Monday, August 20, 2012

Open Heart Surgery Experience: Part 3

I think this may be my final post in this very lengthy to whoever reads this, thanks for hanging in! It is so therapeutic for me to write about all of this.

So here we go...

Coming home like I said in my last post was a little scary driving in the car, but I was sure happy to get into my parent's comfy bed. My dog Sonny was so worried when I got home and definitely knew something was not right with me. Because my parent's bed is so tall he has never been able to jump up that high. But as soon as I laid down he FLEW over the top of me onto the bed and put his head on my lap, all while looking up at me with worried eyes. It was so sweet, and he has been my best friend and stuck with me every day since. He is so funny because he knows not to come near my chest too, he just will stay by my waist or down by my feet and make sure he steers clear of that area...what a smart doggie!

When I got home I was so incredibly nauseated. What else is new? My sweet dad went out and bought everything and anything that sounded remotely good and I lived off some pretty weird things. Popsicles, edamame, pasta with basil and tomatoes, sun chips, ramen, smoothies, and crackers...that's about it. My poor mom would come in and say, "ok, what are you going to eat? You have to eat so you can take your meds." I mostly would just give her the glare and the frustrated face because nothing sounded good at all. Even that weird list only sounded good 40% of the time.

Figuring out medications was also sure a challenge because I had about 15 new ones all at really weird times. Once again, my poor mom spent hours trying to put together a schedule in her phone with alarms that went of every hour sometimes....including all through the night. It was definitely like having a new baby in the house for my parents considering they were up most nights with me. It was pretty funny because Walgreens called me one day and said, "We noticed you are on A LOT of new medications and we just wanted to see if you had any questions." (So nice right?) I just kind of chuckled because I am sure I am on their radar since I own stock in that place from so many prescription of the years. I replied, "Yes, actually I do have a question! I have a ton of nausea and I was wondering which one of these meds would be making me sick." Now it was his turn to chuckle as he replied, "I am very sorry, but you are on 15 new meds on top of the ones you were taking before, and every single one has nausea as a side effect..." Go figure and just my luck.

(Just some of my many, many meds.)

One of the other crazy parts of coming home was just trying to get comfortable in bed. At least in the hospital you can raise and lower the feet and the head of the bed to adjust and be comfortable... at home that just isn't so. My mom spent hours collectively, trying to figure out how to make me comfortable. We would have 10 pillows stacked in all different directions with two under my arms, one under my leg, a neck pillow, a towel rolled to support my lower name it. It sounds ridiculous but since everything hurt so bad it was just impossible to get comfy. What people don't realize is that when they cut your chest open and pull that back it really hurts your ribs and the muscles in your back. On top of that, your body creates its own splint essentially and you start to hold your body different than before to protect your chest. This makes for really tight neck and back and shoulders from sitting and walking differently. Collectively everything on your whole person just really hurts. After two days of trial and error finally we got me comfy and figured out what works which included about 10 to 12 pillows in ridiculous places.

One of the more frustrating experiences with this getting comfy situation was the fact that I gained 22 pounds in water weight...seriously. I was so puffy and swollen that my fingers and toes looked like little hot dogs! Well, to get rid of that water they have to put you on a pretty strong diuretic called Lasix. What does a diuretic do?? Makes you you have never peed before. So what would happen is it would take us 10 minutes to get in bed and I would finally get so comfy and then suddenly I had to go to the bathroom really, really, really bad! So we would have to get up (with my mom having to help), go to the bathroom, go get laid back down and then suddenly I had to go again! Grrrr....many nights were like this. Peeing is just so inconvenient, it really is. All night and all day it was up and down until I was finally back down to my weight pre-surgery. I hate catheters...but one would have been really, really nice for that little while.

On a more serious note, I have some very incredible spiritual experiences throughout this difficult time. I have felt the love of my Heavenly Father so strongly and know that the only way I have been able to get through these many years of heartache, pain, and difficulty is because of the Lord and the knowledge of the atonement. I have been able to truly feel the prayers of people all over the world who have prayed specifically for me and I can't tell you what that feels like. It really almost feels like you are being lifted up by so many and you can't fully feel the weight of what you are asked to bear. I am just so grateful for the support that so many have given me.

