Wonder Woman Vol. 2 — Lung Story Short...

The doctors told me that they would round at around 8am in the morning to Rima's room in the ICU. I had another pretty sleepless night, again. I called the ICU in the early hours of the morning to check on Rima. All was well with her but that didn't ease sleep for me. Finally, at around 5am I surrendered to the day and decided that if I was unable to sleep I might as well be productive instead of tossing and turning. Our mom was flying in the next morning so the house needed to be clean. Yes, I'm one of those people who like to live in a very clean and orderly house and always clean and tidy up before any guests. I was going to take out my frustrations on the house and get some clarity or zen while cleaning. I left the house spotless and got Rima's room ready for my mom. I had left with plenty of time to spare to arrive in time for the morning doctors round but a train from Canada had other plans for me. I was stuck at a train crossing for at least twenty minutes.

If you had been in the car in front, next to, or behind me you would have thought I was crazy. The emotional roller coaster I was taken on because my timing could not have been more "perfect" was ridiculous. My voice was hoarse for at least an hour from yelling at the train from my car with windows rolled all the way up. I probably looked like I saw singing some heavy metal song or something. Lots of banging on the steering wheel in frustration and hand waving and jabbing in the direction of this massive time suck from Canada. By the time I got to the hospital and ran over to the ICU I had lost at least thirty minutes. I ran into Rima's ICU room just at the end of the doctors finishing up with her. The whole team turned around as I literally ran into the room saying "Holy shit, I'm so sorry, a damn train....ugh....what did I miss...?" Luckily this team of doctors are pretty familiar with Rima and myself and our, ahhh loose choice of certain words in the English language. We use the excuse that we're from Boston (massholes) hence all the sailor language. We've come to think that they get a kick out of us and we amuse the team. Nothing like a little spice in their daily routine. Or two women who make jokes and swear to make you appreciate your duller patients.

I got a recap of what I missed from the team. I was still standing in the middle of the room with bags on my arms trying to catch my breath. Trying to retain everything that was being told to me. Trying not to realize how exhausted I was. Trying not to wonder about how I could plan the demise of that stupid train from Canada. They told me that Rima would be moved up to the 6th floor. This was huge news! They wanted her to walk today to ensure she was able to move around before the move happened. They told me everything was looking good, she was doing great. Pain management was hard and they were going to do their best to help her get ahead of the pain. But they also didn't want to drug her up to the point that she would pass out and not be able to move. It's a very fine line, pain management post double lung transplant. In my research I've read that some people say they felt zero pain and barely remembered the first few days, others had incredible pain and issues controlling it and remembered it all. It was explained to me that they want to get her on a 2-4 on a 0-10 pain scale. 0 being feels nothing and 10 being the worst.

They also told me that if all went well in the next couple hours they would have her neck wires aka the swan and one arterial vain iv removed. This was great news! I forgot to mention in yesterday post that I spoke to the pain management team about her back catheters. She had two back catheters inserted on either side of her spine. Sort of like a spinal tap but less invasive. They were administering pain drugs through the back catheters. It's called ON-Q. The catheters are very specifically placed in certain parts of the back to be woven through certain nerves that control feeling in different parts of the body. Her two back catheters were strategically inserted into nerves that connected to where her incision site was and the lower lungs. This was to ease pain in that area. Smart idea since she just got cut open all up in that area. They were giving her ON-Q balls aka pain drugs every 12 hours. The team who did this procedure told me that they had a hard time inserting the catheters in her back. Since it's such a specific area and her area of the back for those nerves is very small they tried and failed a few times. They finally got it in the right place but told me that she would most likely be sore for a few days.

Apparently sore is the code word for back pain. Once the doctors left and I got to see Rima and ask her how her night went she explained that her back was in a lot of pain. More than her incision site or anything else. The doctors said it was most likely due to the ON-Q catheters, trial and error and how she was positioned for the surgery. Flat on a table and arms spread wide. Yeah, my back would also be in knots! Even with all her pain Rima sucked it up for an update photo while smiling and holding her lung pillow up. She wanted a different photo than the day before. So her laying in bed and holding it up was different enough...haha. It was so cute hearing her reasoning on this, who could argue?!

At around 10:30am an ICU nurse came in to take out her neck wires or the swan as they call it. I was so happy they were taking it out, Rima had only been able to lay her head on her left side since this huge cumbersome tube was sticking out of her neck on the right side. The nurse had to cut a couple stitches that were holding it in place. He had her do a couple of test breathing exercises before he pulled it out. When he did it looked like a yellow worm coming out of her neck. Cooooolllll! After the swan was out he moved on to her arterial line or arterial iv on her inner left wrist. He had to cut a couple stitches that were holding it in place and then pulled it out. Rima was now a little less tangled.

close up of the swan and stitches before it was pulled out

Shortly after Rima was a few wires free PT came in. Eric our favorite was about to make Rima stand up and walk down the ICU hallway. This was a prerequisite of being able to go up to the 6th floor and getting out of the ICU. Even with all her pain, discomfort and exhaustion Rima was up for the challenge. The next fifteen minutes consisted of the tubes, wires and machine rodeo. They had to get a wheelchair to not only have Rima hold on to while walking but to use the seat as a holding area for all her medical boxes and machines. The amount of tangles that were existing around Rima would have driven anyone with any OCD up a wall.

