#TBT: Pink Ribbon 5K Recap

I apologize for the lack of any race recaps lately. I've run 4 races since May and desperately need to catch up, so I thought it would be a great idea to post some of them as a "Throwback Thursday" type post. Sadly, I've had this post typed out for over a month, and simply forgot to publish it. I know I focus mainly on my running and congenital heart condition, but I am considering expanding more on my daily life, and maybe give you a sense of why I've slacked off on posting lately.

Sunday, May 8th, I ran the Pink Ribbon 5K with my mom at Genesee Valley Park. It was also Mother's day so it was nice to be able to spend the entire day with my mom. This race is held every year on Mother's Day and the funds raised go to the Breast Cancer Coalition of Rochester (BCCR). The event offers a 5K run and a walk to raise awareness for Breast Cancer. The 5K run is a women's only event (of any age, so children may also run), and the walk welcomes both men and women. I had run to pick up our race packets the day before the race so we wouldn't have to rush the morning of the race to get down to the park and pick everything up.

(I really liked the bibs and shirts!)

The race was set to start at 9 am. Mom and I still left my house pretty early because I wasn't sure if the parking lots by Strong would actually be open for participants to park in. They always had been for the Stroll, but that was also an event for the Medical Center, so it made sense. I told mom if the lots weren't open, we would park where I park for work and walk over. Thankfully, the lots were open, so we parked and just hung out in the car for a little while. It was a beautiful sunny day, but there was definitely a chill in the air.

Once it got closer to 9, we walked over to park and down to the start. We stood in the sun for a few minutes and of course, snapped a pre-race picture.

They made an announcement (which I unfortunately could not hear) and then they sent us off. The course itself was the same as the Stroll for Strong 5K, so mom and I used it as a "test run" for the Stroll coming up in June.

The course has you run down Moore road, down to Hawthorn drive where you loop around through the parking lot and around the kickball fields onto Red Creek Path where we run back onto Hawthorne Drive across the expressway and back onto Moore Road. On Moore road, the course takes you down towards Elmwood Ave, but has you turn right up towards strong onto Intercampus Drive. Once on Intercampus drive, we ran back towards the canal where the parking lot/sidewalk meets up with the canal path. Runners turn right onto the canal path where they stay until they cross the finish line back in Genesee Valley Park.

(Course map)

Mom and I stayed together for most of the race, then when there was about 400 meters left, I took off towards to finish. I believe I finished the race in 39:25. My goal was the finish in under 40 minutes, so I was happy. Mom finished just a minute or so behind me.

Mom and I grabbed a water and walked back towards to pavilion. There wasn't much else going on in the park, so we decided to head out. We went to grab a breakfast sandwich to refuel before heading home to get cleaned up to spend the rest of Mother's day with my grandparents.

QOTD: This is the first time I've run this race. It sounds like a great Mother's Day tradition. Do you have any Mother's Day traditions?

One Year Post-Op, So Was It All Worth It?

I know I'm actually 13 months post-op at this point, so I apologize for not posting this sooner, however, I have a good reason. Thursday, April 14th I had my one year follow-up with my Cardiologist, and let's just say things didn't exactly go as I anticipated at my appointment. I was actually waiting to post this until I had heard from my Cardiologist (I'll get into that later), which I finally did, last Tuesday.

So let's rewind back to March, about three weeks before Easter. I was at my Grandparents for the weekend with my family, and it seemed like all of a sudden, out of nowhere I was going in Bigeminy.  Bigeminy is when you have one normal heart beat and then an abnormal heart beat and the cycle repeats itself until it breaks, or you're able to break it with various maneuvers.

The runs of Bigeminy were consistent throughout the weekend. Though manageable, they didn't make me light headed or dizzy, so I wasn't overly concerned. The cycles of bigeminy eased up a bit, but my Cardiologist still wanted me to have an Event monitor. It's a long (irritating) story that I don't need to get into, but I was not able to get my Event monitor. Thankfully (or not, depending on how you look at it), my coworker had palpitations at one point during her pregnancy, and one of the Cardiologists we work with had bought her a Kardia (by Alive Cor) handheld EKG monitor.

(Alive Cor monitor and Kardia App)

The pocket EKG (as we'll call it), allows you to attach the finger plates to the back of your smartphone (I didn't since it's my friends). Once you download the free Kardia app onto your smartphone, you're able to record 30 second rhythm strips, and save them to your phone within the app. My coworker asked me if I'd like to borrow it, and I jumped on the opportunity. Since my runs of bigeminy had eased up, I really didn't have anything to record, but I set it up anyhow.

Let's just say, boy, was I thankful that I did! About a week before I was set to see my Cardiologist (Saturday, April 9th to be exact), the runs of Bigeminy came back with vengeance! That day I had given a lecture of interesting Echo cases at a sonographer symposium, and everything was fine. That evening I was relaxing with my friends at one of my favorite restaurants in State College when they started back up again. The runs would come and go throughout our entire dinner. I didn't eat much, and I just kept taking deep breaths to try and break myself from them. I  was tired, and wondered if that could be the cause. I also didn't have the Alive Cor with me, so I couldn't record any of the tracings. 

The next day after I returned home, I threw myself on my couch to try and relax, but the runs of bigeminy kept coming, so I grabbed the pocket EKG, and decided to give it a try. It worked! That evening/night and into the next day I recorded 33 rhythm strips to show my Cardiologist. Unfortunately, due to the arrhythmia, I didn't get much sleep (which was extremely frustrating considering how tired I was).