One of the most special experiences I had happened one night a couple of days out of the hospital. I had taken all the medication I could take and was still in excruciating pain. It was really late at night and I wanted to fall asleep so badly but could not get comfortable because of how bad I hurt. Tears ran down my cheeks and I felt so alone and in so much pain. In that moment I turned to prayer and begged the Lord for help and comfort and explained that I could not do this alone. Suddenly I felt the room fill with angels from the other side...not just any angels, but some of the patients that I adored and cared for in their final days. I could tell you each name of the spirits that were there and felt their peace and love so strongly. My grandpa was also there and throughout my life, especially through these trials, I have felt his loving hand with me each step of the way. It was a powerful experience and I felt so much peace and love and my pain quickly subsided and a fell fast asleep. I can never deny the power of that experience and I know that our Heavenly Father will not leave us comfortless, especially when we turn to him in our most difficult moments that we have been asked to bear. It was so nice to know that I have people helping me on both sides. What a beautiful and amazing experience.

Throughout the next week we just tried to take it a day at a time, and sometimes an hour at a time. My family has been so kind to me and we have had to adjust to things quite a bit. I don't know how my mom does it, but my whole family ended up getting sick except for her. So here she was cooking and cleaning, taking care of me (which is a full time job), working on the phones for my parent's company, taking care of the other two who are sick, and doing all of shopping and all other things like that. She just is such a champ and a super mom if you ask me. Everyone in my family has really just done so much for me and there is just absolutely no way for me to be able to repay them for how much are and love they have shown me.

Well, last week on monday rolled around and I was out of a couple of medications so we called up to the doctor's office for a refill. I asked my mom to just mention some of the weird things that I had been feeling and how much pain I was in. We explained that when I would roll on my left side or I would exert I would feel short of breath and my heart would do these really weird beats. It would flutter, or almost feel like it was vibrating, and then it would beat extremely hard after that. I didn't think it was a big deal and thought that that was kind of normal, along with the amount of pain I was feeling after open heart. I mean, how do you really know what pain is bad and what pain is normal? Well, I guess it wasn't normal and they said to go to the ER right then. We tried to get out of going but they insisted that that was not good and I needed to be checked out.

When I got there I was able to perform very well and show on the monitors exactly what was happening. When I would roll on my side my heart literally went hay-wire and looked pretty sweet on the monitors. What they found was that I had Pericarditis which is when the sac around your heart becomes inflamed and infected. I guess that explains what was causing all that extra pain! They also found fluid in my right lung and decided that because of the inflammation it was putting a lot of stress on my heart and was causing my heart to have premature ventricular contractions or PVC's. Those were the weird beats and rhythms I was feeling. This makes it so that the ventricles in your heart are pumping blood out before they have time to fully fill up making it impossible to get the proper amount of oxygen and blood to your organs.

So, they admitted me that day once again to the hospital where they administered a lot of steroids to get the inflammation down, beta blockers to slow my heart and blood pressure, and anti-arrhythmia medication to stop the PVC's. They kept me for 4 days to really monitor and watch because of how very hard these medications are on your body and want to make sure that they were working for me on the particular dose they gave me. Time in the hospital was just the usual and I had very good care with some awesome nurses and the incredible Doctor Hwang. They call him the electrician because he deals with all the electrical part of your heart and is really the best you can have in this state. I am so grateful for doctors and nurses who dedicate their lives to making our lives better! After 4 days I went home even though I was feeling so lousy. Because my vitals were stable it didn't much matter how I felt, I was ok to go. Yay! Healing at home is always way better than being in the hospital.

Now that I am home I can definitely feel that the steroids worked because I do not have as much pain and pressure in my chest. I am finally off of narcotics which makes me feel a lot better and so now I just have to deal with these beta blockers that are really giving me a run for my money. I feel extremely tired because of how slowly it makes your heart beat, very nauseated, hot all the time, and all around crummy. They said to give it about 2-6 weeks to adjust and I should start feeling a lot better.

