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.


Leah said...

you. are. amazing. so inspiring to the rest of us!

Anonymous said...

Thank you so much for sharing with us! I'm undergoing open heart surgery in a little over a week and really appreciated your openness. May God continue to bless you!