodium isn't helping as much as I wish it were!

I've been going to wound care @ Dr.'s Regional Hospital 3 times a week and they are doing a great job! I know it sounds terrible, but I have this "hole" on the left side of my face that probably came about like 4 or 5 embolizations ago, where maybe Dr. Yakes got a little aggressive w/the alcohol! Plus, a couple of embolizations ago, I ended up w/some black "scabbing" that needs wound care so it will eventually come off and to keep clean. It isn't actually a "scab", but no one wants that area to bleed, so they are very careful when cleaning it. Ugh. Now I walk around with gauze covering the area to @ least try and keep the elements from it! Speaking of that - remember I told you that Dr. Boynton took a culture of the wound area? Well it came back negative from that pseudomonis infection!!! Yay! Course he told me it won't be my last infection either! WHAT? I've already had several infections and it is not fun! Between the fact that I had my wound uncovered for a while and was not getting any wound care .... and I'm always on steroids, and that lowers your immune system...! Anyway, I'm feeling much better! I remember when I first got back from CO this past emboization, and I was in bed, it was exhausting just trying to scooch myself back against the pillows! At this point, once I get home from work, I head straight to bed! I used to come home and watch my Soaps that were recorded on the dvr - but no more! I can't wait to get in my jammies and get in bed w/my nook and Hanz & Bella usually join me!

Guess what? I'm a bit behind on blogging due to the many avm events. Happy New Year! Hope everyone had a safe and happy holiday season! We all met @ Mom's for Christmas Eve and had a delicious meal of ham with all the trimmings! Opened gifts and the Fossums headed to Midnight Mass! By 2:00 a.m. I was feeling miserable and packed a suitcase and had Mark admit me to Dr.'s Regional Hospital - 3 blocks from our home! I was already hurting so bad from having fallen asleep slumped over and bruised a muscle on my side - it hurt so bad just to breathe! I was admitted with dehydration, exhaustion and guess what? Another pseudomonous infection! Yikes! That was very disappointing, but it seems my PCP feels that my always being on steroids brings them on! To boot, he said it would be 2 weeks before my bruised muscle would feel better. Are we having fun yet? I was in the hospital several days and very grateful my family came to visit often! My poor Mark worked, would go home feed the kiddos and then come see me awhile! I missed my babies soooo much! The doctor on call when I was admitted right away put in an order for a hospital bed for me @ home! Yay! No more sliding down the pillows or slumping over asleep! In a way when I walk in the bedroom and see that bed it makes me sad and angry. In another way, I'm very happy because I've actually gotten some decent rest - finally!!! Please everyone, be grateful for your health! Never mind bad traffic, that darned hangnail or whatever you stepped in (ha, ha) - be present in yourself, take a deep breath and appreciate your body if you feel well!

I was still not feeling well when I was released, but was anxious to get home - didn't even have the energy to read, and y'all know how much I love that! By the following day I was feeling better and Dr. Boynton finally prescribed a pill to stop the runs! Hijole!

My brother-in-law Greg invited my Mark as a birthday gift, to go way out on a fishing trip, and our nephew Davis went along too! This was part of Marks birthday gift - as he celebrates his 52nd New Years Eve! My poor honey, I couldn't do much for him in the state I was in. I sometimes wonder if I'll ever be well again, and I dream of that day and I'll make it up to Mark! I can't wait to wear make-up again and put on a nice dress and heels, instead of living in jammies and Crocs! Anyway, Mom was nice enough to call me and ask if I wanted something to eat, so she dropped off some taquitos. I had just started to eat, when I saw a trickle of blood running down my mouth. Dang! I put the food away so Hanz and Bella couldn't get to it, then hurridly called Mom on her cell phone to tell her I was bleeding! I knew Celia was busy and it was too far for her to drive from the island, and of course Mark was way out somewhere fishing, so Mom got the call. She came over and luckily it wasn't the worst of bleeds, but it wasn't minor either. I was starving too, but afraid to eat anything! I was resting later that day in bed, when I had to hack and from the force of that, guess what? Yup, started bleeding again. Luckily, by this time Mark was home! We were able to get that under control well enough w/out too, too big of a mess, but I was still so hungry! Didn't eat anything, slept through the New Year and finally got up this morning and tried to eat a little something. Mark is trying to get some rest, also has given the kiddos haircuts and is doing wash! The fridge needs to be cleaned, it never ends does it? Oh well. I'll be home this next week - still on IV Antibiotics twice a day to kill that stupid, stupid pseudomonous infection! Nurses on Wheels comes by to clean the pic site or give us supplies or take blood samples. Not much else going on 'round here. Not sure what my next move will be. I originally had an appt. to go back to Denver Jan. 10-12 or so, but in a way, I want to wait another week or two to give my body a rest from the steroids I have to be on after a procedure! On the other hand, if I've already had a couple of bleeds, is the avm growing - we don't want it to get ahead of us! I just know I'm going to go through a lot of hell before all this gets better. Please pray that I have the strength to endure the entire process w/out going crazy or driving anyone else crazy! Love to all!

