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. ; )

Monster Scramble 10K and 6 Month Post-op Follow-up

MS Monster Scramble 10K:
Sunday, October 18th, my friend Lily came out to Rochester so we could run the MS Monster Scramble together at Mount Hope Cemetery. We had never run together and with our half marathon fast approaching, we desperately needed to get in a test run together. We also agreed that running more than a 5K was needed for both of us. I have not been training as rigorously as I should be considering all that's been going on lately. We also decided to test run part of our Wine and Dine half marathon costumes.

It was FREEZING that morning, and snowflakes were even floating in the air. Lily met me at my house that morning, and we drove up to the race together. The website had us park off site and we were shuttled to the start, which was hassle free. The event had packet pick-up at the start location, which is really one of my only beefs about this race. Pick-up lines were divided, the top half of the alphabet, and the bottom half. Once we got our packets, we pinned our bibs on and ditched our bags they gave us in a tree near the start. Then we found a sunny area to stand in while we waited for the race to start.

(Love a good candid... not)

The Monster Scramble offered a 5K option and a 10K option - which we ran the 10K. I have to admit, early that morning when I woke up, I was really regretting that decision because it was so cold, but ultimately, it ended up being perfect weather for running. The race started at 10 AM, and both the 5K and 10K runners started at the same time. The 10K route was 2 of the 5K loops. The good thing about that was that Lily and I knew what to expect the second time around.

Of course right at the start of the race was a HUGE hill, and I was definitely not looking forward to running that again. There were a few other hills throughout the remainder of the course, but nothing that we couldn't handle. There were also some areas of the course that had old cobblestone instead of pavement, so that was a little dicey. Overall it was a beautiful course, and I would definitely run it again.

(Certainly not the best shot, but whatever)

Overall, I feel Lily and I did well. We finished the 10K in just under 1:18:00 (because there was no timing mat at the start), and we averaged 12:37 min/miles.

(Course map and elevation details)

I really enjoyed this race, and like I said I would run it again. It was definitely something different for me as I have not run at Mt. Hope Cemetery before so it was different scenery, and it was perfect for a Halloween themed race. My only complaint about the race was the packet pick-up the morning of. I honestly didn't know that the race had pre-race packet pick up, and this is my fault as I had been so busy with other stuff the week leading up to the race to even check into it. I'm sure it was held at Fleet feet.

(Pre-race selfie in the sun)

Pros:
Price: It was cheap for a 10K. If I remember correctly, it was $25.00.
Water Stop: The race itself had one water stop (which since the 10K course looped twice it was 2), which I think was plenty for a 10K.
Volunteers: There was an adequate number of volunteers, and they even joined in on the fun and dressed in costumes.
Refreshments: Your typical spread, post race refreshments included fruit, bagels and water.
Shuttle: It was great that the race offered a shuttle from the parking area (it was necessary) The wait to catch the shuttle to and from where we parked was minimal.

Cons:
Race Day Packet Pick-up: I hated that this was held at Mt. Hope Cemetery so we were unable to ditch our bags in my car. I wish they had held it at the Al Sigl building where we parked. Again, my fault that I wasn't paying attention to pre-race packet pick-up.

6 Month Post-op Follow-up:
A few weeks ago I also had my 6 month post-op follow-up with my NEW Cardiologist. I found out who my new Cardiologist was going to be when I called to tell them I found out my new valve was leaking. So then I went right to the URMC website to look him up. I have to say, just reading about his training (residency and fellowships), I was quite impressed.

Once I met him and we started talking he mention that he had been going through my old Cardiologists notes to get to know his patients but he also wanted to hear from me about how I thought things were going, etc. So of course I went into the story about I had volunteered at RIT for the echo students so they could scan me as see some pathology, and that's when I found out it was leaking. I told him that the valve looked like it had more than a mild leak, but it wasn't quite moderate, etc. Then I mentioned that I was a sonographer, and that's how I knew. He mentioned he saw that on my patient information sheet, and we continued talking. He and a student that was shadowing him for the day listened to my heart and lungs, and then he said he wanted to get another echo just to compare it to the post surgery echo I had the day I was discharged from the hospital. He said even though I will have read the echo, we would reconvene after to discuss.

The lead sonographer came to get me from my exam room and she walked me to her echo room. I mentioned to her that my valve was leaking, and that I knew there wasn't any post surgery. While she did my echo we chatted, then after she walked me back into an exam room so my cardiologist could come talk to me once again. He agreed that the valve had a mild leak, but that it wasn't uncommon for all valves to leak, and most of them do directly out of surgery. He said my pulmonary pressures hadn't changed, and that he believed that this would be my "new normal." He said I have no physical restrictions, so I can still run, etc, and if I feel there are any changes I can call him. If not, he wants to see me back in 6 months so we can re-evaluate just to make sure that nothing changes. All of that sounded good to me. He doesn't feel comfortable setting me up for annual visits just yet, and that's fine. I'd rather he be thorough.

