sarah's Heart Valve Journal

thanks for all the very supportive, positive words!
your kindness and uplifting thoughts are appreciated.
i was d/c yesterday-it was my choice-i could stay if i felt i needed to, or go home and f/u w/ the doctor. after a few laps around the hospital floor, i felt i was doing okay, they checked my vitals, i chatted w/ the doctor, and was d/c.
so...i'm home on antibiotics, prednisone, pain meds and still the lopressor....i do feel a bit more energy and my HR as come down a lot (70-80s!).
mitch had posted to share if there's anything to prevent this/cause this...it sure doesn't sound like it. in fact, the interventional radiologist that performed my thoracentesis explained that it is quite common w/ heart surgeries.

my surgeon, however, was very sympathetic, and is on his toes to take care of things. i have another chest x-ray tomorrow morning and will then meet with him again to see what the next step is. there is still fluid around my heart so....we'll see what tomorrow brings!
thanks again for your positive thoughts!
on to the next day!
sarah

Quick update-yesterday morning my hr was higher than usual (130s) and I was feeling short of breath.
I paged the on call cardiologist and headed to the ER.
I had a pleural effusion, as well as fluid around my heart. My white blood count was elevated. So, I had a thoracentesis to drain the fluid (NOT my favorite procedure), and am on antibiotics in case I have pneumonia.
For now I am admitted on the cardiac floor, taking things one step at a time. I already notice how much easier breathing is -yay!
Thanks for the supportive words HVJ friends! You're so kind!

I haven't updated in awhile!
Looking back at my last post-I didn't fend off sneezes much longer. Yowza.
At 8 wks I've returned to work and started cardiac rehab. In retrospect, maybe not the best plan, that was 2 major things to do at once. I've been active at home on the treadmill, bike and even snowshoeing a few times so I thought I'd be prepared. WRONG. I am so wiped out. And discouraged! My heart rate is still pretty high, 100-115 resting, 130ish at rehab...on lopressor...so rehab is calling to consult with my cardiologist.
It has been SO helpful to use HVJ and read other people's experience with elevated hr...thanks!
So...I am trying to rest, re-evaluating my own expectations and trying to stay hopeful. Ultimately, this recovery is much better than the alternative :)
Thanks again for the kind words...

4 weeks out!
before surgery i was obsessively preparing.
post-op, all i can do is compare. it is very difficult not to think about myself before surgery, what others are doing or did at 4 weeks post-op. even though i KNOW everyone is different, it is very difficult not to compare and try to measure myself against others' progress.
last week and the beginning of this week i was doing (in my mind) "great". i was off pain meds, i was feeling awesome on the treadmill, i was doing dishes and starting to cook again (something i love!), i started doing organization projects around the house, i didn't need any assistance in the shower, didn't need the shower chair at all anymore, i heard from my old pals from Grand Rapids and was renewed and uplifed by all of their comments! i was moving along!

then...things slowed down. i had been having back pain a bit (i mentioned before in a post), i thought because of the awkward positioning with sleeping. by wednesday night i could hardly move and breathe at the same time. i started to get scared. when i took a breath it really hurt. my biggest fear was pneumonia. oh boy. i surrendered (after a pep talk from my best friend and personal child life specialist, amy) and called dr. baldwin's office. he wanted me to come down to have a chest x-ray and to have a look at me, just to be sure everything was okay.
everything was fine! besides my pride. i was quite embarassed for calling there. he was very nice about it, and reminded me that things were going to hurt. just because i was sailing through so smoothly at first didn't mean i wouldn't hit a few rough patches. it was also nice to know how careful he is and wanted to double check that everything was a-ok.
so...i'm back to taking pain meds when i need them. and resting a bit more. i posted some 4 week photos. my scar is healing nicely!
i've also become a pro (knock on wood) at fending off sneezes. i'm so afraid of sneezing! i wanted to try to not sneeze for at least 4 weeks...so i'm glad i made that goal...we'll see how long i can go until the "first sneeze"...which i've read and been told is horrible. i also read (on this blog) to open my mouth to keep the sneeze away, and it works! i also plug my nose, then blow my nose. whew!
another exciting thing with week 4 is that i am OFF coumadin. hooooooray! i feel so bad for those of you who have to take this forever. i cannot wait to enjoy leafy greens again! i sure have missed that!
thanks again for everyone's continued kind words and confidence. especially my GR pals-it's been great to hear from you all :)
on to week 5!

