January 2013 Embolization

Hi!  How is everyone?  I've been wanting to blog for the longest time, but just haven't felt up for it and have been having complications recovering lately.  This trip I was accompanied by my husband Mark - he is so amazing, can't imagine going through any of this without him.  He takes such wonderful care of me - cooks fantastic comfort food and does everything around the house since I'm unable to do much in my situation!  As much as I want to clean or get things done, when I'm having bleeds - all I can do is sit on the couch and wait it out!

As we arrived in CO, I just wanted to go straight to Swedish and get admitted - I was feeling weak and let Mark get me in a wheelchair as soon as we walked in the hospital!  Let me say that what I'll be writing, isn't me "complaining", but trying to inform maybe a fellow avm-er or family member what I go through or what to  expect.  I would have liked to be given the heads up on lots of things and I've sure learned alot through experience!  Whenever I get home from an embolization, a registered nurse from my primary insurance calls - and a few nights ago I spoke to a new nurse, so I had to go over all the fun I'm having!  She seemed impressed with everything I do in order to stay on track, but I assured her it is a team effort to help me function!  I was telling her about the vitamins I take (iron, potassium, calcium), plus the clear Ensure to supplement my diet, as I can't always eat when I'm actively bleeding! Every once in a while I also have some Pedalite - like when I was on a very strong IV antibiotic that upset my digestive system.

Back to the CO trip - we head right up to Dr. Yakes office on the 4th floor and are greeted by patient coordinators JoAnn and Becky!  Got put in P.A. Kelly's office right away to start the admitting process.  A few minutes later, JoAnn walks in with some Chi Tea for us from the Cafe downstairs!  Yummy!  What a doll!  It really hit the spot and it made me feel sooo good! Got put in a room right away and got settled in for the night!

I guess because my levels were so low is the reason I was so weak.  Turns out my blood level and potassium level were low.  I felt like my head was not attatched to my body.  I couldn't put things together and Mark had to keep "filling in the blanks" of conversations I had - just couldn't remember things.  I remember nothing of The People's Choice Awards show - darn!

Was given potassium and a blood transfusion through IV to get me ready for having the embolization the next day.  I barely remember being taken to surgery and it seems as soon as I lay down on the surgical bed I am OUT in a few seconds!  Next thing I know, I'm waking up back in my hospital room.  Here's what I heard happened.  Apparently, Dr. Yakes had gotten up to using 16 cc's of alcohol and realized it was affecting my heart, so he stopped @ that point. He worked on my left inner ear area, so all that is black and scabbed over - ugh!  Mark hadn't seen it until this weekend - I tell him sometimes I just don't want to burden him w/every single thing I'm going through, but it is a LOT!  It's a wonder I don't lose my mind between the bleeding, infection, scabbing and ear drainage.
I hear I was woken up too early from anesthesia - apparently I was irate and was put back to sleep longer.  I have no recollection of any of this.  I had to wear a heart monitor overnight, so I had lots of wires attached to me!  Not sure what is going on w/this blog site - I'm trying to post photos, but it isn't letting me.  Sorry!  I'll keep trying!

Anyway, I got to see some of my favorite nurses - Dave Labadie - the original member of my "dream team" that took care of me the first time ever @ Swedish!  Here he is w/another of my favorite nurses - Elizabeth!  My "twilight buddy" Jill is moving to ICU - sad for me, but advantageous for their department!  I need to make her a copy of my Breaking Dawn Part 1 Soundtrack from the Twilight Saga!  She made me a copy of Twilight's New Moon soundtrack when she knew I didn't have it!

The day I got dismissed from Swedish, Mark and I headed to Sam's Diner (featured in the show, "Diners, Drive-ins and Dives") for breakfast!  Got a photo of us outside as we were leaving because we were getting snowed on!  We then headed to Barnes & Noble - I was looking for a particular book I couldn't find in Corpus Christi, and of course Colorado's B&N will carry more cross stitch magazines than our location will!