(This was the fortune cookie I got the day before I went into the hospital. Thanks for nothin' Panda!)

Well, all I can say is that this has been quite the adventure. Definitely nothing I would ever recommend to anyone, but oddly enough I am grateful for the experience. It is times like these I become a stronger person and more fully able to mature and grow.  One of my favorite quotes I have come to embrace during this time is by Louisa May Alcott who said, "I am not afraid of storms, for I am learning how to sail my ship." And truly, this experience...all these challenges over the last 7 years of my life...hundreds of procedures, doctors, tests, pokes, and tears that have been the storms that will shape me into a better and more patient person. Let's just let this be the last big storm for a while though....would that be ok? :) My ship is all tuckered out.

Thanks for reading! More later.

Ps. Look how good my incision looks after just 3 weeks! I mean, I don't want a giant scar...but there better be something there to show for all this pain and anguish! Hahaha, kidding, but seriously. He did an incredible job.

Wednesday, August 8, 2012

Open Heart Surgery Experience: Part 2

Before surgery I was kind of nervous about being in the ICU. It just sounds scary because that is where really sick people go. However, it ended up being really great and I was well taken care with such attentive nurses. There were a lot of really sick people there with me and 3 people passed away in the 2 days I was there. One, sadly was a 21 year old boy that my dad helped give a blessing to, another was an older man and his family that took the news pretty hard, and one man who died completely alone. It helped give a lot of perspective on what I was going through and was difficult to see these families struggle.

One of the hardest parts about being in ICU was that I just had tubes and all kinds of stuff stuck all over in me! I had three chest tubes that look like this:

They were sutured into my chest through my abdominal area. One went behind my heart, one went in front of my heart, and one went to the cavity where my lungs sit to drain any blood and excess fluid. Then I had a central line sutured into my neck that looks like this:

Two pace maker wires that look like this:

that stuck out of my chest.

And finally, a catheter in my wrist that was sutured in that looked like a giant IV, a regular IV, and a urinary catheter (I for sure won't show you a picture of that ;)).

Well, guess how much fun it is to get all of those things out?? Zero. Part of the problem was I gained 22 pounds in water weight from the surgery and was very puffy and swollen. This made where they sewed all of these lines in super tight and very hard to cut out which wasn't fun. Then pulling out the chest tubes was just no bueno. That was my least favorite and yet it gave a lot of relief after they were finally out. They have to yank them out (while you are awake I might add) slowly but fast at the same time and it just did not feel good at all. The other problem was when they took them out I got some air under my skin on my chest that was really uncomfortable...especially when they had to push on my already sensitive chest pretty hard to get it out. It sounded crackly like rice crispies under my skin...weird and painful sensation. My wrist line hurt pretty bad too because they blew the vein so bad and being on so many blood thinners and having to put so much pressure on it caused a lot of bruising that hurts a lot still to this day.

My final complaint about all of this: the tape. Isn't there a better way?! I know what you are thinking, tape is not that big of a deal. But let me just tell you, you have tape everywhere. Not to mention after you have just had it with being poked and prodded but you made it through a tried to be way tough, then they come yank that stupid stuff off and it would just make me cry. It was the straw that broke the camel's back and it just makes me so mad. It is my mission to come up with a better way.

After we got the tubes out it was time to start walking a lot. I really did not feel like walking at all but the nurses were very persistent and I got up and had to admit I felt a lot better after I got up. I made it my goal to walk a little more than the time before and I started doing a lot better. Nausea was a real challenge through all of this and I just was so couldn't even mention food in front of me without just wanting to throw up. I think what made it really hard was, bless my doctor's heart because he is incredible, but some of his bedside manner was interesting. I think in his mind this is no big deal and so he discontinued all of my IV meds very quickly, which left everyone pretty surprised. And when I say quickly, I mean day 2. This meant that since I was already nauseated, now doing meds by mouth was going to make things much, much worse. We finally switched some things around and the nausea got slightly better...but still rough.

