Wednesday, May 27, 2015

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)
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.
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?

Saturday, May 16, 2015

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.

Tuesday, May 12, 2015

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 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?

Wednesday, May 6, 2015

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.

Friday, May 1, 2015

How Many Times Can One Person Get Poked For Bloodwork In One Day?

It's been one week since my surgery, so I thought I'd post about how I'm doing. The strides I've made, and the setbacks I've had since getting home. As you probably know, I was discharged home on Tuesday (and I promise to get to the second part of my hospital stay soon). I've had my ups and downs. Today has not been one of my better days, so let's rewind.

Wednesday, my dad went back home so he could work. I was doing well, and we would talk everyday so he could get updates. I sat down on the couch to enjoy my first cup of coffee since my surgery and to see what was on television during the weekdays.

(Coffee and Kelly & Michael - I could get used to this!)

My home visiting nurse came out for the first time to check my vitals and see how I was doing since getting home. She asked me a lot of questions, then she took my blood pressure both while sitting and standing. She also listened to my lungs and heart, and took my blood oxygen saturation and heart rate both at rest and after walking a few laps around the house. She also checked the site where my drain tubes were to make sure they looked good. Then we set up a time for her to come back this morning.

My brother left around noon on Wednesday to get back home so he could do a few things before going back to work on Wednesday. Mom and I sat out in the sun for a while, then decided to grab a bite to eat. Mom asked me what sounded good, and since my brother had warmed up left over Buffalo Wild Wings for his lunch, I wanted that. Mom took me to Buffalo Wild Wings, then we went to Wegmans to pick up some groceries, and some things I needed since getting home. By the time we got to Wegmans I was already pretty exhausted. I know I just had major surgery, but it was just so hard for me to grasp the idea that I used to run between 9-12 miles a week and now I couldn't even make it through the grocery store. Once we got home, I collapsed into my bed to watch Ellen, but that turned into an hour and a half nap. That night mom and I made dinner and then relaxed and watched television. We started to watch Last Man Standing on Netflix, and oh my gosh, the show is completely hysterical! I was laughing so hard, and it really hurt me to laugh.

Yesterday I took it easy because Wednesday seemed to wipe me out so easily. When I woke up it hurt to take deep breaths around the lower lobe of my right lung. Every time I would take a deep breath, it felt like my lung was rubbing against my ribs and cracking. Almost to the point where if I could take a deep breath, it might pop, and the pain would resolve - obviously this would not happen. I monitored it throughout the day, and noticed that it ached more when I either laid on my back, or laid on my right side. When I was up and moving or laying on my left side I did't seem to feel the ache as much. I took it easy most of the day. I relaxed on the back deck for a while in the sun, while mom did some cleaning around my house.

(Hanging in the sun with my Coco)

After lunch we decided to run into town so I could renew Coco's dog license, then I had to run to the bank to cash a few checks. Once we got home I laid on the couch for a few hours and watched a movie. Just as I was drifting off to sleep there was a knock at my front door. Mom answered the door and I over heard the man say he had a delivery for me. Mom signed for it, and the next thing I knew she was coming up the stairs with an Edible Arrangement! She set it on the kitchen table and I came over the check it out. It was so cute, the fruit bouquet was arranged in a Mickey Mouse Clubhouse dish, and attached was a Disney Princess balloon. The small card attached read "Happy Healing, Rockstar!" signed by the secretaries at work!

(How Sweet!)

(Some of the pineapple were even shaped like Mickey!)

When we sat down last evening to watch some television, and I could feel the aching in my lungs again. I ended up falling asleep on the couch last night, and woke up in a lot of pain, so I dragged myself to my bed. I woke up once around 6 am, then again around 8:30 am. I still noticed the pain while laying in bed, and decided to get up and get a cup of coffee. I knew the home visiting nurse would be out to see me soon, and I would mention the pain to her. Then I also had a one week follow-up with my primary late morning. The nurse came and took all my vitals and everything else she did Wednesday. Then she took her time and listened to my lungs, after that she called my primary to tell him that I had crackles in my right lung.

When I followed-up with with him a few hours later, he listened to me and was concerned it could be 3 different things (and here is where I lost my entire day). He was most concerned that I had a pulmonary embolism (blood clot in my lungs). So I had to run next door to the lab for STAT lab work, and then he scheduled a CT Angio to rule out the pulmonary embolism. I went next door to get the lab work, and I knew this was not going to be pretty. The nurses had problems when I was in the hospital. You may also recall that I mentioned that 2 of my IV's blew while I was in the hospital. The phlebotomist called me back, she poked me twice and nothing. Then she had the other phlebotomist try. She also poked me twice and nothing. I knew my veins were shot from being in the hospital. I went back into my primarys office to tell him, and tell him I would try again later. He told me to get something to drink, but to do it soon because I was not supposed to have anything to eat for the CT Angio.

Mom and I went to Tom Wahl's, she ordered lunch and I ordered a medium drink. After that we ran home to let Coco out, and then headed to the imaging office for my CT Angio. For the CT Angio, I needed to get an IV for contrast. Thankfully, the nurse was great, and was able to get the IV in one shot, and I barely felt her poke me. I was in there for the test for roughly 20 minutes, and then mom and I headed to the lab to try my blood work again. I checked in and sat down, and then I was called back to the desk. They said I had no orders in my chart. I explained to the woman that I was at the lab earlier that day and they were unsuccessful at drawing labs, but that the orders should be there. After much waiting, and being called back up to the desk a few different times, they finally got new orders in, and I was called back. The first girl poked me twice with nothing, again. Then someone else came in to try. She also poked me twice, but by some grace of god, the second time she poked me, she was able to get a blood return. I sat there with my fingers crossed that we would be able to draw all four tubes of blood that they needed, and thankfully, we were.

Nine pokes today. NINE. It was now 4:30 in the afternoon and I was completely exhausted from all the running around I was forced to do. However, I had made plans to meet with Nita to get pedicures at 5, and I still wanted to go. I figured that would be relaxing, sitting in a massage chair, while my legs and feet were massaged and my toes painted. Before meeting Nita, I really wanted a snack, so mom took me to Wendy's and I got a small chocolate Frosty and a small fries to dip in the Frosty. Not the most nutritious, but it did satisfy the hunger I had since I was not allowed to eat before my test. The pedicure felt nice, but I was still so tired that it was hard for me to completely enjoy it. Though it was nice to catch up with Nita before she heads out of town next week. And I have to admit, my toes do look pretty cute.

Once I got back into the car from my pedicure, I had a voicemail from my primary's office. They said I didn't have a pulmonary embolism (thank god!), but I do have fluid on my lungs. The fluid is only a small amount and it should resolve on its own. I need to monitor my breathing and temperature all weekend, and then call the office back on Monday. The home visiting nurse will be out to see me Monday as well. For now, the only plans I have for the weekend are rest and relaxation. I really need to slow down so I don't have any more set backs. The next could be worse.