Got the car rental returned, headed to the airport and on home!  I've been having some bleeds from my inside my mouth all weekend - so I've spent it all with my mouth packed in gauze!  It just started bleeding spontaneously Friday night and I wasn't able to have anything to eat until about 10:00 p.m. Saturday night!  By then I had tried to remove the packing several times, but kept starting to bleed.  Once I had only one gauze in my mouth, I was able to "eat around it", so that is a relief!

I've still been fighting a pseudomonous and staph infection, so that has been making the left side of my jawline itchy and uncomfortable.  Dr. Boynton advised me to stay on the oral Bactrim, but I feel it isn't helping.  At this point, I'm just happy to not be actively bleeding. 

Originally, we had hoped to take Hanz and Bella to Petsmart for their outing, but I just wasn't up for it w/the bleeds I've been having.  I hope to have a decent day tomorrow - Mom will pick me up so I won't spend the day alone in case of a bleed.  Mark has to work, but I have the day off.  He has been cooking up a storm - so awesome!  Made some salmon w/honey breaded topping the other day, along w/some acorn squash and safron rice!  Had some italian cream cake from scratch for dessert!  Right now food is very important to me - when I'm on steroids after an embolization, my appetite really increases!  There are times though that I may be on an IV antibiotic that wipes my appetite away, and I will go the whole day w/nothing to eat but a baked potato or some broccoli w/cheese.

So, if Dr. Boynton's office is open tomorrow, I may call him to order some lab work and get a blood count on me since I've had bleeds all weekend.  I may beg for some other kind of medicine to get rid of this ridiculous infection - the oral antibiotic is just not working and I don't need that distraction and discomfort on top of the bleeds!  I haven't even seen anyone in my family since I've been back!  I haven't felt well enough to go out to see them, although we talk or text several times a day.  I'll probably see both Mom and Celia tomorrow.  Celia will be going w/me on this next trip right around Valentines day!
I'm going to publish this and try and insert photos later.  This blog has a new format that I can't figure out right now on how to insert a photo like I used to!  Take Care!

I told Kelly she looks like one of the actresses on the show Criminal Minds!

See all my wires from the heart monitor?  I was wearing my own jammies!

Dave Labadie and Elizabeth - both excellent and fun!

Jill is my Twilight buddy!  Super sweet and beautiful!

Here's what I look like right after the procedure!

 

 

P.S.  Ok, I figured out how to insert photos - had to listen to a tutorial on the new format for the blog.  Anyway - you know how I always say it takes a "team effort" for me to function - well, Mark's birthday was saved by my sister Celia & husband Greg!  They know I'm not able to plan anything for Mark the way I'm feeling, so Celia surprised us with cooking a goose for dinner!  She also had some german chocolate cake that you'll see Mark cutting with the "saw knife" our friend Dorinda got him!

Oh, let me back up a bit and mention the photo of us on our 20th Anniversary @ the Macaronni Grill!  It was a nice evening, then we came home and took photos for our anniversary album!  It just doesn't feel like we've been married 20 years - where does the time go?

Christmas day we got to spend some time with Mark's brother Jim and his wife Shelley!  Here is Shelley playing the mandolin and singing along with her brother Chris!  They had friends from church and neighbors over, along with good food, so we had a great time!

 

Here's some exciting news - my beautiful sister-in-law Diane is getting married next month!  We are so happy for her!

 

Would you believe I still haven't been able to get those darned infections under control?  My PCP did order an IV antibiotic, but I felt it wasn't working.  He then ordered a different IV antibiotic that I started having an allergic reaction to!  By this time, it was too late to try and get another antibiotic called in, so I've been taking the oral antibiotic Bactrim that the doctor had originally started me on.  I figured that was better than not taking anything!  I have an appt. w/Dr. Boynton in the morning so we can talk about getting me on a different IV antibiotic!  Meanwhile, a nurse from Christus Spohn  Home Health Care had come by my office earlier in the week to access my mediport. Then on Friday, she drew blood from the mediport to be taken to a lab to check whether the IV antibiotic was affecting my kidneys!