(Sample of my Bigeminy from the app)

Thursday rolled around and I headed to my doctors appointment. I had been looking forward to this appointment because my doctor anticipated that I would "graduate" to one year follow-ups after this visit. Once my cardiologist came in, he asked me how things were going, and we discussed my palpitations. I showed him the rhythm strips on my phone. As he scrolled through them, he commented that as a group, the physicians had discussed buying the Alive Cor monitors for the department. He was impressed with the quality of the rhythm strips on my phone and seeing how it worked. We discussed the possibility of putting me on a Beta Blocker to try and get me some relief from the palpitations, but first he wanted me to get an echo to see how things were going since I was there in October.

If you remember correctly, before I went to my 6 month follow-up, I found out my valve was already leaking. During the echo, Cathy and I chatted, and I watched as she did my study. The regurgitation didn't appear to be any worse, so that was reassuring. She finished my study, and then went to make sure she had all the images she needed. She came back in and took few extra pictures, but I didn't think anything of it. 

After the echo, we met my Cardiologist back in an office visit room to discuss the results of the echo. My Cardiologist asked me what I thought of my echo, and I mentioned I didn't think the regurgitation was any worse than it was in October. What he said next, I was not expecting. He said the valve leaflets were already thickened and narrowing which was something he didn't anticipate as the valve was, at this point, just under a year old. He also said the gradients across the valve had increased since the last echo (makes sense since it was narrowed). He said he wanted to take my echo to one of the surgical conferences just to discuss the case and see if any of the other physicians had seen this before.

That being said, we also discussed options should the valve continue to progress in this direction. At the time of my appointment he didn't feel it was necessary to act on anything just yet, and he said once he spoke to the other physicians and surgeons that he would call me to discuss further. Then we revisited the bigeminy that I was having. I told him I felt comfortable trying out a low dose Beta Blocker to see if it gave me relief of the symptoms. He agreed, and told me to start off with one pill a day, and if I didn't feel any relief of my symptoms within a few weeks, to increase my dose to two a day. Easy enough. Then he told me he wanted to see me back in 3 months, since the valve was progressing in the manner that it is, he wants to keep a close watch on it. So much for thinking I was going to "graduate" to one year follow-ups. I left my appointment feeling discouraged, but there was nothing I could do about it.

A few weeks went by and my Cardiologist called me to tell me he hadn't had the opportunity to present my echo yet, due to the high volume of cases that needed to be reviewed. He reassured me he hadn't forgotten and that he would call me as soon as he had the opportunity to discuss the case. He asked me how my runs of Bigeminy were going, and I told him they had improved, but not resolved entirely, and that I was considering upping the dosage to two a day. He agreed and thought that would take care of the few I was still having. He also told me that the Beta-Blocker and dosage he prescribed was so small and specific that it should not give me any adverse side effects.

Finally last Tuesday, my Cardiologist called me to discuss everything. He told me the other cardiologists and surgeons agreed that the valve was progressing at a faster rate than expected. He said a few others had seen this, however, it was rare. At this point he does not want to be aggressive, and he doesn't believe we need to be. He said that, if down the road, we need to take action, he said many people do well with an Angioplasty type procedure in the Cath lab, where a balloon pops open the leaflets and allows them more mobility without increasing the degree of regurgitation. At this point he still wants to follow me closely, just to see if things stay the same or continue to progress. With that said, he did want to get a closer look at things, so he said he was going to set me up for a Cardiac MRI, and told me his secretary would call within the next few days to set it up. He said I could do it at anytime, but wanted it before my appointment in July.

(Example Cardiac MRI)

He then asked me how my Bigeminy was, and I told him that increasing the dosage had improved them, and that I only feel them on a rare occasion, and he was happy to hear that. He asked me if I was having any other symptoms other than the bigeminy, and I said no, not that I had been aware of at least.

The next day the Children's Heart Center called me to set up my Cardiac MRI. The woman I spoke to then told me that she was looking at September. A little stunned, I told her my Cardiologist wanted it before my appointment in July. She then said, "well he told me to get you scheduled for our first available." She then explained to me that the MRIs are done by someone who comes from Syracuse, and he only comes to town one Thursday a month. So, I'll just have to wait and have him give me those results over the phone when the time comes. I've never had a Cardiac MRI before (that I'm aware of), so this should be interesting.

Overall, I'm feeling slightly discouraged, but in the end, I would have needed a valve eventually. My Cardiologist reassured me that I'm still doing well. He didn't place me on any restrictions, as long as I'm not having any symptoms, in which case, he'd want to see me back in his office sooner than July. We'll just have to wait and see if there are any changes on my echo then, as I patiently await my Cardiac MRI. On a more positive note: Someone is always having a worse day than me, and I'm reminded of that daily at work. At least I'm still on this side of the dirt. ; )

I'M ONE YEAR POST-OP!! {Wegmans Family 5K Race Recap}

They say it takes an entire year to recover from any major surgery, and believe it or not, I made it! I can barely believe it myself, but I am in fact 1 year post-op from my open heart surgery! In some ways it seems like it was just yesterday, and in others it seems like it's been longer than a year. I also had my 1 year follow-up with my cardiologist, but that is another post for another day. So how exactly did I celebrate this milestone? With a 5K and brunch with friends!

This past Sunday (April 24th), I ran the Wegmans Family 5K, which is one of 4 events offered during the Flower City Challenge weekend. April 24th was actually the exact date of my 1 year "post-op-iversary," so it was important to me that I do something to commemorate the milestone. I'll be honest, I'd been planning on this 5K for the entire year. I knew that the race would fall on this weekend, and particular day. Luckily, I didn't have to do it alone either. A few of my friends from my previous job also joined me in celebrating.

Sunday morning I woke up (earlier than I normally do even for work), and got ready to meet my friends at Blue Cross. The race was set to start at 7:45 AM (with a half marathon set to start at 7:30 AM). I got down there and parked around 7:00 AM, and I went inside to use the restroom and see if I could find any of my friends. As I made my way around the arena, I heard a "Stacey?" I turned to see one of my Instagram friends, Cheryl! We had just been chatting the night before that we would finally be at the same race (after about 2 years of following each other), though she was running the half. We gave each other a big hug, and chatted for a few moments before wishing each other good luck.