Aside from the Monster Scramble and my follow-up, I've been keeping busy. This past weekend I ran another Halloween themed 5K (which I'll be posting about in the near future), and I also had a Halloween party which was a lot of fun. Tomorrow morning my friend Lily and I finally leave for Disney for our half marathon!

QOTD: Did you run any fun Halloween themed races this year?

Cardiology is awesome, but I'm kind of selfish

As of last Friday, I am officially 5 months post-op! So what exactly has been going on since my last post? Well, for one thing, I turned 29. I enjoyed a fun birthday weekend with my friends and family.

I haven't been running as much as I should be, especially when I have a half marathon in 35ish days. I've been getting little runs in here and there, but honestly, it's been bad. Can I also say that I'm so excited that it's fall. I love summer, but fall brings football and tailgating. In September, I spent two weekends in State College with friends going to the Penn State football games. Of course, lucky me, it poured during both games. All that aside, I still had a blast, as always.

(Nita, Eric, Me and Matt before the rain set in for the day)

("Nails")

(Tailgating with my girls, Dani and Kristen)

(Home: 103,000+ Stripe-out under the lights in Happy Valley<3)

Okay, so that's been my last few weekends. Let's get on with my 5 month update. So like I said, Cardiology is awesome, but I'm a little selfish. As much as I LOVE Cardiology, I'd be lying if I said I didn't go into the field of Cards without my own interest in mind. Last week I was feeling a little short of breath and noticed my heart rate was hovering around 105 bpm at rest. I received my flu shot on Wednesday, so I thought maybe it was a side effect of the shot hitting me, or possibly I was trying to fight off a virus that was trying to set it. Nevertheless, I had my coworker do another echo on me to make sure that nothing was actually going on.

Here's what we found:

My new Pulmonic valve is in fact leaking, which annoys me. There's not much I can do about it though.

(Lovely Pulmonic insufficiency)

My pulmonary pressures are mildly elevated. However, if the RV is remodeling and function is improving, it is possible for my pulmonary pressures to be elevated due to the fact that the ventricle is able to produce a pressure. Makes sense, could also be explaining my shortness of breath.

The gradients through the conduit also seem elevated to me. To be honest, I'm not even sure what the mean and peak gradient for my RV-PA conduit should be for the size and type, and I've searched journal articles high and low for values, but come up empty handed. So that will be something I'll have to keep in mind when I go back in November. Hopefully someone will have an answer for me.

(Gradients through the conduit)

Either way, like I said, I'm supposed to have a follow-up with pediatric cardiology in November. I'll keep an eye on things, and if I continue to get worse, then I'll call them sooner.

Moving on. This past Tuesday, I went to RIT in the evening to help a friend out with a lecture he was giving on Pulmonic Stenosis with Intact Ventricular Septum pathology. Though my pathology is a little different, he asked me to stop by so the students could scan me. It was a lot of fun, and the lab at RIT is beautiful. The students took their turn scanning me which took about and hour. My friend asked them questions while they were scanning. "Why does that structure look like that." "What does this measurement tell us?" Etc... It was great to be able to help out and have the students see a little different pathology than I'm sure they're used to.

Any way, that's about all I have for now - nothing too exciting.

QOTD: What's do you like most about the fall?

2015 Stroll for Strong Kids

Good morning, I realize it's been about two and a half weeks since my last post. Let's just say, once I was able to drive again, I've been on the go! My Stroll for Strong Kids recap is long over due, and I feel terrible that I have not posted this yet because it is my favorite event of the year. I will also update you on how recovery has been going the past few weeks.

As you know, I had my open heart surgery at the Golisano Children's Hospital at the end of April, I've actually had all of my surgeries there. This hospital holds a special place in my heart (literally) because they've done so much for me and my family. Every year I fundraise for the Children's Hospital and the Stroll for Strong Kids. The funds raised over the past several years have gone to the construction of the brand new Children's Hospital which is set to open next month! I had a tour of the new facilities a few weeks ago, and to say it is beautiful is an understatement! I will fill you in on that in another post though.