On the morning of day three I was able to leave ICU!

As much as I loved all of the staff in ICU, I was ready to move on because that meant closer to going home!

I once again had really great care in the PCU and loved all of my nurses up until the last day. I had one that reminded me of Julie Andrews and was pure gentle and caring. One that was a graveyard nurse that was my age, looked just like Taylor Swift, and we had so many of the same interests. She was married with a 6 month old baby and was just so caring and really lifted my spirits. It was fun too because I really do not sleep at night and she only had one other patient so she would come in and chat with me. I had another one who was super attentive and caring and had just found out she was pregnant and I was the first (besides her husband) to know! I also had a really good cardiac rehab specialist named Sean who looked like an Asian Jay-Z and was very cool and great to work with. I liked all of them and secretly I think they were all happy to have a young patient. I definitely am not the norm at all and so many would walk in my room in total shock that a 23 year old was having this surgery. They do these on generally 50 and older and young kids and babies.

I did pretty well in the PCU we just always have a hard time with pain control. I have a VERY high tolerance for medications, just like my dad and grandma, and so it takes so much more medication to do anything for me than the average person. Once we changed a few things around I did a lot better but still struggled with the nausea most. It is such a catch 22 because I hate how the narcotics make me feel and how sick they make me, but you have to stay on top of the pain as well. Very hard to find that balance.

I had few complications gratefully, only that they could not get my blood pressure up and also that my hematocrit was really low so I needed a blood transfusion. This really freaked out my mom and she  asked if she could just give me hers. The doctor laughed and tried to explain that blood has to go through rigorous testing before they use it and is generally very safe. It felt kind of weird getting someone else's blood and just wonder who's I have! I felt so much better after getting some blood and a lot of iron in me and this is really what helped me turn the corner to go home. But now with even more fluid in me I was so puffy! That meant they had to put me on a diuretic which made me have to tinkle literally every 10 minutes. Going to the bathroom that often is maddening! As soon as I would lay down and get comfortable, which was quite the feat, I would have to get up again. It was a necessary evil.

Finally, on day 4 it looked like I would be able to go home! I was so ready, especially because the nurse I had that day I had a really hard time with. She was a very nice lady, but every time she would start something she would get half way done and then get sidetracked. Then, she put my call light very far away and so I tried to get up by myself and ended up spilling apple juice everywhere, dropping all my pills and ended up in a very uncomfortable position. Half an hour later she came in and chewed me out for trying to get up by myself and that I should not do that. Well, it makes it kind of hard if you don't give me the call light, you silly. I just got teary and really emotional when gratefully my parents came. Then, when she was taking out my central line she got half way through it and said, "oh shoot, I forgot to give something to this other patient!" I then politely but firmly said, "shouldn't we get through and finish this kind of important thing first? This line does go straight to my heart..." Thankfully she finished, but I was just so done. Glad I was leaving!

This is me heading out with my favorite CNA Jeanette! She was great, and very helpful.

The ride home from Salt Lake was not super fun, but my dad drove as carefully as possible and did a great job. It was bitter sweet saying good-bye to all the people who took such good care of me, but I was definitely ready to be in my bed at home and taken care of by my parents, who are incredible! Thank you St. Mark's for such a positive experience through a difficult time.

To be continued....
Monday, August 6, 2012

Open Heart Surgery Experience: Part 1

Well, I am not sure how to even start, but I wanted to share some of my experiences of what this has been like to go through. I think that when you go through something like this it is so important to document not only for yourself, but for others. So here goes nothing....

When we got word on wednesday that I would be going in for open heart surgery on Friday I nervous and so grateful at the same time. I knew that this is what needed to happen and it needed to happen fast. We felt super comfortable with this surgeon, Dr. Thorne and knew that I was in the best of hands.

However, that did not make knowing they were going to saw open my chest, stop my heart/go on by-pass, and then have a very difficult recovery - any easier. I wasn't nervous about the risks and knew everything would be ok and my parents felt good about it too, even if we were nervous.