I then heard from my friend Natalie that they were inside getting our friend Linda's bib, so I went down to packet pickup to meet them. I made it down there, and I noticed that both Natalie and Linda were wearing their #TeamStacey shirts that work had made for everyone for the Heart Walk the previous year (due to the walk being the same weekend as my surgery). As soon as I saw them, I broke down into tears. Happy tears, however, I was overwhelmed with everything that had transpired over the past year. It is easily described as peaks and valleys, again though, everything happens for a reason.

I pulled myself together, and we went outside to wait for the race to start. We had missed the half marathon start due to being inside at registration. They wanted to make sure the half marathoners had their bibs first since the half started 15 minutes before the 5K.

(Pre race selfie)

(Natalie, me and Linda)

We walked back towards where everyone was congregating in the race corral, and it wasn't long before the 5K race started. I didn't have a set goal in mind for the race, and I had mentioned that to Linda and Natalie. I just wanted to come out, celebrate and have fun with my friends. Natalie's only goal was the beat our time from the previous week.

(Course Map: Source)

This is the second time I've run this race (since last year my plans were derailed by surgery), and I LOVE the course. It's pretty flat, and it goes by some great landmarks in the city including the Susan B. Anthony House and Frontier Field.

Natalie, Linda and I chatted the entire race, and took frequent walk breaks. I mentioned to Natalie that I wish I had my timer because I honestly think we'd be able to run faster if we had scheduled walk breaks, but my timer is broken. While we were running along, the Rochester Police Academy and Rochester Fire Academy ran by us with their current recruits running in sync. Before I knew it, we were past Frontier Field and coming up on the 2 mile sign. I checked our time and saw that we were in good shape to beat our time from the previous week! The last mile flew by, and we even came across some cameras!

(Of course, some of them I did't even see)

(Two thumbs up!)

Before I knew it we were rounding the corner by Dinosaur BBQ, and I decided to kick it in and finish strong. We all finished within a minute of each other. As soon as I crossed the finish line, I started to tear up. Sounds silly, but I was overcome with emotion knowing how different my life was just one year ago. Linda gave me a high five and a huge hug, which probably made me cry harder, but it was all good. I waited for Natalie to cross the finish line, and gave her a high five. She had achieved her goal of beating her time from the weekend before! I also mentioned to her that we had even stopped for a few pictures along the course, so if it weren't for that, our time would have been a few minutes faster!

We walked down to the end of the finish chute for a cup of water and decided to head inside for a small bite to eat to hold us over before our brunch. While we were inside, there was a fleet feet backdrop that we decided to snap a picture in front of.

(All smiles after a fun 5K!)

After we grabbed some fruit and water, we decided to venture back outside to watch some of the half marathoners coming back in from the race. Our friend Courtney was running the half, so we definitely wanted to be out there to see her finish. It was fun watching all the half marathoners come in and finish their race. Courtney had told us that she'd probably finish in around 2:00:00, and she wasn't far off from her estimate. In the distance we saw her coming, so we all started cheering for her. Natalie snapped a cool "Happy Potter" picture (as I call them) on her iPhone.

(Court coming in strong - ignore my arm, gave her a high five)

Once Court finished, Natalie, Linda and I hung out in the sun a little bit before we headed to find Courtney to see what she wanted to do for food.

(Smiles in the sun)

We decided to head over to Village Bakery for brunch since the other place we were planning on going was actually closed. Courtney had run by it on her run and noticed it was no longer open. Oh well, I will never complain with Village Bakery. Their open face egg sandwiches are the best! We all enjoyed a delicious sandwich and (again) chatted for a while before we all went our separate ways.

(Linda, me, Natalie and Court at brunch)

In a silly way, this race will always hold a special place in my heart just due to the circumstances in which the race surrounds for me personally. Like I said, it's a pretty flat course, and in the years that I've actually been able to participate the weather has been fantastic. The cost of the race is reasonable too. It would have been even cheaper for me if I had registered when the race actually opened, but I still think I only paid something like $27.00. The only downfall to this race is the time. The half started at 7:30 AM with the 5K to follow at 7:45 AM. I know they started this race early due to the fact that there was also a half marathon being held during the same time, so that make sense. It's not a deal breaker since it didn't deter me from running the race.

QOTD: Are there any races that hold a special place in your heart?

Color Run Recap

As of yesterday, I am officially 6 weeks post op, and starting to feel more and more like myself each day. I'll get to that in a bit, but first I want to recap the color run that I wasn't even going to participate in. So as you my have already read, I was back at my house for Memorial Day weekend. My parents went to Canada, and so they dropped me off at my house. I still was unable to drive, so my friend, Melissa, so kindly picked me up to take me to the color run so I could see all my coworkers.

I had registered for the color run earlier in the year thinking that my surgery was going to be sooner than it was, so I honestly wasn't planning on running it anymore. The morning of the color run was sunny, but very cool, so I threw on a pair of my running tights, a long sleeve tee and a jacket to ensure that I would be warm enough watching my friends from the sidelines. Melissa, Sam and their friend picked me up around 7:30 and we were headed to the run. There was so much traffic, but that provided a lot of time for us to catch up. Once we finally got there and got parked, we met up with some of our friends. My friend Angie was already at the race, but no one could get ahold of her, so I was hoping we'd run into her at some point during the after party.

(Melissa and me before the run!)

I still wasn't planning on running, but Melissa asked me to run with her. Luckily, the week prior at my 3 week follow-up appointment my doctor said I could start working on my cardiovascular endurance. As you know I had been going for walks with my mom. So I agreed to do the run with Melissa, and we decided that we would do intervals. We joined the sea of people in the start corral at the race and slowly made our way to the front, and then we were off.