4wks-doing dishes

4wks-15min walk

it is over 2 weeks since my surgery and 12 days since i've been home.
i am learning the hard way what "recovery" really means. recovery is humbling.
i am struggling with the best way to sleep. i've spoke with and read other people's suggestions-i've got it mastered with the wedge pillow, with several pillows on top of that, with a pillow under each arm, which offers great support and relief on my chest. still, my back is quite sore.
the excitement of my week is the trip out to have my coumadin level checked. my dosage is still going up, and i've been having labs about every 2/3 days. this trip out usually affords me the opportunity to stop at the mall or target on the way home for a nice walk on flat, dry, level ground to get a nice "heart rate booster". for days i don't "get out" i get on the treadmill for 15 minutes, encouraged by the physical therapist, before i start cardiac rehab.
the walking feels great!
it is quite frustrating not being able to do the things i am used to doing-normal things (tidy up, pour my own glass of water, put dishes away)...but all in due time. it is harder than you'd think to be "pampered".
i look with excitement to the new year. what an exciting year 2011 was...2012 is sure to bring many more good things...more lessons in patience, humility and without a doubt, good health :)

it is so amazing to think a week ago i was just beginning my recovery.
for those of you prepping for surgery-it is true-things really fly by!
the last week has been filled with a lot. lessons in humility, patience, grace, thankfulness, frustration! and more thankfulness.
i am so thankful for the skillful hands of my surgical team and icu and cardiac team. wow-what great cheerleaders and caregivers. i'm also thankful for my wonderful support team-including the blog.
i'm also thankful for others' patience while i stumble through frustration of not being able to do things as quickly as normal, or things i'd normally do (my "ocd" ways, as nick kindly puts it).
i am thankful with my recovery in that i am doing more than i hoped to do-brush my own hair, get myself dressed, walk around well and not be too sore!
so-1 week. here we are. thank you to everyone, especially my strong new valve :)

home!
the discharge process went much faster than anticipated, yay! one big change will be the next month on coumadin...but that month will fly by I'm sure.
I'm so grateful for everyone, especially my mom and nick for their amazing help during my transition. lifesavers!
for those prepping: a few more pieces of advice: there is a great cotton robe at old navy, I think it's even on sale for about $25...it was perfectly thin (I was hot all the time, between the pain and the meds) and covers everything nicely and is super soft. It also helped to have my own, cute slippers....something motivating, "me", and for staff to comment on. They weren't my #1 fave, because after getting "germy" I just threw them away.
also helpful...nick and my mom thought of me getting a heart rate monitor to prepare me for rehabilitate and get "in shape" again. Very helpful!
that's all I can think of for now...
I have to make some f/u appointments this week and have a lab draw to watch the coumadin...then, Christmas!
thanks again for everything! :)

Sarah is moving up in the world... she left ICU and was moved to the 7th cardiac floor for her last night in the hospital.

She keeps looking better and better each time I visit with her! They are still planning to discharge her tomorrow at some point.

While I was visiting we went for a walk around the entire 7th floor. We brought the wheelchair just in case she needed it, but she toughed it out and made it the entire way.

I am so proud of her progress. Even from yesterday when I visited she has made huge strides. Keep up the good work Sarah!

More good news on Sarah's recovery progress...

This morning they removed her chest tubes, which was a huge relief for her! Later this afternoon they also removed her central line.

Each time I see her she looks better and better. I'm honestly shocked every time I walk into her room. She's incredible!!

She was able to go for two separate walks today and each time she walks a little bit farther. Tomorrow she will move out of the ICU and it is looking like she will be discharged on Sunday!