Cyndi

P.S. I just wanted to add how much I enjoyed watching The Sound of Music the other day on TV! Wasn't Christopher Plummer handsome? Both he and Julie Andrews are such good actors, you feel they are really in love! My favorite scenes are when they dance out on the patio during the ball and when they are singing out in the gazebo.

November Embolization

Hi Everyone! Did everyone have a Happy Thanksgiving? Hoping all of you have lots to be thankful for and many delicious things to eat surrounded by family and friends! Celia hosted Thanksgiving this year, setting a beautiful table, full of all our favorite gourmet recipes!!! Her son Mark helped her prepare a lot of the food, while Greg fried 2 turkeys and we all anxiously awaited Davis' arrival from CA! Mom and Vicente, Mark and I rounded off the group for a special time we all enjoyed! I was surprised I was able to stay up as long as I did and took my time making sure I tasted every dish!

This has to be one of the hardest treatments I've gone through - whew! I spoke to Mandy, one of Dr. Yakes P.A.'s a couple days ago, and even asked her whether it was just me being a "complainer" or if it seemed like this was just a tough time. She definitely agreed w/me that I had a very hard time of it. Since my previous treatment, I'd had several major bleeds from the inside of my mouth requiring me to have a couple of blood transfusions in order to "fill up my tank" to capacity! That alone is no fun. I was just getting over the bruising from the one transfusion when I needed another right before this procedure.

My sister Celia and Mark take turns going w/me to Denver and poor Celia got stuck with me this time! Normally we arrive in Denver on a Tues., then I go in to Swedish hospital the following morning for my embolization and and kept overnight for observation and released the next morning, which would be Thursday and we would fly home that afternoon. Well, since I had been having these major bleeds going on, Celia thought it might be a good idea for me to just be checked in to Swedish the moment we arrived on Tuesday - which is what we did. We all felt safer this way, didn't want to have a bleed @ the hotel and have to buy the matress like it had happened once before!

I was happy to find one of my favorite nurses would be on duty - he was one of the original "dream team" as I call the group that took care of me the very first embolization procedure I had! Dave Labadie is so enthusiastic and full of energy and an awesome nurse! Saw another favorite that came by to say hello - Zufan! The staff have become like family and always ask for my own family as well! One of the cleaning staff, is a dear and always keeps me in her prayers - it was nice visiting with her!

Next morning it's finally time to go have the procedure done, and I asked that Dr. Yakes go easy on me, even though I know he knows best what needs to be done @ the time! (He ended up using 21 cc's of alcohol - that is ALOT)! Dr. Yakes took some time to talk to Celia and I before I was put under - I commented on how I heard that my fellow facial avm-er Shalon is now "done" with her treatments! Dr. Yakes said that would be me too some day! I cannot even imagine! I will include a photo of Shalon and her husband Josh. Shalon has been instrumental in helping me w/so many avm issues! She created my blog and has been so supportive in every way! If I didn't have her, I would have probably already gone nuts wondering whether this would ever be over for me! Just seeing her go through and complete her treatments, gives me new hope to strive for the end of this journey!

Back to story .... course next thing I know, I'm waking up in recovery and not a happy camper @ all! The steroids I have been taking for the swelling have had me craving strange foods, so I've been eating a lot of dairy even though I am lactose intollerant! I had stopped doing that because I feel I develop a lot of phlegm that way, and this is where I think I ran into having some problems during this procedure! (I have to say, that the steroids also affect my sleeping - I tend to sleep in spurts, so I'm up until midnight, then maybe wake up @ 3:00 a.m., then again @ 5:00 a.m.). This doesn't help Mark bit since he needs his rest for work! The steroids are also drying my hands so badly, they are cracked and bleeding - but I need to take the steroids to diminish the facial swelling from the embolization.

The recovery room nurse assures me that my oxygen is @ 100%, so I'm wondering why I can't breathe well?! My mouth was so dry I could barely swallow. I kept putting my finger over my trache tube opening in order to try and clear my throat, as I wondered where my little white plastic cap that goes over that area is. I specifically talk to the anesthesiologist before going under, about needing that cap in order to be able to cough, clear my throat or whatever. I'm not allowed to bend my right leg, as Dr. Yakes has done an angiogram, but I grab on to the bed frame and pulled myself on to my right side, hoping that in that position I'll be able to breathe easier. It will be a while before I'm allowed to get up or bend my right leg and I just start praying Hail Mary's trying to keep myself calm. I am able to "write" the nurse a note asking for pain medication and am visited by Kelly, Dr. Yakes Physician Asst. Celia was brought in to see me and apparently, while I was under, I learned that I had problems breathing several times during the procedure - so am told I will spend the night in ICU in order to be monitored. I just wanted out of there and to be able to sit up @ an angle, hoping to be able to breathe easier!