(The group before the race)

We started off slow and to the side of the course so the faster runners could get past us. This was my first time running since my surgery, so I was not out to break any records, and to be honest, I was worried how it was going to go. Before I knew it we were rounding the corner and running into the first color station. I was feeling great so far which was exciting considering surgery was a month prior, and I could remember a time when just walking around my house would increase my heart rate to >110 BPM.

We took our time doing run and walk intervals as we both needed them, and it was a lot of fun! It gave Melissa and I plenty of time to catch up, and I could hear about what was new at work. We rounded a corner, and started heading up a hill to a point where the race doubled back and we passed runners who were on their way back towards the finish. As luck would have it, I was watching the runners coming down the hill on the other side of the road and I saw Angie! I shrieked, "ANGIE!" She stopped in her tracks and I gave her a hug. I know I surprised her, I could tell by the look on her face. Melissa and I continued on, as I looked back and saw Angie giving me a look... A look of confusion. I would explain to her later, but I was so excited to literally "run into her". 

Melissa and I made our way through the course getting splashed with color, and it started to warm up. I had to admit, I was feeling great, and it really surprised me! It also seems like every year they change the course a little for the color run, which keeps it exciting. We were about a quarter mile from the finish, and a guy passed us holding a condiment bottle with orange corn starch in it. He looked us and said, "Oh hey, girls!" And then sprayed us with more orange color! Haha! We finally made it to the finish where they were throwing glitter on all the finishers. We made our way through the finishing chute, received our medals and each a bag of glitter and color to throw at the after party. Then weaved our way to the water table. It wasn't long before our friends finished, and we celebrated together by throwing our packets of color. 

Shortly thereafter, Angie did track me down and I was able to catch up with her, and explain why she saw me on the course.

We hung around the finishers party for about an hour before we decided to head out. By this time it was beautiful out, clear blue without a cloud in the sky!

6 Weeks Post Op:

It's hard to believe it's been 6 weeks since my surgery, the time has really flown by! Like I said, I'm feeling a little more like myself with each day. I still have some pain, but it's better than it was when I reported 2 weeks ago. The majority of the pain I have is on my right side in my pectorals. It's still a little painful to lay on my right side in bed, but I can for awhile. My incision is looking even better, and I think the Mederma may be helping. I've also been using the Mederma on the spot where they had an arterial line in my arm, and it's helped to reduce the appearance of where the sutures held the line in.

In other great news, I am also back at my home! I was given the go ahead to start driving again last Thursday! I'm not allowed to take long trips, but this works for me. As long as I can drive around town to do the things I need to do, that makes me happy. I'm slowly getting my independence back. I still have a few questions for my doctor which I will email in about this coming week. For now, I'm feeling pretty good, and happy things are progressing.

QOTD: Have you run a Color Run with friends? Do you have a favorite race you like to run with a group of friends?

Celebrate Miniature Milestones & Memorial Day Weekend

Sunday (5/24/15) marked one month since my surgery! It's amazing how quickly time has gone, and what has changed since my surgery. I last left off filling you in on my 3 week follow-up with my Cardiologist, which, if you read, went really well! If not, he said I could work my way back up to running, and start with some light yoga. I have yet to do any yoga, but last week I did sign up for a "New To Yoga" class at a yoga center, and that won't start until July. Mom and I have also been going for some brisk walks since I was "released" to increased my aerobic activity. As always, it feels great to get out and move in the fresh air.

This past weekend, my parents went to Canada for the long weekend, and so they dropped me off at my house. Words cannot describe how great it felt to be back in my home for 3 days! We drove to my house on Friday, and my parents left from there on Saturday morning. Since I am still unable to drive, I talked to my friend Melissa earlier in the week, and she said she would pick me up at take me to the Color Run, so I could see all my coworkers, and celebrate with them at the finish line as they came running through in a rainbow of color. I got up that morning, and put on some of my favorite running/yoga tights, a long sleeve shirt, and a light jacket. It was cold out that morning, and I knew I would be cold watching all the runners from the sidelines. Well, as it turns out, I decided to run with them!

(Color Run fun!)

I had registered for the run before I knew when my surgery would be, and then when surgery wasn't scheduled until April, I had thought there was no way I could do it. I figured if I took it easy, I would be fine. I'll recap the color run later, but I had a blast! After the color run, Melissa took me back to my house, and I spent the day relaxing. Since I had got up early to be ready for Melissa, I took a nap, and then spent the evening watching television and movies with Coco.

Sunday morning, Nita picked me up at 7 to take me to the Team RWB 21 Guns WOD With Warriors Crossfit event that one of our teammates was hosting at a local Crossfit. At the event the participants had to run 400 meters, do 21 push ups, 21 box jumps, 15 burpees, and 9 pull-ups, and keep cycling through the workout for a total of 21 minutes. Since I am unable to do any weight bearing exercise, I watched as all of my teammates pushed through the challenging workout (I know if I had done it I would have died). I was just so thankful to get out of the confines of my house and see my friends and meet some new people. Even just being able to talk to people was great - after being at home alone for 3 weeks, I'm starting to go a little crazy.

(2015 Team RWB 21 Guns WOD With Warriors. Photo Cred: Andrew Follett)

After 21 Guns, Nita and I went back to my house so I could change my clothes and grab some money, and then we ventured back to her house. She changed and then we went out to breakfast with her husband and their family that were in town. We hung out at her house for a few hours, then headed to the mall for a few hours. On the way back from the mall, we grabbed some Thai food for dinner, then Nita brought me home around 10. Definitely the busiest day I've had since my surgery, but it was A LOT of fun!