Again, she wants to thank everyone for the messages and support. I think it might take Nick two trips to be able to bring all of the cards, balloons and gift bags home from in her room!

I went to visit Sarah today and to my surprise I found her sitting up in a chair! The nurses and doctors are absolutely impressed with how well she is recovering. She even was up and went for a walk earlier today. It won't be long before she's running laps around the ICU :)

She's been working on her spirometer excerices today and met her goal of reaching 1500ml's. Pretty darn impressive...

She asked me to thank everyone for the kind words and support. Her room is full of cards, balloons, goodies and even a mini Christmas tree from her doctor!

I posted a picture of her at "24 hours" so make sure you check it out!

24 hours!

One last update for the evening...

Sarah is doing AMAZING. She looks great and is now breathing on her own. GO SARAH! She is still pretty sleepy and not fully alert, but is responding to Nick & Julie's voices which is exactly what we could hope for at this point.

We've received an overwhelming amount of calls, texts and emails asking for updates and passing along support for Sarah. She is large part of so many of our lives and I think we'll all sleep a little better knowing she is on the mend. The difficult part is over for us, her loved ones... the worrying and anxiety can now subside. However, the struggle is just beginning now for Sarah. She has a long, difficult recovery ahead of her in the next few weeks, so please keep the support coming. She's going to need every ounce of it!

1:00pm Dr Baldwin came to speak with us. He said the surgery went very well and Sarah is in stable condition. She is already in the ICU and we should be able to visit her within 45 minutes. The best news of all was that he was able to repair the valve and did not have to do a replacement!

Dr Baldwin said that he is hoping that she will be off of the ventilator and breathing on her own this afternoon.

I will update more after we visit her this afternoon!

11:30 Amber came to inform us that Sarah is "off pump" and Dr Baldwin is observing her now before they close. We are hoping to speak to the doctor within 45-60 minutes. We still do not know any details as to whether or not it was a repair or replacement.

We're all finally breathing a sigh of relief and relaxing a little bit... as soon as we hear from Dr. Baldwin I will update with more specific details.

9:30am The nurse came to update us that Sarah is in the rewarming stage. Things progressed a lot faster then we had anticipated! Amber, her nurse, said most likely it will be another 45 minutes until she is off of the pump.

This is Chelsea, writing on Sarah's behalf while she's in surgery...

Several of us met with her this morning before she went into surgery and she was in very good spirits. She had a positive outlook and waved "Aloha" as she was wheeled into surgery.

We just received our first update at 8:50am that they have started and she is "on pump". The nurse expected to hopefully have another update for us within an hour.

Please keep the prayers and good vibes coming! I'll keep everyone updates as things progress. Sarah also requested pictures of what we're doing while waiting so stay tuned :)

shortly i'll leave for the hospital.
thanks for so many for the encouraging words on the blog and in cards, on the phone and in person.
i wanted to clarify something for those of you who are prepping for your own surgery.
when i said "surgical site infection"...something you may have to do, too-i was given a special soap to scrub w/ last nite, this morning at home and again this morning at the hospital, all in the shower. they also made it clear about using a clean towel every time, etc. so...that may be something you fellow "valve-preppers" may have to look forward to-being squeaky clean :)
thanks again for the positive thoughts! i posted the photo of myself on here of me in hawaii (on vacation) because that is my "happy place" and i will definitely be in hawaii this morning, feeling the sturdy rocks beneath my feet, the cool waters, and the warm sand! aloha for now.