Once I'm in ICU, I have a fantastic nurse that is doing everything possible to make me more comfortable. I'm having lots of anxiety, due to so much phlegm - even placing my cap over the trache tube opening is causing me to hack a lot and close to throwing up. Poor Celia - having to witness my suffering and trying to help in any way possible! I was afraid to "sleep" and not be able to breathe, so I would ask for medication to calm me down. I kept standing up next to the bed, just happy to not have to be in it anymore! I spent one night in ICU (Wed. night) and 2 more nights in a regular room where I was finally released on Saturday morning! See photo of me w/the last RN on duty to take care of me before being released! Everyone @ Swedish is so fantastic, caring and supportive! Celia ended up having to rearrange our flight, her hotel stay and everything in between to accomadate my having to stay extra days that we hadn't planned on! Even had a priest come by to give me the annointing of the sick - that was so great! Told me Dr. Yakes is a good Catholic - good to know!

I find out that I have a pseudomonous (sp?) infection in that open wound on my face - who knows for how long, but I'd recently started going back to wound care, since after the previous treatment, I had some black "scabbing" that I knew needed to come off in order for it to heal under there. I was put on some IV antibiotics by the Doctor for Infectious Disease and Control in CO, and knew that when I got home, the IV antibiotics needed to continue! Had a pic (sp?) line put in on the back of my upper right arm where the IV would be administered. I asked to be sedated a bit for that, knowing that would cause me anxiety.

Celia made arrangements to have Nurses on Wheels come in once I got home, before we even left the hospital, to teach Mark how to give me the IV and also to do my wound care. The IV antibiotics upset my stomach so much, so my primary care physician advises me to take acidopholus and Activia a couple times a day. I'm also low on postassium and iron and am taking calcium, so on top of all the other meds, I have to toss in a few vitamins!

As unpleasant as all this has been for me - Mark is not having any fun either! He no longer has the wife he married, but a sick individual he is having to take care of that is none too happy about what is happening to her! Pray that he continues to have strength for us and that we both survive this time of our lives! I also have to add, that both Mom and Celia have gone above and beyond (and Greg is a Saint!) in helping me with anything I need - from taking me to my primary care physician, to helping me pay for office visits, meds, helping around our house - anything they can do to make things easier for us! I couldn't ask for better family/friends as a support system - Thank you everyone! My in-laws Doris and George always keep me in their prayers as well as list me in their parish prayer book! My brother -in-law Jim and his wife Shelley are extremely supportive with prayer, financial, get well notes and generally being there for us! I have the best friends ever - always doing things to make me feel better - offering prayer, calls, e-mails and surprise gifts to cheer me up! All my aunts and uncles have either called us while we're in CO, or e-mailed me or through Mom with all their love and prayer - love all of you! I'm so blessed! I remember thinking while I was laying in recovery - that how miserable I was right then would be a distant memory later .... but dang, I am only so strong and this really took it's toll on me!

I just can't get over how I'm feeling and acting older than Mom and Vicente right now! It's been difficult to realize that my body won't do what my mind tells it to do! I'm guessing from the very strong IV antibiotics that might be causing the weakness in my limbs. I can barely raise my arms high enough to wash my hair. I have to "wrap" my IV site in plastic to make sure it doesn't get wet, otherwise I'll have a bacterial infection. My legs can barely make it down the two steps on the porch - yikes! For a while, I was taking too many oxycontin, so Dr. Boynton got me off of those by using a Fentanyl patch that would decrease in strength with time. In order for that pain patch not to burn my skin, the doctor had me spray an inhalant on the area, then place the patch over it. Apparently I "missed" an area in a line of several inches, because about a week ago when I replaced one of the pain patches, I had a burn mark on my leg that hurts alot! It was tender for a few days, but feeling better lately.

Of course my furry children Hanz and Bella keep my spirits up - they are so sweet and cute! They're mommy's angels! Here are some photos of our babies for you to enjoy! You should see how excited they get when Grandma or Aunt Celia come over! Hanz got so excited once when Uncle Greg came over, that he almost had an asthma attack! Breathe Hanz! :)

Finally the IV antibiotics are done - went to see Dr. Boynton yesterday to have a culture taken, so we can see if that infection has cleared up! Once we determine what is going on w/that, I can have that pic site removed! I am anxious to get back to work! I had called the HR person when I first returned from CO and asked whether I needed to worry about my job. Was told no, to just take care of myself! I'm pretty confident I can return to work Monday! I had a wound care appt. this morning that went very well! Was shown a photo of when I first started wound care this past time around and a current photo and can see a definite improvement in how the wound is healing! I already feel better being off the IV meds - that was what was d-r-a-i-n-i-n-g my strength! I'm used to being active, it was so hard to just give in to the fact that I couldn't do anything for myself except get back in bed to get rest!

Thanks again Mom and Celia for everything you do for me!

Cyndi