Monday morning I got up at my usual time, made my coffee and sat down to watch Live with Kelly and Michael. I've been setting my alarm for 8:45 AM to make sure I get up, and I've also been going to bed between 10:30 and 11 (most nights). Doing this is important to me for two reasons. One, so I wake on time to watch Kelly and Michael, and two, so when I do go back to work, I won't be completely exhausted because I've stuck to a certain schedule. I spent most of Memorial Day lounging around my house, until my parents got back from Canada. I sat out in the sun for a bit to read a Runner's World Magazine, then went inside to binge on Young and Hungry on Netflix.

Now that I've recapped my Memorial Day weekend, let's update on how I'm doing now that I'm one month post-op:

The Good: Celebrating miniature milestones everyday!

Increasing My Aerobic Activity:

As you know, I had been going on brisk walks with my mom. Now you know I ran/walked my first 5K this past weekend. Like I said, I'll get into that with my Color Run recap, but it was very exciting for me! (Celebrate Miniature Milestones)

Yoga:

I have not started doing any yoga yet, and I'll get to that below. As you know from above, I did sign up for a yoga for beginners class. That gives me something to look forward to for when I get back home. It will also help to increased my flexibility, which I'm certain the little bit I had (which wasn't much) I've lost.

Mederma:

I spoke to my surgeon on the phone last week, and he said as long as all the scabs from the incision were gone, I could start using Mederma on the incision to help reduced the appearance. I've never used it before, so we'll see if it really works. The scar this time around is not going to be as prominent as the one I had as a baby, so I'm not too concerned, but I figured why not try.

My Level Of Exhaustion:

This has begun to improve as well! For the first few weeks after my surgery, I would get up, have my coffee and eat breakfast, watch a few shows. Then after I ate lunch, I could barely keep my eyes open, and would need a nap. I no longer need a nap everyday, some days I still take one just because I can. [giggles] After talking to my coworker about it, she said it was completely normal, and to take the naps when I felt I needed them. It's all a part of the healing process, and I needed to listen to my body. She also told me last night, I needed to be knocked down like this because I was always on the go (which is true). I have a lot of energy for someone who is living with congenital heart disease, and going through this surgery and recovery has certainly tested my patience, but it's for the best. I told her to wait until I get back to work, I'm going to be like The Flash, and have all this new found energy! She said she already forewarned my coworkers that I'd be running circles around them, ha ha.

The Not So Good: I don't want to say bad because nothing bad has happened since the suspected Pulmonary Embolism incident a few weeks ago.

Sternal Aches And Pains:

I still have aches and pains in my chest. Honestly, I think my sternum itself has healed, it doesn't feel like pain from that. It's more musculoskeletal in nature. The pain that is currently nagging me the most is hard to describe. It's on my right side, and sometimes extends from my shoulder across my clavicle to the base of neck where the clavicle and sternum meet. Sometimes if I bend over to get something, I feel a sharp pain in my neck almost as if a tendon has snapped across a bone. It's truly the strangest sensation, and very hard to describe other than that. That is why I haven't started any yoga yet.
It's still hard for me to lay on my right side in bed without getting pain in my shoulder and chest (almost along the same area). I'm sure it's all a part of the healing process, but I'll talk to my doctor about this on Thursday when I call. What little chest pain I have is just the muscles still healing and getting settled. The nerves are still irritated as my chest is still sensitive to touch around the incision.

I hope everyone had a wonderful Memorial Day and took at least a moment or two to honor those who paid the ultimate price for our freedom.

QOTD: What did you spend your Memorial Day doing? Were there any parades or festivals in your area?

Three Week Follow-Up; All Good Things, All Good Things

Thursday was my three week follow-up with my cardiologist, and it honestly could not have gone better! Since I have been staying at home with my parents, my mom and I had to drive back to Rochester for the appointment.

(Excited to head back to Rochester for the day)

Once I made it to the Children's Heart Center and checked in, the secretary asked me if I went to get my chest X-ray. Nope. No one made me aware that I needed one prior to my appointment. {sigh} The nurse still brought me back to get ready to see him. She did the usual vitals: height, weight, blood pressure and O2 saturation. Then she had me change into a gown so she could do an EKG. She then brought me across the hall to see the doctor. Almost as soon as I hopped up on the bed, my doctor was knocking at the door. He told me I needed to go get my chest X-ray first before he could see me. Makes sense, but I was annoyed that I wasn't told prior to arriving at my appointment. I changed back into my clothes and left the Children's Heart Center.

Mom and I made our way down to radiology. I checked in and got my wrist band, then we waited in the hallway to get called back. I waited maybe 20 minutes, not too bad. The tech took my first X-ray, and he came back into the room and asked, "There's supposed to be a valve in your heart, right?" "Yes!" I responded. Before I knew it I was headed back up to the Children's Heart Center. Minutes after I was put back into an exam room, my doctor was in there. He listened to my heart and lungs and said it was boring (which is good). He said the cardiac silhouette on my X-ray looked larger than he liked, and wanted to get a quick echo to make sure there wasn't any fluid around the heart. He didn't hear anything on auscultation, but just to be on the safe side. He gave me a gown to change into and I waited a few minutes for the sonographer. I love getting echoes at the Children's Heart Center, they have heated beds in the echo rooms, some of the ceiling tiles are painted, and there are TVs with VCRs so kids can watch movies while they're getting their echoes (The kids get all the cool stuff)! I laid there and talked to the sonographer while she did my echo, she had helped me the day I shadowed in the lab before sitting for my board exam. It was really nice to catch up with her.

