Tuesday, October 29, 2013

Saturday marks month 1 post transplant

Everyone is asking about my surgery so far, and it's a story I want to share. People say I am a inspiration to them because I have battled Cystic Fibrosis for 33 yrs. I am blessed from all the support over those years from my parents, my aunt and uncle, my cousins, my amazing wife, her amazing family, my best friends, my fellow brother/sister firefighters, EMT's, Paramedics, Dispatchers, the list goes on. Nearly 20 years in emergency services made me who I am today....you all made me "Bubba". For the first time in a long time, I can happily say, Bubba is back baby !!! 

That being said this story would not have a happy ending if it wasn't for the true hero of the story. That unknown person that donated their organs so others may live. It's no longer a story about me, it's a legacy about us. I will spend every moment I have, doing my best to honor this hero, and hopefully in time I can learn more about this hero and share their story, like I am about to share mine! 

For 9 months I have been lower then low mentally and physically. Being tied to oxygen 24/7, not having the physical energy to leave to house, or even doing simple things around the house like showering. A few days before the call, my wife came up with a trip with my son to legoland Saturday October 12 in the AM. I wanted to but was worried it would be way to much to handle. So I went to bed early and next thing I know it's 745am Saturday and my phone is ringing. I knew what it was before looking at the number, then I saw the number and said "hello Lisa (transplant coordinator)! Her reply....what are you doing today? My response..not going to legoland I bet but getting something better. She said " you're right, everything looks perfect, eat a light breakfast and see you in a hour!!! " 

Organized panic began...showers, emotional goodbye to Casey and off to dunkin donuts in 20 mins. We arrived at the hospital ICU room around 10ish with my Dr. Palaez, my surgeon, all ready for me. Immediately 2 16 gauge iv's were next to me in bed, aka straws, Placed after 4 missed attempts. Now my fellow EMS providers, like myself, during our training loved the idea of using 16 gauge needles. Well, this was the start of being humbled from my earlier years as a paramedic. 
 Next blood gases...finally hit the artery on attempt 4, again I wanted to scream but realized this is just the beginning. Then Chest X-rays, iv antibiotics and fluids plus breathing treatments. All of this within an hour, and my arms are already black and blue. Now it was my turn to fire off questions trying to get some info about the donor. I just wanted basic info age, and where the team was going. Why? Curiosity, because I know what happens behind the scenes, and piece of mind on quality of the organ. All they would give me, after hours of interigatting numerous team members was the situation was ridiculously rare, donor was much younger then me (also rare) and they needed to fly out to procure the organs. They estimated at one point they would see the organs in a hour and a half, and they needed to fly fixed wing. So folks...20 mins from hospital to airport and wheels up, 30 min flight, and another 20 I would say once they arrive....bottom line the organs were relatively close, which time is so critical once the organs are removed. This info is what I wanted and really comforted me. 

Time moved slow and fast, if that makes sense. Next thing I know it's time to say goodbye and head to the OR. The emotions can never be written, not enough room even in a blog. 

Once in the OR, I saw all the instruments and rest of the surgeons...all 4 of them, plus the team of about 20 people that were ready to make this story a success. Next, more fun with the anastesiologist. It was atrial line time.....I begged for sedation through my port before they did this but no go....so it took 4 attempts to get a atrial line in my wrist.....finally he said....Kevin it's time to sleep....I laughed and said ok. In all my humor, even with my lead surgeon there, I requested they add some Dave Matthews to their song list, that they already had on....no laughing at me naked....and let God guide their great skills. Just about everyone chuckled a little and agreed....so propofol was going in.( on a side note....why would Michael Jackson want this shit) it burns like hell going in....my anastesiologist says count to 10..... Yeah I counted to 20 before it hit. Right before discharge the anastesiologist came to see me and even couldn't believe how much propofol it took before I was out. 

Pre-OP started after 630 pm....I am glad I was out because I know my family was going through hell waiting to hear how it was going. They estimated up to 10 hrs....well the ordeal lasted 6 hrs and a few hours after that I was already waking up. The first person I could clearly see was my wife beautiful wife Michele. He smile was something I will never forget. I saw someone else who I later realized was my father-in-law, but for the first several hours anything past 2 ft from my face was a blur. Knowing they were there was the greatest feeling....I also instantly felt how awesome it was to breathe. Being on the vent felt great, my lungs were expanding beautifully and I knew things were good. The only thing that sucked was them pulling the tube. That sucked !!! I have had 3 patients wake up after I intubated them, and two that pulled out their tubes before I could....it hurt being partially sedated...couldn't image just pulling it out. 

Within 36 hours I was already moved from ICU into a step down unit. It was a very unexpected quick move. That next week was tough. I wasn't getting more then 2 hrs of sleep a day, the chest tubes hurt and the pain meds weren't touching the pain. I was walking little by little. The big issue was the loss of range of motion in my arms and legs. For several days I had no muscle strength to even lift my arms up. My right side came back in a week, but even today I am barely able to move my left arm and I now have left foot drop, which has been more painful the the surgery itself. 

I have also gained back 12 lbs in 12 days, so I am back to my very low pre-transplant weight...so we have at least 30 lbs to go before my doctors and I will feel better. As for the lungs, they are healing above what was expected this early, so that's amazing news. For the next few months I will be focused on rehab, and getting stronger so I can start being the father I want to be to my son and the husband I want to be to my wife. 

As for fishing, several ideas and projects are in the works for my return so stay tuned.

Thanks again to everyone who has really help support my family and I through these tough years,and thank you to all the healthcare professionals at Florida hospital, and to my donor hero! 

Here are some photos right before and after the surgery. I do have a photo of old lungs, it's nasty but feel free to email me direct and I will send it. It's graphic but honestly amazing because who could think I would still be breathing with what I had. 

Air transport from my ICU window...we know they used fixed wing to get to the donor, but I am sure they used this to get to the executive airport which is like a 20 min drive. This was near the time they left to get the lungs. 

This was the morning after surgery.

My first day walking without all 4 chest tubes

I dressed up as the dark night paramedic of old for my bronchoscopy on Halloween day! In the middle is the quarter back of this all-star team, Dr. Palaez. He and his staff have to wear the white coats...it keeps there angel wings in !!!! 

All the meds I take now each day to keep away rejection and infection. I love each one of them! 

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