today was filled with the final prep.
i had a few hours of testing (labs, chest x-ray, ekg) and teaching (meet with icu, rt, anesthesia and the admitting nurse staff) to prepare for tomorrow-surgery day.
i'm filled with confidence at the proficient staff. i'm also filled with a comforting feeling...because i work with so many of these peopel daily.
things definitely hit home when it came time to sign my surgical permit...an act i see so many times...it sure is different when it's personal.
i was also very impressed with all the actions in place to prevent surgical site infection. and to make me feel comfortable. i really, really am in good hands.
i will be the first case tomorrow, arriving at the hospital at 5:15a, and going in to the OR around 7:30a. Chelsea will be updating the site tomorrow...stay tuned. thank you all for uplifting me in your thoughts and prayers. i feel it, and i am so blessed.
now...onto positive thoughts and a good night's rest...for all you other "valvers"...have you experienced odd dreams before surgery? i've had so many funny dreams! one of the most pleasant was tanning on a beach with my family...some a little more odd...hardly any to do with surgery? maybe just the product of a busy mind?

after haircut, with 2 pans of fudge :)

before haircut...so long! (literally)

Again...today was filled with more preparations. In reading about other's recoveries and thinking about how to make my recovery easiest and the most comfortable, I thought I should cut my hair. Thinking about nurses or friends and family having to wash and comb through my long hair didn't seem fair. So, thanks to my wonderful stylist Marla, I was able to get a cute cut and then donate my hair to a cause where somone else facing a medical issue will be able to use it. I'll post photos of the transformation. This should make things much easier during recovery.
I also made 2 batches of fudge...so I'll be ready for Christmas gatherings, even if I'm not feeling 100% when the time rolls around.
I've read about folks getting things ready, like having things w/in reach...so I'm starting to think about how to have things ready at home...I'd welcome any suggestions :)

Now, time to wind down and get a good night's rest!

Well...here it is. Less than ONE week.
I have to admit, I am blessed...unlike a lot of others, I haven't had a lot of time to ponder having my surgery. Since my initial testing things have really cruised along. It's really only been 3 months since testing and less than a month since I knew I was having surgery. So the thought of "less than a week" is not too daunting. Or is it?
Yesterday was very productive.
I met with the hematologist. Since I have a clotting disorder, the cardiovascular surgeon wanted to be sure we are taking any and all precautions post-op to keep me safe. The hematologist assured me the precautions already in place at the hospital are what he'd recommend, so I have nothing to worry about. Yay!
Work was filled with a lot of meetings. Meetings to share information with folks who will be helping with some of my duties when I am away. What an amazing group of people I work with! They are so helpful and kind. It makes me feel confident in leaving all my notes with them.
When I got home yesterday evenining, I had a packet waiting for me, "my heart surgery" packet. It explained that on the day before surgery next week I'll come to the hospital and have 4-6 hours of testing (chest x-ray, labs) and teaching (videos, meet my care team) to prepare me for my surgery. This was reassuring. I spent most of the night reading all the books included in the packet. How handy!
I'm so grateful, also, for this blog and Adam's book! It's so helpful to read about my biggest fears...do most women wear bras? Will I remember the vent? What should I pack in my hospital bag? All this and MORE has been covered for me...THANK YOU, Adam, for creating this!
I also thank my cousin, Chelsea, because she has planned our family cookie baking Saturday, which is helping me focus on that (not surgery). One thing at a time. I am concentrating on what shape spritz cookies to bake and what flavor fudge. Only after that will I tackle valve surgery :) I plan to have my little buddy Aiden sleep over Saturday, too...one last play session with my favorite 3 year old before surgery! That's all for now. On to more preparing...

'saint' Nick getting his tree ready

hanging my HEART ornament :)

my dad defined "positive outlook"

this is one of my favorite days-ever

3 amigos all with a BIG year

More preparations!
Today I began the paperwork for my leave and short-term disability for while I'm off of work. I've also started "lists" to help the transition for my co-workers while I'm away. It doesn't feel real that I'll be gone.
I also recieved my appointment time for the hematology appointment. I have to see a hematologist before surgery, due to a clotting disorder I have. I'm glad Dr. Baldwin, my heart surgeon, is so thorough and wanted to be sure everything was in order before surgery. I'll meet with the hematologist on Wednesday morning to discuss any precautions and safety measures. I'll be going to the same office my dad had his treatments in for 7 years. Once again, I feel blessed, comfortable and confident, since this office treated my dad so kindly all that time.
Thanks again for everyone's support!