Just to give you an idea of what was coming out of Rima: five chest tubes connected to 4 fluid collection boxes, two back catheters connected to an ON-Q ball, nasal cannula for oxygen, right wrist iv, left wrist iv, urinary catheter, her port iv, finger oximeter, and five leeds for a cardiac monitor. Is your head spinning yet? Well, mine was. After untwisting and untangling multiple wires and tubes they had Rima ready to walk. They put a mask on her and she was ready. Oh, I should probably mention that her eyes were basically closed this whole time. This was not because she was sleeping. It was due to her face being swollen especially her eyelids, the anesthesia meds still wearing off and all the pain drugs she was also on. She basically had her eyes shut the whole walk. Eric kept telling her "open your eyes, look at the world, look at where you're walking" Rima would slightly open one or two at a time but for only a short period of time.

She walked down the ICU hallway and then did a U-turn and walked back to her room. In total, she walked 300ft! This was amazing! Not even 48 hours out of surgery and she had not only gotten her breathing tube out but also walked 300ft! A lot of the ICU staff watched as Rima set her own bar pretty high. Some even clapped! It was such a gift to see this happening. Eric said this was a rarity and that he was very, very impressed. After her walk they set her up in a chair and we awaited the news to when we would be able to move upstairs to her room. While sitting in the chair she even did her two breathing exercises and did some coughing even though it hurt her a lot.

In first place it's Rima, charging forward!

you can't take her anywhere, she does not travel light, hahah

Coughing is something all of us who have our original lungs do when we need to get something out of our lungs or airways. It's a reaction, a feeling. Like breathing you don't really have to think about it. But, when you go through a double lung transplant and get a new set of lungs this changes. Science is not at the point where they can connect all those hundreds and thousands of nerve endings. So the instinct to cough is no longer there. To cough Rima has to make herself do it. For the rest of her life and anyone who has gone through a lung transplant or will, coughing will have to become a part of their daily routine. The pink lung pillow that was given to her is to be used as a hugging device to push against her incisions when she coughs so nothing pops open or is strained.

While we were waiting for her room to be set x-ray came by and took some images of her new lungs. This was going to happen every day that she was going to be in the hospital. To make sure her lungs were looking good and nothing bad was going on. At around 2pm they told us her room was ready. The tube and wire rodeo began again trying to get all her machines and devices on her IV pool and wheelchair for transport. It was quite a ridiculous process and some things got pulled or tugged in the wrong direction, which did not make Rima happy. The ever-polite patient she is she kept her opinions to herself and occasionally threw shade in a nurse's direction but only when they had their back turned to her. Even with her eyes barely open I could see the annoyance and anger when something got pulled in the wrong way.

Finally after getting her upstairs which was sort of a mess with all the tubes and wires, she was in her recovery room out of the ICU! Her pain was pretty bad at this point. Her room was a hustle and bustle of nurses and medical staff for the next hour or so. After the flurry of people departed Rima expressed to her nurse how much pain she was in, 9 on the pain scale. Her nurse immediately thought of an action plan to get her pain management under control. Rima and I both immediately took to her after this.

Trying to get Rima comfortable was the mission and in the end a winless battle. I was at her side for the rest of the day and evening trying to help her ease her discomfort in anyway I could. Adjusting her pillows numerous times, folding small wash clothes or towels under her back and neck and arms. Moving those around countless times. Answering questions for her when I knew the answer and I could tell she did not want to talk. Trying to move conversations out to the hall when applicable so to give her some peace and quiet may it have been for only a few minutes. I felt so helpless at times. Seeing her face express pain and discomfort to a level I've never seen before on her. My heart breaking at what she was going through. The only thought that would make it "okay" was that she had her new lungs. She got her new lungs. "Hold your shit together beanzy" I would keep telling myself.

I left late that evening. On the drive home my mind decided to play out the emotions of the day. I knew this would probably be the last time I was alone, alone for a while so I was trying to savor it before family and friends descended on us. This might be the last time I get to jam out to loud 90's hip-hop on the ride home. Tupac and Biggie Smalls make a great soundtrack to end days like this. I was so proud of Rima. So proud of her strength, willpower, attitude, humor, tenacity and purpose. She was in the thick of pain and discomfort but was pushing through it because she knew the end goal and she knew herself, she's a fighter and a winner. Nothing was going to break her or stop her from achieving this goal of having a successful double lung transplant and recovery.

Rima is going to keep on kicking butt and taking names all the way to her first 5k. Rima the ever strong, ever inspiring being. A true Wonder Woman and not the fictional short skirt cartoon one, who runs around in heels and always has perfect hair; created by a man with a skewed perception of what a "strong" woman is. Think again buddy. A true Wonder Woman has chest tubes, a massive scar under the chest, unwavering courage and self-discipline. She wears a hospital gown and pushes herself to walk 300ft not even 48 hours after a life changing surgery. She does not wear barely there skin tight clothing and a pushup metal corset. I know a REAL Wonder Woman and her super powers are stronger than any magical rope. Wonder Woman is my sister and all the other woman who fight CF and go through a transplant. These are humans who put life into perspective, who inspire, who fight, who win, who adapt, who are wondrous in every sense of the word. Put that in your comic book DC Comics and then we can have a real conversation about Wonder Woman.

To be continued...