Well, friday came very quickly and I did as much research and tried to prepare myself for what recovery would be like. I was nervous, but was confident that I would be able to get through it. I knew it was not going to be fun, but nothing could prepare me for the pain that would lie ahead.

We got there at 6 AM sharp, ready to go in and I had the nervous tummy and jitters for sure. I had a little bit of an embarrassing moment that morning as well and wished I could have put my foot in my mouth. I went into the bathroom to get changed into my surgical gown and when I came out there was a very jolly, red-haired, 25 year old guy dressed in brown robes. He looked just like Obi Wan Kenobi (ya, I for sure had to look up how to spell that) and assumed maybe he came around dressed up to cheer up patients. I said to him, "I like your outfit!" in kind of a joking way when I realized we were in a Catholic hospital. He laughed pretty hard and replied, "I like yours! It is not every day you see a Monk right?" Aye carumba. I consider myself a pretty cultured person but I just did not put two and two together and he wasn't wearing the cross. Silly me, I am just lucky he thought it was funny and was not offended.

After a little bit of an emotional good-bye to my family they pumped me full of "I don't care medicine" and sent me to the freezing operating room. It was a regular morning for everyone else in that O.R. and for me a monumental, scary, and life changing moment. Want U Back by Cher Lloyd and Justin Bieber was blasting and they explained that country would be playing during the surgery. So funny. I wanted to ask them if they were sure they didn't want classical music instead that encourages better concentration??? Just kidding, but seriously.

The anesthesiologist came in to administer the epidural which is a morphine chest block that they said wouldn't hurt going in, especially with the "I don't care medicine". Well, I should just know that I don't anything normal and they had a really hard time getting the needle in and numbing me up. It took a good 20 to 25 minutes of him shoving that needle all over in my back as the nurse cradled me and continued to apologize while I tried to be brave. But it hurt. Really bad. I just wanted them to get that gas mask on me and fast because the "I don't care medicine" did not work diddly...I definitely cared.

Next thing I knew they had the gas mask on me and I was out like a light. I was proud of how strong my parents were during this 5-6 hour surger because it would be no fun waiting. My mom said she only had one "wibbly" moment as she called it, where she got emotional and it was when they called her to say they were stopping my heart and putting me on bypass. That would be scary! I am glad I was blissfully unaware.

Surgery went just as planned and they were able to remove the device that was only working at 75% and leaking the other 25%. Here is a picture and you can kind of see on the edges where the tissue did not form...this is where the leak was occurring.

After surgery the doc came in with this thing in a urine specimen cup shaking it like a maraca. He was pretty proud of it and said he was adding it to his collection! Ha! I was thinking more of giving us a fund?? That thing was 17 thousand dollars pricey. Ya, right...that would never happen, but a girl can dream!

Waking up was about the least fun thing I have ever done. I don't know if you can tell from this picture:

but I am not a happy camper. The pain waking up was intense, even with the chest block. It doesn't completely numb like you think it would, but can't imagine what it would be like without it. Definitely would hurt a lot worse! So I can't complain. My throat hurt a lot from the intubation tube, but I was so happy I didn't wake up with that thing down my throat. I had a lot of anxiety about that and gratefully they are one of two hospitals in the country that don't leave it in. I couldn't speak really because of my throat and all that would come out were little squeaks. I would have done just about anything to have water, but I couldn't have it. They just swabbed my mouth and that honestly better nothing.

My nausea was out of control and I threw up about 5 times. I just can't explain what that feels like with a chest that has just been opened....just the epitome of how to be completely miserable. After a while we got me to stop throwing up and I was able to have a few ice was heaven.

I was so grateful to have the best ICU/Recovery nurse ever, Nicki. She took such good care and was so kind and compassionate. She definitely knew what she was doing and I really appreciated the care I received. We only had one mishap when the bed stopped working and I had to stand up and walk...on my first day. Secretly I think this is one of the better things that happened to help with my healing.

To be continued...