After my echo, I met with my cardiologist once more to go over everything and discuss things in detail. There was no fluid around my heart, which I knew from watching my echo. Then I started asking him various questions. I wanted to know what my estimated time frame was until I could start running, lifting, etc. He said I could start running now, but not to overdo it. He said start out with brisk walks, then work my way up to a run/walk, then jog, etc. He also told me I could start doing yoga to regain my flexibility. No weight lifting of any kind until July sometime. I'm sure I won't be playing any tennis this summer either, or at least not until late summer. The best thing he said though was that I would be well on my way to running half marathons this summer! That was great news because Wine & Dine Half Marathon training starts in July. My cardiologist said I'm doing well, and I don't need to come back for 6 months. This would also be the last time I have an office visit with him as he is leaving for a new job. I don't yet know who my new Cardiologist will be, but they'll be hiring someone to take over his patients, and he said they would be an Adult Congenital Specialist. We talked for a while before I checked out.

After I checked out mom drove me over to work so I could see all of my co-workers. They were all happy to see me, and I was just as happy to see them. I am enjoying my time off, but I really miss work (A good sign that I enjoy what I do). I think I got to see just about everyone while I was there, and I ended up staying to visit for a little over an hour. Everyone commented on how great I looked, if only I felt as great as I looked (soon enough). After visiting with them, mom and I left to grab some lunch at Moe's. We stopped off at the mall to do a little shopping, then went back to my house to check the mail and mow the lawn. My mom actually mowed the lawn while I sat out in the sun and read magazines - I still have weight restrictions. My doctor told me to use my common sense when lifting things. If I don't think I can do it, then I probably shouldn't, and so on. Mom and I left my house to head back home around 6:30. It was a very good, but busy day, so by the time I got home, I ate dinner and headed to bed.

Today my mom and I went for my first real walk since my cardiologist told me I could on Thursday. It felt good to get out, move and get some fresh air. We also took Coco, mom walked her since I still can't (again, those weight restrictions).

(With my little bean just before our first real walk in 3 weeks!)

I'm really excited that things are progressing, and that I can start to do more. I have to call my doctor back at the end of the month to let him know how I'm feeling, and then he may lift my driving restriction. We really need to make sure that my sternum is healed before I drive again, If I get into a car accident, the airbag will crush my sternum. Once I get my driving restriction lifted, I can get back to Rochester and all my friends.

Recovery Motivation and Moments of Frustration

Time to switch gears a little. Instead of talking about how my recovery is going, I thought I would talk about some of the things I love that are motivating me to recover, and getting me through my moments of frustration.

runDisney:

runDisney Wine & Dine Half Marathon: This is one of my biggest motivators! If you remember, back in March I took a gamble and registered for the runDisney Wine & Dine half marathon. I had received a letter at the beginning of April stating that my surgery could be rescheduled at any time up to, and including the day of surgery. The thought that I had registered for a half marathon back in March, and receiving this letter a few weeks later made me extremely nervous, especially knowing my surgery could possibly be pushed back. Thankfully, as you probably know, my surgery was moved up, from a Monday to the Friday before. So that definitely worked out for the best!

I made reservations at a Disney Resort for Lily and me a few days after registering for the half marathon, and shortly thereafter received a small booklet about our vacation and with a list of important dates:

As you can see, I was able to start booking dining reservations on Sunday! Somehow I managed to delete the e-mail that had my reservation number to link to my MyDisneyExperience account. So I was on the phone with Disney Sunday morning getting my number to link. Without linking my reservation number, I would have been unable to book dining. Once I got that done, I was on the hunt for the dining reservations that Lily and I talked about.

Unfortunately, Lily and I wanted to dine at Be Our Guest Sunday night, but there were absolutely no reservations available. So I made us one for lunch instead. I guess that's better than not dining there at all, especially since I have not been there yet. Next I wanted to make us a reservation at Il Mulino for early Saturday evening before our race. I figured that would give us adequate time to digest and time to get ready for the race. Once again, there were no reservations available. I was striking out all over. Instead, I made us a reservation at Wolfgang Puck Grand Cafe - the menu offered Italian dishes that didn't seem too over the top before our race.

Since I was unable to get the 2 reservations I really wanted to get for us, I decided to book us a nice dinner for Friday night. I know we planned on some park time on Friday after we get there. I will have an annual pass by then, and if Lily get Park Hoppers, we will be dining at Akershus Royal Banquet Hall with the princesses. I have dined there before with my friend Nita, and it was wonderful, s I'm really looking forward to dining there again. So my dining plans weren't entirely a bust, and this week I'll start looking at flights. I also updated my proof of time for the half, which calculates my estimated finishing time based on the 10K time I submitted. It will also determine my corral placement. I'm starting to get more excited for our trip in November - which is great motivation for my recovery!

Walt Disney World Half Marathon: I also never wrote about this as it was so close to my surgery, but last year I had to defer my Walt Disney World Half Marathon registration to 2016, so I am re-registered for that. I have yet to make reservations for that, but I should probably get on that soon.

Aside from planning for my upcoming Disney Trips, I've been doing a lot of relaxing out in the sun. I can't do much of anything, but I can get a tan, ha ha. It's been unseasonably warm for May, but I'm not complaining one bit. Most weekday mornings I wake up and watch Live with Kelly and Michael, and then I typically venture outside for a bit to read in the sun. I cut some old running crew neck t-shirts, so that my incision is covered but my arms and some of my sides are exposed to the sun so I can get a tan. I have to be extremely careful of my incision until it heals.

(The weather has been unseasonably nice for May in Western NY)

I'm starting to get a base tan which is great! Before surgery, I also bought a lot of magazines (mainly fitness and running magazines) to occupy my time. My coworkers also gave me quite a few to read. I've slowly been making my way through them. The fitness magazines have also served as excellent motivators for my recovery. I've marked pages of articles and workouts I want to try when I'm allowed to workout again.

