Wednesday, September 12, 2018

Surgery is Hard-Recovery is HARDER! (My FRR Surgery & Experience So Far...)


FRR: Front Rib Resection (Surgery for Thoracic Outlet Syndrome)


My mom had just driven me home the three hour trek from Tampa.  That is all I remember. Lots of pain killing goodness goin’ on in my body ; )

She dropped me at my place and settled me in a bit before leaving to walk the dogs. 

I was so proud.  I had done it. Maybe I'm not so bad at this surgery thing...I had gone through the surgery and COULD STILL BREATHE OK (I had some fluid in my lung and had a breath tube to practice and allow my lungs to remember how to expand, but still…).  It’s all over. Phew! Then it hit me:

This is NOT at all OVER. Your journey to being “normal” again is FARRRR from OVER!

And with that epiphany I had a small-ish meltdown and went to bed.

So many times in this recovery I have thought, MAN-this is wayyyy harder than I anticipated.  Who knew spending a few days in the hospital would be the easiest part of this journey?! I’m an athlete. My body’s supposed to “get with it” quicker than this!  Then I usually text my mom “I’m a weak potato” to which she responds “be patient mini-muffin"...or reminds me of my gift of running ;)

To be fair, the surgery itself took MONTHS of decision-making and terror.  I’ve never been more afraid in my life.  The process of diagnosing and pre surgery PT took about 5 months and trips to hospitals in Orlando and Tampa.  



The day I finally scheduled the surgery I stepped out of the office for a minute, came back in, and put a post-it on my desk with 41:10 followed by April 12th --10AM.


Then I prepared. And by prepared I mean tried to distract myself by “getting ready.”  My mom ordered a rental recliner for my apartment for a month.  I bought a snoogle for post surgery sleep.  I booked the hotel mom would be staying at. I got out all my shoulder surgery goodies (including the ice cube aka BEST THING EVERRRR) and sorted my clothes with strapless stretching things accessible.  I didn’t really bother buying food because I didn’t know how long my weird post-surgery appetite would be. It ended up lasting a month.  Smoothies, waffles and pickle cashews were my favorite....and coconut water (though that was either a love or hate depending on the hour).  The first few bites usually tasted good, but then the nausea quickly appeared.

Then the day finally came.  I got to the hospital and quickly changed into my gown.  (PS Tampa general has heat pumps that blow hot air into your gown. LOOOOOVVEEE me some heat!)
The nurses came in and stuck the IV’s in (one oh so conveniently placed in the crease of my elbow-which became a nuisance later).  The anesthesiologist came and I told her that I get very nauseous and Percocet is terrible for me.  She put a nausea patch behind my ear. It helped a lot…but I still threw up later…

I was crying on and off.  I was not sedated at all before the surgery and that made my nerves go crazy.  Last time I was half asleep before they wheeled me in the operating room (drugs work!), but this time I was wide awake and fully aware of my fear. Mom and I watched some Jimmy Fallon Hashtags while waiting to get a few laughs since it helped last time...surgery tradition?? (Let's hope it's a tradition that does not continue bc I don't want to go under the knife again..)


Next thing I knew I was waking up in the PACU recovery room. I was pretty loopy, but I was not nauseous or in pain, so I was SO relieved.  Before surgery I told the doctors that last time I woke up in the PACU I was scared, confused and very emotional, but this time I knew where I was.  Then the nurse checked on me and gave me a “magic button” (aka morphene). I could press it every 6 minutes for pain relief in my IV.  I was not in pain, but I didn’t want to be in pain either, so you better believe I pressed that thing as much as possible. Again-- drugs WORK! Woooo! (and yes, that red cord is my drainage..how lovely right?!...you definitely needed to know that-NOT!)



But drugs also make you verrryyyyy tired. So I slept on and off for an hour or so while others were being wheeled in.  After a while I asked the nurse when I could see my mom.  I had to wait a few hours and she was only allowed for 10 minutes.  My room was not ready for SIX hours and you better believe I was NOT happy about it (mostly because my mom couldn’t be with me until I got to my room). The doctor came in to talk with me about meds and as I looked at him completely confused he told me "you're not going to remember anything I'm telling you..." and I was like "yup...I have no idea what you're saying right now."  Later he came to my room and I asked him if he was trying to talk to me earlier haha!


