Wonder Woman, Vol. 5 — Lung Story Short...

I realize that I'm like three weeks behind on our story and journey. Apologies that I'm not up to date. It's hard to sit down and knock out blog post after blog post in this new post double lung transplant life. I feel like we're always doing something or going somewhere to some appointment. If we're at home, it's an alarm going off for ivs or pills or to have Rima cough. We try to go on walks 2-3 times a day. In between all of this is getting meals together or cleaning and laundry. When I do have a few minutes to sit down and relax, no offense but writing about the last month is far from my mind. I'm doing my best so bare with me. I'll try to get a few days into one post to try to play catch up.

Tuesday May 23rd, was bronch day for Rima. They were going to look down into her lungs to make sure the area where the new ones were connected looked good. They were also going to take some samples and see if they cultured anything. We went down for the procedure around 10am. Rima was slightly sedated for the bronch. After, she told me she hated every minute of it, I would also! We were downstairs for about two hours. After we got back to her room the PA from the surgical team came by and told us that one of her chest tubes would be able to come out that day! Yay!!! He came by at 3pm and took out her left bottom chest tube! She also got her back catheters out, the ON-Q ball for pain!

Rima had her first AFib (Atrial Fibrillation) episode that evening, right before I was planning to leave. AFib is when you experience quivering or irregular heartbeats that can lead to blood clots, stroke, heart failure and other heart-related complications. It was around 8pm at night and Rima and I were in the middle of a conversation when suddenly she sat up in bed and her heart monitor on the screen started to beep aggressively. It was showing that her heart rate was at 190 - 220, it was bouncing between those high numbers. She instructed me to go grab her nurse or anyone. I ran into the hall and wrangled some assistance. Some nurses came in and assessed the situation. They began to get some medicine in the room, metoprolol. They talked Rima through some techniques to try to push herself out of AFib. They told her to bare down and kinda squeeze her whole body. She did this a few times and then went from a sitting position to a flat one and then suddenly she got herself out of AFib. This is great, they said that she was able to get herself out of it.

Apparently 50% of post transplant patients experience AFib. This is due to a few things: all the stress on your body with the trauma of the surgery, the chest tubes specifically the pericardial tube and your body getting use to all the new anti-rejections medications. The chances of her going into AFib again were very high they said and to expect it. Well cool, great, another thing to add to our list to watch out for. Rima had to basically kick me out of her room because I did not want to leave her that night. She demanded I go home and sleep because I looked tired...yeah no shit I looked like poop. I had barely slept since we got the call. One of the doctors that day even mentioned to me that I looked worse than Rima who had just went through a major surgery...cool story bro. She also walked 600 ft around 4pm and then 300ft around 7pm!

Wednesday May 24th, Rima was in a silly mood, which was great considering her eventful episode the night before. Eric her PT homie brought her some compression socks the day before and Rima requested that I give them a bit of life. I drew some faces on them and Rima dubbed them François and Stinky Pete. She went to the PT room during her work out time and did some steps and the NU step machine her o2 levels while working out were at 92%, woot woot!!!. She also walked for 600ft! For lunch we got some Punch Pizza, our mom agreed with us that it was great! In the afternoon my mom and I washed Rima's hair. The nurses gave us an inflatable bed basin for hair washing. We had some serious Salon De'Laima in her hospital room. She had, had her hair in french braids since the surgery, can you say dirty dirty bird....

She was hot, so we were cooling her off.

pizza smiles, first real solid food since before surgery

At around 4:30pm she went into a small Afib episode, we were in the PT room when this happened. I ran back to the nurses' station while Eric and my mom got Rima together and wheeled her back to her room. She kicked herself out of it again, which was really good. They did start her on a metoprolol iv drip anyways, to prevent more AFib, or at least try to. Like the trooper she is she went on a third walk of the day in the evening before my mom and I went, she walked 700ft!

Thursday May 25th, when I arrived to Rima's room at about 8am I found a very sleepy and exhausted noodle (my nickname for Rima). She had a terrible night of sleep she said, the worst one yet. The nutritionist came in and talked to us about our plan for Rima's nutritional needs once we got home. We needed to really ramp up her protein intake like super ramp it up. Also, she needed to hydrate more. More proteins and more water, check and check. The doctors had her results back from her bronch from the other day. The area where the new lungs were attached looked good. The lungs were looking good. She did culture pseudomonas, which was a "bug" in her old lungs. This did not mean her lungs were infected again just that they were colonized. Imagine having the chickenpox or say mono. Once you have had it, it's still in your body and could come back but not necessarily. So that was basically what was going on with the pseudomonas that they found. Yes, they had taken out her old lungs which were full with it but it was still in her sinuses and airways, which connect to the lungs, so it makes sense that her new lungs would get colonized with it. Nothing to worry about yet they said...