Yesterday I gathered a few magazines and was all set to sit outside for a bit. Then just as I finished putting my sunblock on, the sun went behind the clouds. Bummer. It was still warm out though, so I did sit outside until my mom came home for lunch. Once she got home, she handed me a package. It was from our friends in Texas. I opened it to find 3 puzzle books and a Women's Running Magazine!

So excited to receive this recovery mail, it gives me a lot to do while I'm sitting out in the nice weather.

So what has me frustrated? To be honest, I only have a few things that frustrate me. The biggest thing is the amount of fatigue I feel. I know this is natural after a major operation, but for someone who is constantly on the go, it's hard for me to be so fatigued. I'll sleep between 8 and 10 hours a night and by 2 pm, I'm in need of a 2 hour nap. Especially if I go to the grocery store or out to lunch with my parents, I need to rest when I get home. I've read that is this to be expected and I should be planning to rest for a few hours in the afternoon, so I'm trying not to let it get me down.

I'm also getting a lot of palpitations (PVC's/PAC's). This is also common as the hearts tissue has been disrupted and in other words is irritated. I notice them more when I'm up and moving rather than when I'm resting. The higher my heart rate gets (which isn't high because I'm not doing much), the more I get. Just everyday tasks get my heart rate up, like taking a shower. Finally, the amount of time it takes me to do things. Clearly, there is not much I can do about this, but it takes me twice as long to do anything. I know this will get better as I recover and am feeling less pain, so for now I have to suck it up and deal with it.

QOTD: Who's signed up for any of the runDisney races over the next year?

All The Cool Kids Are Born With *Some Assembly Required: Part 2

Remember how I said I felt pretty good Sunday night when I went to bed? I woke up Monday morning feeling like I got hit by a Mac truck. The nurses came in to get me out of bed at 6 AM, so I was ready for rounds and I was extremely nauseous. Around 4 AM the nurses had come in to do labs, and give me another dose of my pain killers, so I think the pain killers were finally starting to get to me. I've always had adverse reactions when taking any sort of narcotic. I sat in the chair for while, until I couldn't take it anymore. The nurse practitioner came in and said they hadn't seen my surgeon yet. I asked if they could give me some Zofran for the nausea, and if I could stop taking the narcotic since it was making me nauseous. She was fine with that and started giving me Tylenol instead. Of course the Zofran made me drowsy, and I could barely keep my eyes open sitting in the chair.

The nurse came in to check on me and I asked if I had to stay in the chair. They said yes, until the doctors came to round on me, they did not want me getting back into bed. The thing about that is I was almost positive my surgeon was in surgery, and chances are I would not see him until early afternoon. I text my parents to tell them not to rush to get to the hospital as I was not feeling well. I somehow managed to fall asleep in the chair, and I woke up around 9:30 feeling a little better, so I ate some yogurt and peaches, and drank an orange juice. Shortly after I woke, one of the cardiac sonographers I know stopped in to visit me. She brought me a small bag with some of her favorite snack bars! She and I chatted about running and her son for a few minutes, then she was back to work, it was busy for them especially being a Monday.

My nurse came in around 10, and I took more medication, then she asked if I would like to get a shower. The magic words!! I could not wait to take a shower!! The nurse took the dressing off my incision to take a look at it. It looked good, I was impressed with how clean the sutures were! Then she attached my telemetry to a longer cord so I could shower. This was my first time showering since my surgery on Friday, and of course it took twice as long for me to do anything.

(Feeling like a new girl after my shower!)

By the time I got out of the shower I was feeling much better than I was when I got out of bed at 6 AM. My nurse put a new dressing on my incision, and new telemetry patches on me. Shortly thereafter, my parents came to visit. Right as my family came the Physical Therapist came wanted to work with me. She watched me sit, stand, lay down and get out of bed. Then she walked with me around the nurses station and up and down the stairs. She told the nurse I was free to be independent, and the nurse was not surprised. This was great because now I didn't need to call the nurse to do everything.

I got back to my room and visited with my parents for a bit. They didn't stay long because I was still tired, and they wanted to do some things around town and at my house. Around lunch time two of my coworkers stopped by to visit. They brought me a nice little basket of flowers, and I filled them in on what was going on with me. They also filled me in a little about what was going on at work. They didn't stay long because they had to get back to work. I was still tired, and I had a headache, but my lunch came, so I ate some of that hoping it would make me feel better.

My surgeon came in early that afternoon, and he said it sounded like I could go home on Tuesday. I told him I was feeling horrible, and if I still felt horrible I did not want to go home. He did have much to say otherwise because I was doing really well, and he was happy with my progress. I told him I stopped taking the pain killers, and he was fine with that. After my surgeon left, I decided to crawl back into bed and take a nap. I was still tired from the Zofran and my headache was lingering. Shortly after I got back into bed, my moms cousin came to visit me. She brought me a small gift, slippers and Princess jelly beans!

She was telling me about her upcoming trip to go see her granddaughter out in San Diego. She stayed for about 45 minutes, after she left I took a nap. When I woke I still had the headache, so I started drinking more water, thinking that maybe I had the headache because I was dehydrated. That did the trick, after I drank a few glasses of water, I was starting to feel better. I got back in my chair, and turned on the television. Around 4:45 another one of my coworkers came to visit me. She brought me a thing of flowers as well. We chatted for about 15 minutes, and then she was off.

Now that I was free to move about on my own, I got up out of my chair and took my 6 walks on my own. Since I wasn't feeling well earlier in the day I still had about three to do. So I decided to take a walk after my coworker left. I had a small loop out I always did out to the elevators and back. Then I sat back down in my chair to watch some television and relax before dinner. I don't pay for television at home, so while I was in the hospital I was binging on HGTV. The rest of the night was low key and relaxing. I went for my remaining walks and then crawled into bed. Around 4 AM, the nurse and patient care tech came into take vitals and draw more labs. My poor arms and hands had had enough of needles. They could not get anything out of my right arm, and went to my left again. I had even been drinking a lot of water because of the dehydration earlier on Monday.