 

A few days ago I accidentally scratched a small bump on the left side of my face.  Course blood came out all over the place.  It seemed to take forever to get that stopped - but I see that little bump again.  I have to be sooo careful when I wash my face that I don't scratch that area!  I wash with one of those face wipes that you wet and foam up, then "rinse" with a small clean hand towel.  Unfortunately, the way my lip is messed up right now, I tend to drool and some of that cakes up on my chin. Some of my nerves are damaged, so I can't always feel when I'm bleeding or drooling! I know, sounds gross, but that is the reality of my situation.  I woke up @ 4am thinking I was bleeding, but it was just drool coming out the right side of my mouth.  Ugh!  I'm afraid to brush my teeth because that may cause a bleed.  There's no way around that though - all I can do is hope that the avm has "retreated" to where I won't bleed easily when I brush!  I rinse with some Biotene Oral  too, as I can't open my mouth very wide due to the avm to brush properly. I have "cuts" on the inside of my left cheek from probably biting down when it's swollen - in any case, because of this, I can't rinse w/anything stronger because it stings!

 

I still have people asking, "So, is the doctor in CO really helping you"?  YES!!!  It's very hard for Dr. Yakes to give me a "time line" on how much longer I have treatments because each time he works on a different area and a lot of things depend on how I heal!  As I mentioned earlier,

Dr. Yakes had used 16 cc's of alcohol this past procedure and apparently it started affecting my heart, so he stopped.  There's been time's he's used ALOT of alcohol and I'll develop a wound that takes a while to heal - so my progress depends on many things!  I have coils in there from the time before to help stabalize the area.  Dr. Yakes reminds me how far we've come and how much work he has done on me!  He always comes to talk to me before I'm put under.  He has such a wonderful bedside manner - he makes you feel comfortable and that you are in capable hands!

 

This past week I was working @ my desk and started bleeding spontaneously.  Blood just started coming down my chin.  I grabbed a box of gauze from my desk and headed to the ladies room.  Luckily it only took some rinsing of my mouth and packing it with gauze to get the bleeding under control.  Course I got blood all over my polo shirt, but I had an extra one @ work to change into!  I continued working, but had been taking Benadryl for the itching and burning from the infection - well that made me drowsy and  I was falling asleep.  My supervisor walked by and asked it I was ok.  She saw that I had my mouth packed with gauze and said I could go home if I needed to.  Well, I was planning on sticking it out and staying @ work, so I started eating lunch @ my desk an hour or so later - and I started bleeding again from inside my mouth.  Packed my mouth again and sent my supervisor an e-mail telling her I was leaving for the day. 

 

Luckily, I've had a decent weekend with no active bleeding!!!  That doesn't mean I'm not "anticipating" another bleed and find myself tensed up where I have to concentrate on just relaxing and letting go of that fear!

 

Well, I guess I've tortured you enough with what I go through with this avm.  Still haven't seen The Hobbit.  This whole year I saw one movie - the Breaking Dawn Part 2!  I'd better get to bed.  Last night I fell asleep on the couch a bit, got up @ 2am to go to bed.  Woke up @ 4am and watched a tv show, then woke up again @  6:30 a.m.  Catch up with you soon!

 

Cyndi

 

As always, I welcome any questions and comments and can be reached @:

dulce@grandecom.net or schumancynthia@gmail.com  Thanks so much for all your love, prayer and support!  I miss my friends - just can't function well enough these days to be a good friend or get together w/anyone!

Ok, I'm adding more photos just for fun!

Here I am about to leave for work with my "what if" bag as Mark calls it!  What if I need this, or what if I need that?  It has medical supplies, books, magazines, snacks - anything that will make me more comfortable!

Here's Mom and Vicente laughing about something being said - during Christmas time!

Hanz, Mark and Bella!

My nephew Mark texted this photo to me the other day!  Reminded me of our Hanz!

My Mommy's home, My Mommy's home!  Bella greeting me as I get home from work!

Playing Farkle @ Mom's!

Dr. Yakes and anesthesiologist Dr. Quinn visiting w/me before I go under!

I thought this was cute!