I finally got to my room and that’s when the meltdown happened.  I was trying to go to the bathroom but I was hooked up to so many things it was such a hassle.  I had to bring the IV stand hooked to my arm and a drain tube coming from my collarbone area.  After a short nap in bed I suddenly felt nausea and despite holding a “barf bag” I still managed to vomit all over myself and my bed. So now I had to be taken to the bathroom again to get cleaned up and changed while my bed was changed.  Helpless and humiliated. OH…and in pain. Throwing up after rib removal is NO BUENO!




I had another moment of nausea in the middle of the night, but a few crackers and ginger ale helped.  I was woken up every 4 hours for stomach injections to prevent blood clot (yay bruises..) but my morning my wake up call began at 7am the next morning with doctors, a blood draw, and an x-ray of my lungs. Apparently I had an EKG in the middle of the night.  I was setting off the machines/monitors bc my crazy low HR (37bpm), so they checked it out haha!  

Around 9am my mom came to the hospital---with  Dunkin Donuts coffee in arms.  “Mom, I love you…But…you know I’m a STARBUCKS girl…” VENTI ICED COLD BREW๐Ÿ’–
Yes, I was very much myself and getting cut up doesn’t change my coffee expectations!....I'll only downsize to a grade to come across less "extra" for an generous--and *attractive-- man ;) haha! So of course...Mom put up with this diva of a daughter and  went down to the hospital starbucks and got me a delicious iced coffee.  Then she helped me put on a headband and eyeliner bc HELLO—Single in a hospital full of DRS ;)


Then I received a bouquet of flowers from my coworkers and it was so sweet!  I was feeling really good at this point.  I was managing oral pain meds so at that point I was going to be discharged the next morning.  YAY! I was not hooked up to anything my second night in the hospital. BEST THING EVERRR.




Here I just want to note that the nurses on the Vascular Floor at Tampa General Hospital were amazing!  I cannot thank them enough!! ๐Ÿ’–๐Ÿ’–๐Ÿ’–   

Leaving the hospital we went straight to Great Clips to get my hair washed. This continues to be a LUXURY…It is exhausting to keep my hand above my head to do simple things like this. 

I was expecting the worst, so the pain was really not that bad.  My whole right side (chest and arm) were numb (still is numb) and VERY sensitive to the touch.  I could not lift my arm and put clothes on over my head, and I did not want clothes to touch the very sensitive nerves so I wore mostly stretchy and strapless for weeks. 

A few weeks after the surgery I had my post-op and the Doctor was happy with my progress, but said it would be awhile until I’ll be my active self again.  I was told to start PT when I got home.
____

At this point my mom was still coming over to help me cut food or bring meals and do laundry and dishes.  I started PT three times a week before work, and I started making progress.  Slowly…but surely.  After about 2 months I could finally lift my arm above my head!  LIFE CHANGING!

Then one day about 2 months after surgery I decided to curl my hair….it looked great…


BUT about halfway through I knew it was a mistake and knew I needed to “abort mission." Oops!  I ended up spending the rest of the weekend on the couch because I was in SO.much.pain.

Things are still challenging for me.  Lifting my arm to change the radio station requires a great deal of effort.  Shopping (reaching for things on the shelves) is exhausting.  The nerves are still trying to attach to the muscle and start firing again, which causes random “shock” pains that run through my chest/arm. 

I have made SO much progress and I don’t forget that…BUT this journey is NOT over.  It requires more preseverence than I anticipated.  To be honest in some moments I want to be done. I’m tired and I yell at God for giving me one painful experience after the next.  I want to give up. Some days I feel like I can't go on like this. I get mad at my body for not working the way it's supposed to.  To be honest, I don't even remember "normal."

People tell me 5 months is not that long…but they’re not living it. It’s not their reality.   Not trying to criticize people trying to be empathetic and I know that they are just trying to stay positive, but just to put it out there that there that sometimes encouragement feels like discounting a situation as not being that bad or not being that long.  

