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Dry Run Blues

January 3, 2018

 

<--leaving after no sleep and no lungs.       On Dec 7th after days of not feeling well, i finally mustered up enough energy to get outta the house and get my butt to kohls to do a little Christmas shopping... when parking in the lot i got my first call that they may have a match of lungs for me but there is another center also trying to get the lungs. They informed me that the lungs weren't perfect but believed they would be after undergoing ex-vivo (a therapy when lungs are treated outside donors body to improve quality of lungs being transplanted) and since there is no definitive time on how long my current lungs will last since I am currently needing 6 Liters of oxygen.. I am not in any shape to be picky and as long as the professionals deem them safe, i'll leave the rest to the universe. They informed me that it was a patient that was on life support and the family was taking him off the vent so i would have a full 8-10 hrs to prepare before i needed to come in if they received the lungs IF they were able to get the lungs. I gave my official consent, got off the phone and continued to attempt my shopping as i silently freaked out over the possibility of getting new lungs in 8 hrs!! 2 very long hours later i got a call from the hospital saying the lungs were being given to someone else at a different center.  

 

On December 15th, after completing labs and followup appointments (in the previous weeks) with UPenn in philadelphia, i was officially made active on the transplant list!

 

On December 23rd at 10:30PM I received a call from Upenn transplant center that they have a set of lungs that they believe would be a perfect match for me!! The lungs were from a 17 yr old that was in an unfortunate accident and was just confirmed brain dead. He had no previous smoking history and his family had made the tough decision to take him off life support and donate his organs. I verbally accepted the lungs and the case worker notified me that they would need to double check my antibodies to make sure they are an exact match and would be calling be back in within the next 20 minutes so i had to get my care team and belongings together to get on the road.  Well... of course this is the one night my husband and his nephew were well into celebrating the holiday already as I was upstairs falling asleep. I'm pretty sure my face said it all when i came downstairs with.. "holy shit guys.... I got the call!!! I'm going to get lungs.... like NOW" sobered them up a bit ;).  I immediately jumped in the shower and grabbed my bag while my husband called my parents across the street to let them know its GO TIME. John helped me grab all my last minute stuff while my nephew packed an ridiculous amount of oxygen into the car in a frenzy.  After the initial shock of getting the call from upenn just a week after listing... i was eerily calm about the whole thing.  I wasn't scared but i wasn't excited either..just kind of indifferent. It was a weird feeling. Looking back i think i was protecting myself from getting too excited because i know that nothing is ever really "GO" until i'm in the operating room. 

We got to the hospital in record time, 2.5hrs with no traffic. It was a smooth admission in, and everyone is waiting for you with these hopeful smiles and greetings as you go up into the room. There were about 5 nurses quickly getting vitals, blood drawn, and getting us all comfortable in my room for a few hrs until they heard from the surgeons and doctors from the operating room.  After a few hrs of laying down trying to sleep... which i didn't at all... they said everyone is ready for me downstairs. I was wheeled into pre-op with no one around in the middle of the night (it was a little spooky but nice because we had the whole place to ourselves)  where we met with the anesthesiologist. She placed an IV line and discussed everything from start to finish from the second i am wheeled into the operating room. Everything would take place really fast to minimize the amount of time the lungs are outside of the body so they like to explain things in pre-op to make patients comfortable.  This is where I started to feel like... "OK this is real... I'm going into surgery and my life is going to change forever". I started to feel the excitement and hope of taking a deep breath for the first time in my life. I started to really feel like this was my time.  Well... it wasn't. After about 45 min, the anesthesiologist came back out and the look on his face said it all. I tried to listen to exactly why they weren't healthy enough, but honestly the voices in my head were blurring out whatever medical terminology he was using as I rationalized to myself that "it just wasn't meant to be" and "third times the charm" and a bunch of other cliche mantras that I could think of to keep myself from getting upset.  After a very long night we were sent back to the room to be officially discharged and sent home to spend the holidays with the rest of our family.

But like everything in life, we have some positives from this experience. Now we know exactly where to go, the best route without traffic and how to check in and park for next time (if the call comes from penn). All of us now have RE-packed our transplant bag with items that we realized we forgot (hairbrush, chapstick, softer tissues- haha) It is also promising to know that I am high enough on the list finally to start getting calls. But since the dry run I have found myself ACTIVELY WAITING for my phone to ring at times... which is the worst!! so my goal now is to get back to actively LIVING but just making sure my phone is charged and on me at all times. Hopefully I can find a balance somewhere in my mind. I recently got an amazing gift from my brother of a charm with St. Bernadette on it (the patron saint of the sick)  Neither of us are very religious but I've read about her and strongly believe in what she stood for, so i'll leave you with this....

"St. Bernadette teaches us that suffering gives us an opportunity to go in one of two directions: bitter or better."

 

I choose better. 

 

XOXO, Salty  

 

 

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