Tuesday, July 30, 2013

Post Transplant: Ice Ice Baby...

Submitted by Laura on Mon, 12/31/2012 - 2:58pm

I am sorry I've been missing for a while! The past week has been busy, draining, scary, emotional and happy....quite a journey.  On Dec 23rd, I woke up suddenly at 6 am, sweating and feeling like there was someone sitting on my chest.  Obviously my first thought was heart attack.  The doctors ordered a CT scan with contrast and found there was some fluid build up around my heart. This can happen with transplant, so they started out by just watching my triponin levels and monitoring me.  My lungs looked the same - not yet expanded and pockets of fluid build-up.  This was causing shortness of breath and pain.
So, Christmas Eve I was starting to become very short of breath and had a lot of pain.  I was about an 11 on a scale of 1-10.  Christmas day, the doctor suggested we schedule a thoracotomy for Dec 26, which means they would open my transplant incision and clean out the fluid from the 'pockets' and clear out the fluid around my heart.  In speaking with Dr. Schwartz, I explained I could simply not go another day with how I was feeling....I couldn't breathe, I felt like I was quickly deteriorating and it was too scary to wait.  He agreed it was better not to wait, so he offered to perform the surgery that day (Christmas).  Within 2 hours I was wheeled off to the OR with Joe and my Mom waiting for me.
I was sedated and had a breathing tube until Dec 28.  Someone messed up and wasn't paying attention...the sedative stopped working around 4:30 am and I woke up barely able to breathe, hands tied down, not able to reach the nurse button, my room door was closed so no one could hear me bang the bed.  I sat there watching the clock for 30 minutes before anyone noticed I was awake.  That was pretty scary for me.... Around 7 am, they started the process of weaning me off the breathing tube. They fully removed the tube around 7:30 am.
So.....I basically started the healing process all over again. The pain was pretty intense, so they put in a new epidural line and tried a bunch of pain meds to find the right mix.  I couldn't do much because the pain was so bad. I had 5 chest tubes.  They removed 2 on the 29th. I started to feel better on the 30th, once they removed the other 3 chest tubes, they do cause a lot of the pain.
My x-rays are looking good, my lungs are now expanded!  They are expanded more now than they were after transplant, so the thoracotomy was successful. Today they removed my neck IV line and the pee-pee catheter.  I am slowly losing lines =).  They do want to take another x-ray because the doctor did not hear as much air in the lower left lung than he does in the lower right, so they are investigating this.
I will be seeing Dr. Wigfield today and he will decide if I can go back to the Tower 5 rooms, out of ICU.  I don't anticipate any road-blocks to this, but Wigfield may have a reason to keep me in ICU one more day.  I did go for a walk this morning, and I didn't have to stop to rest!!  My O2 saturation didn't even go down on my walk....slow and steady baby! I'm so happy about this.  The nurses and staff seemed to be really impressed with how independent I am and keep mentioning that over and over, so that makes me feel really good about my progress.  I still have this crazy pain under my left armpit/boob that breaks through every couple hours, but the Delauten pain med seems to help this.
So, overall, I am back to doing great again.  You are probably wondering my I named this blog Ice Ice Baby?  Well, to show you how well I am doing, I am crossing one goal off my list.  I DANCED!  I danced and didn't lose my breath and I didn't cough!  Vanilla Ice was on The View and I caught his performance of Ice Ice Baby and I Chair Danced that song out baby! Even the nurse saw me dancing and said, "So this is the REAL Laura, huh?" I am counting this chair dancing! My arms up and down, my torso swaying, head bobbing....It felt good.  When the song was over I just looked at Joe and broke down crying.  I just can't believe I did that and didn't lose breath, my saturation stayed the same and I didn't cough. It was amazing.  As Steve would say, "It f***ing blew my mind". I am crying as I write this, I just cannot believe what I just did today.  I am not even thinking of this setback now - I am just looking forward to meeting more of my goals.
The next step is to pass my new swallowing test so I can drink and eat again.  More to come on that!  Also, I need to start learning to breath like a normal person again.  I am trying really hard to not rely on pursed lip breathing, but instead use my diaphragm to breath correctly.  This is REALLY hard to do, to retrain yourself to breathe....it's supposed to be natural!  I tried to focus on this on my walk this AM and I think that's why I was able to get all the way around without stopping.
Cross your fingers I get to go back to the hotel like rooms on Tower 5 today =)  Thank you for your support and comments on facebook.  I do read them, but just don't have the energy or time to respond to everyone. It is seriously always busy here, someone is always in my room needing to test me, talk to me, exercise me, etc.  But, please know your comments are so very encouraging and I get such joy reading them.
Thank you again to my donor and their family, this is such an amazing gift.  I love all of you,  XO


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