I do not regret this surgery.  I cannot imagine NOT having had it.  Also I’m totally going to put it this out there, but I can tell that “something” is missing in my chest. VERY very weird.  I do think that eventually it will be SO worth all these challenges that my body is facing as my muscles re-learn how to be muscles again ;) Also making up stories for the scar on my neck is getting pretty entertaining haha!   (lately I've been making up a vanity story in which my rib was sticking out more than they other and I didn't like it anymore so I had it removed...then I point to my non surgery side and say "see how the rib on this side isn't noticeable?! hahaha and of course people nod while looking like you have 2 heads bc nothing makes sense at ALL...even when I do confess the truth I'm still the freak...)  

Scar = Much improved!  And to be honest, it doesn't bother me as much as I thought it would.  It's more sensitive to the touch than it is for the eyes.  I thought it would turn people away...silly I know. I could barely look at myself, so who would want to look at me?  I was literally researching "scar removal" 24 hours after surgery while being in the hospital bed.  But God changed my heart and let me see the beauty in my broken.  The way He has with other things in my life. Another Ebenezer-pointing to God's faithfulness. I know there are times when I need to look back on my life…look upon my scars and the Ebenezers and be encouraged about ALL the times that God was faithful to rescue me.  The best thing about this Ebenezer is that not a day goes by that I don't visibly see it, making it hard to forget. 


Was the surgery successful? Well in answering that question, I really don't look at "medical results."  Because I don't need the "end medical opinion" to tell me if it was successful or not. It was. Why? It made me put my hope and trust fully in God and God alone. It took my faith "deeper than my feet could ever wander."  I still remember the weekend before the surgery when I finally surrendered and said, "God I trust you with the outcome...even if the outcome is not what I want. Even if I never run again because of this."  For this reason not only do I consider my surgery a success, I consider my swimming career a success and my teaching career a success.  It might not be "successful" to the world, but this world is not my home.  

Surgery was hard, but the hard doesn't end. Not to sound depressing, but that’s kind of where I’m at right now.  I'm getting stronger and certainly healing, but I'm also discouraged and tired of being on this path.  I’m worn down and longing for a finish line.  If you have had health challenges of your own or are currently experiencing them, I'm sure you can relate to this.   Sometimes people tell me I'm strong or I'm a fighter...but I don't really feel like I've had a choice. What are the other options? Just keep doing what need to be done while trying to keep my head up? I hope that in a very short while, I will be 100%.  I hope that one day I'll say, "Remember that year I needed help washing my hair every weekend?!  So glad THAT'S over!"   Also, I considered myself a prickly pear before...as in "don't touch me," but now that is even MORE true.  My friend gave me a hug the other day and it hurt SO bad.  THIS...SO true. Hugs CAN and DO hurt...but handing me a cup of coffee is a great alternative ;) 




It will likely be a full year for total recovery...so April 2019.  We're looking at 2 more months of PT, so my goal is to graduate by Thansgiving! At my most recent appointment I was told that a "redo" surgery would not be needed.  Yay!!!  It is also unlikely that I will move forward with having my left side done.  Often this is a bilateral problem and I do experience symptoms on my left side, but not at the extent of what I was experiencing on my right side. Another surgeon wanted me to do both sides within months of each other, but for now we have opted out of that....after all, apparently I'm "too young and pretty to have another go 'round" --thanks doc ;) 

As much as this has taken a lot of hard work and persistence on my part, I want to thank everyone who has continued to support and pray for me.  Everyday I walk through the door I see all your beautiful words of encouragement and I feel like I have so many cheering me on. Thank you!  As I continue on this journey, I remember that every body is different and every story of recovery is different. 



...And so my story does not end here.  It will take a lot more time and effort to "get back to where I was."  Kind of reminds me of my first time swimming the dreaded mile...you keep going and going and wondering if it's ever going to end.  But nope..you just flip at the wall to do another lap.  So here's to another flip!..and many more flips in the coming months. 

The word "steadfast" has been on my heart a lot this year...meaning firm and unwavering.  Sometimes you just need to stand. The waves crash and the wind blows, but you continue to trust that God is there and God is good. 



Please continue to pray for strength, healing, energy and encouragement to continue this journey๐Ÿ’•