I woke up Saturday May 30th, and it was a beautiful day! We've been very fortunate the past few years that the weather for the stroll has been phenomenal! Nita met my mom and me at my house, and I drove because the Stroll is held in a park close to my home. We headed up to the Stroll around 7:45 AM so we could hit up the Sandy Store before the 5K and stock up on Sandy apparel before it got picked over. Every year I spend hundreds of dollars at the Sandy Store, and this year was no exception. I purchased 5 Sandy Under Armour shirts, and a Sandy key ring! Nita and I ventured back to my car to take care of our purchases, and once we got back to the park it was almost time for the 5K to start.

Nita and I met my mom near the back of the pack, and we also saw some familiar faces from back home. Mom and I both set our watches, that way if we got separated we would have our own times, etc.

(Before the Stroll 5K!)

The race started, and mom and I stuck together for about a mile and a half before I started to pull away from her. I had my timer set for a 1 minute run to 1 minute walk interval. I was feeling pretty good, and I kept trucking along the course. There were some areas of the course that had no shade, and no breeze, and that was hard, there were also a few times where I would run 1 minute and walk 2 minutes. Before I knew it, I was turning the corner to the last 1/10th of the race. I jogged along the course and made my way towards finish. I saw Nita cheering near the finish line, and she snapped a picture of me!

(Rocking recovering and running towards the finish - 5 weeks post-op!)

I crossed the finish line and stopped my watch. I had finished in just over 39 minutes, I'll take it!! Yes, I have some work to do, but considering I had just finished my 2nd post-op 5K, I was really happy (and I wasn't last)!! Mom wasn't too far behind me, so after she finished we walked back over to the center of the park to enjoy the festivities.

The Stroll itself started at 10:30 am, so we watched the start of the stroll. There were so many teams there to celebrate different Strong Kids. Families there to celebrate their child being healthy, to celebrate their children's life, and even to celebrate having such an amazing Children's Hospital right in our back yard. So many smiles and tears. After the stroll started we walked over to the Abbott's truck to get some ice cream (yes, dessert first). We ate our ice cream, then got temporary Sandy tattoos and a Sandy sticker. After that, the food tent had opened and we grabbed a bite to eat before all the strollers finished.

After we finished eating, we walked over to watch the stroll participants finish. Luckily, we saw our friend, Mel, so of course we had to get a picture of the 3 of us together!

(Yay for friends!)

After we saw Mel, we decided to make our way back to the car to head out. On our way out, Nita and I noticed there were some children coloring on the side of a Lexus in the center of the park. We stopped to watch for a minute, and a woman monitoring the car asked us if we wanted to color. Of course!! Nita and I go way back with coloring, so we grabbed a handful of crayons, and the woman pointed us to some open flowers on the front of the car.

(Oh, you know, just coloring a Lexus, no big deal)

(Our work of art!)

We asked about the Lexus, and how it ended up at the Stroll. We were told that Lexus donated the car to the cause for the kids to color. There were certain areas of the Lexus that were able to be colored, as it had a film covering the car. We were also told that the car would be making its way around the area, then it would eventually be covered with a coating so that the color would not come off. Finally, it sounds like the car will be auctioned off at the Children's Hospital Gala this coming fall! Very cool! After we finished coloring we made our way to get a few goofy pictures at the photo booth and then made our way back to the car to head out.

It was another successful year for the Stroll, and no matter what happens I always have a blast at this event. This year was even more special to me because I was actually able to participate despite the fact that I was recovering from my open heart surgery (and I was feeling great)! I owe many thanks to the amazing surgeons, physicians, physician assistants, nurse practitioners, nurses, patient care techs, and any and all staff involved in my care while I was in the hospital recovering. There's still time to donate to the Children's Hospital, if you're interested you can go to my fundraising page and donate now!

Post-Op Recovery Update:

I'm now 7 and a half weeks post-op, and things are still going well. I still have aches and pains that come and go. Currently I'm dealing with quite a bit of mid-sternal pain which I'm sure is due to the activity from this past weekend. I went to my friends for dinner Friday evening and was lifting her nearly 2 year old son. My muscles are not used to doing any type of lifting over the past 8 weeks, so I'm definitely paying for that. Saturday morning, I met my co-worker Linda to bike to canal path. We ended up biking close to 10 miles, and that felt great, but I have a feeling I'm paying for that as well.

I'm also going back to work this coming Monday (June 22nd)! It's hard to believe, but yes my 8 weeks of recovering at home are coming to an end. It went fast, especially these last few weeks that I've been back at my home. I'm nervous to return, and feel like I need to study to go back! Everyone assures me that it comes right back, I'm hoping they're right.

QOTD: Do you have a special event that you look forward to every year? (Running or not running)

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.