Tuesday morning, one of the Cardiology Attendings came in and woke me up around 6 AM and said he was going to get me ready for discharge. I was feeling much better than I was Monday morning, and I felt I was ready to go home. Shortly thereafter, my nurse came in got me out of bed and into my chair. she took my vitals and gave me some medication. She said I needed to get a shower, chest X-ray, and echo before I could be discharged. I had ordered an omelet for breakfast, and actually ate most of it. I sat in my chair and watched some television for a bit, and enjoyed the sun that was shining into my room. It looked so nice out, and I was ready for some fresh air.

(The beautiful sun shining on my flowers)

The Attending came back in. He was going to remove my drain tubes. Oh god. Everyone had been saying to me that getting the tubes removed was uncomfortable and even hurt. He was getting the dressing around and I asked him if it was going to hurt. He said it may at first, but it was probably going to feel more uncomfortable than anything. He removed the sutures around the tubes (I had 2 separate tubes), he twisted them to make sure they were lose, then he said on the count of three I want you to take a deep breath in and hold it. 1-2-3 {Inhale} as he yanked and pulled both tubes out at once. I gasped, and looked down... seriously, the tubes were each a foot long laying on the pad he had laid on my lap. I thought to myself, Where the heck did those come from?! He was right though, it didn't hurt, but it did feel really weird. 

After getting the tubes removed, the nurse came in to help me get ready for the shower. She attached me to the longer telemetry wires, and got me a new top to put on after. It felt great to move about without the drain tubes! While I was in the shower, the RT stopped up to take my chest X-ray. Oops, they would have to come back. Shortly after I got out of the shower, my parents and my brother stopped by. I told them I was going to be discharged, but I still needed a chest X-ray and echo beforehand. It wasn't long and transport was there to take me for my echo. Mom and dad stayed in my room while I went for my echo because they still needed to be interviewed and get lab work for a study that I had decided to be a part of. A study to see if there is a genetic link or mutation that causes congenital heart disease.

Once down in the pediatric echo lab, the sonographer came to get me and wheeled me around to her room. I knew the girls in the lab from either having my echoes done, or from shadowing there the many times that I had. She had me get on her bed and roll on to my side, it took me a few minutes. I told her I had stopped taking the narcotics because they made me sick, so I was just taking Tylenol. She agreed that the aching I was dealing with was probably better that the heaving from vomiting. While doing my echo we chatted, it was nice to talk to her again, and hear about what had been going on since I had shadowed that past fall. We talked about me passing my pediatric echo boards. She also said she was in the OR before and after my surgery to do the TEE. I thought it was great that she was also doing my baseline echo, and I loved seeing my new valve in actions. She even got an awesome shot of the valve where you could see the leaflets opening and closing! She had me roll into various positions, and she said she was amazed at how much I was moving about. She said she has had adults patients come down for their discharge echo still on narcotics, and they refused to roll for her, and here I was rolling around all over and only taking Tylenol. I have a pretty high tolerance for pain, even my primary said that.

After my echo, she got me back in the wheelchair, and wheeled me back out to where transport would pick me up. A few minutes later, my cardiologist walked around the corner and saw me sitting in my chair hugging my cough pillow. He smiled and laughed, and we chatted for a few minutes. He asked if I was still taking anything for the pain, and I said only Tylenol. He said I could take Ibuprofen instead, but to make sure I took something before I went to bed at night to make sure I got a good nights sleep. Transport came and got me, and wheeled me back to my room. Just as I was being brought back to my room, my mom was coming back from the lab. She said my dad and brother went to run errands and said they would be back in a bit.

Back in my room, my lunch was waiting for me. I had ordered a turkey sandwich on wheat with lettuce mayo and mustard (that was quite the ordeal too, since I was only on a dysphagia 3 diet, I technically was not allowed to have lettuce for fear of choking. I told the diet tech I was going home today, and my nurse initialed the order saying I could have lettuce on my sandwich). I munched on my sandwich, and my nurse came in to go over some discharge paperwork. I told her I still had not had my chest X-ray, so she called them up STAT. They came, took my X-ray, and then after that I was able to get dressed to leave. I already had pants on, as I had been wearing them the majority of the time I was in the hospital. Mom helped me put a tank and t-shirt on. I decided to wear the T-shirt my parents had bought me while I was in the hospital.

(It reads, I'm stronger than you think)

Mom helped me pack up everything I had in my room. My nurse came back in to go over everything with me for the last time, that took about 20 minutes. For the first few weeks I'm not allowed to list anything over 10 pounds. I can't pick up Coco, or even walk her. Once we were done with the paperwork, transport was there to take me down to patient pick-up. Mom called my dad to make sure he was on his way back since they were wheeling me down. The woman who transported me was really nice, and we talked about how much we both loved the Golisano Children's hospital, and how much it had done for our families. Thankfully, there was a little waiting area that had a screen that showed what cars were pulling up in the circle. Once we got to the waiting area, she went behind the desk and brought me a carnation that had a little card attached and read, "Thank you for entrusting your health care to Strong Memorial Hospital." We sat there for about 5 minutes, and then my dad pulled up. She wheeled me out, and said goodbye. Mom helped me into the car, and she and my brother loaded my belongings into the car and then we were off!

The weather was beautiful, and I was so excited to get outside and breathe in some fresh air!! Once we got home, I sat outside with my family for a bit before heading to my bedroom to rest for a bit. It felt great to lay down in my own bed. I turned on Ellen, and ended up falling asleep about 20 minutes later. Even though I had not done a lot that day, it was still a busy day with testing and being discharged.

QOTD: Have any suggestions for things I can do during the day with my limitations? I have coloring books, cards, and Netflix.