At around 4:30 Eric came by for her afternoon PT session. It was so nice outside and Rima was feeling loads better than she did that morning. "I want to go outside!" she said. Rima got her wish. Eric, Rima, me and her iv pole and two chest tube boxes emerged from the hospital into the courtyard in the bright afternoon summer sun. It was so nice to see her outside of the hospital hallways. We walked around for a bit and then went back to her room. Early that evening she went into an AFib episode for about 7 seconds. Then a few minutes later for about two minutes. We were hoping that the metoprolol would fully kick in and the AFib episodes would be a thing of the past the next day.

That afternoon Rima and I had one of the head transplant pharmacists come by her room and have a transplant med class with us. He went over all the drugs she would be on after she went home and for the rest of her life. He went over the side effects of all the drugs, there are a lot. We asked him a bunch of questions, naturally, we are known as the question queens here. He gave us a blood pressure machine and a new thermometer. Since for the next year twice a day we have to take Rima's vitals; temperature, blood pressure and weight. He also gave us a very large pill box holder. So we could keep all her new "candies" very well organized.

Friday May 26th, today was going to be a very special day for us. Our amazingly wonderful transplant coordinator worked some serious magic for us. Since our transplant evaluation Rima has asked and asked again to be able to hold her old lungs once she gets the transplant. Our transplant coordinator said she would do her best to make that a reality but might not be able to. Some transplant centers do this often, let patients hold and see their old lungs, some centers don't do this. They may not do it for a number of reasons. Apparently here at the U of M, it was very uncommon aka not offered. I guess the squeaky wheel does get the oil or at least in this case. Not only did Rima get a lot of photos taken of her open chest cavity and operation during her transplant but now she would be able to see and hold her old lungs.

looks like an alien, sliced up for science

That morning when my mom and I arrived to Rima's room we found her laying in bed and exhausted. Another bad night of sleep. At around 11am the lung parade made its way across the hospital campus to the pathology dept. The lung parade consisted of: Rima, me, our mom, Eric from PT, Megan our transplant coordinator, one of Rima's NP's, and Rima's nurse. Seeing some old CF lungs was the hot ticket that day, haha. The seven of us looked like a small army all walking behind Rima being pushed in her chariot wheelchair. We arrived to the pathology dept and all got gowned and gloved up. Inside the room we all made a semi-circle around the table that Rima's left lung was located on. Rima was bursting with excitement.

It was definitely one of the coolest things I've been privileged to be a part of and witness. The pathologist talked to us about her lung and explained certain parts of it and anything important with it, like an abscess or why they were cut the way they were. Rima then got to hold her lung. Wow just wow. She was holding the left lung. Part of her. A piece of who she is. This organ that was inside her for the last twenty-seven and a half years. This organ that caused her so many issues, this organ that served her as well as it could have. This organ that the majority of us take for granted. This organ that a lot of us use and abuse. This organ that she did not take for granted. Her body was home to a new pair of lungs, to a donors pair, a new chapter. A chapter that meant new life, a second chance that again not most people get.

woooooooowwwwwoooowwwww, sliced up to study better

Standing there in that room with Rima and her old lung, seeing her team look in amazement and curiosity at all the colors, cuts and spots on the lung brought some serious shivers up and down my spine. I also got to hold her lung. It was heavy, kinda hard but soft. I was holding a part of my little sister and she was alive and well next to me. Wow, just wow. Thank you modern medicine and modern science! I took an abundance of photos and videos but I mean so would all of you. This was a one time experience and I was going to document it all.

After getting back to her room Eric tried out a TENS Unit (Transcutaneous Electrical Nerve Stimulation) on Rima's back to help her muscle pain and discomfort. It was pretty amusing watching Rima's reactions to all the shocks. In the late afternoon before going to the PT room Rima saw that the room next to hers was vacant and being cleaned. It was a large double room and much much much bigger than the one she was currently inhabiting. She asked her nurse if there was anyway she could be moved into the larger room. We were told most likely not and that it was being cleaned for someone else. We went to the PT room and Rima did some biking and then some steps. When we got back to her room we found all our stuff moved into the larger room.

In the sixteen minutes that we were gone the nursing staff worked together and moved all our stuff from Rima's small single room to the large double room. We were so surprised. This was such an amazingly sweet gesture. They could have totally not given Rima the larger room. They also did not have to move all the stuff from her room to the new one, instead of waiting for us to get back and do it ourselves they took it upon themselves, even with their insanely busy schedules. What an amazing staff!!! Her new room was HUGE!!! There was so so much room! What an amazing day!

Saturday May 27th, was a great day for Rima physically. She still was in some pain and discomfort but she kicked some serious PT butt. In the morning she did interval training with one of our PT homies. Jacob, had her walk as fast as she could for about 30 - 60 seconds outside. We found a secluded side alley by the courtyard and made that her track. That afternoon she took a well deserved nap and then I got her some yummy beef and broccoli for lunch. She was finally on the solid food train, woot woot! That afternoon Rima and I went for her second walk of the day outside again. We did interval training again and she walked super fast for a minute, GO RIMA GO! Then before my mom and I left for the night we went on another walk around the hospital and Rima walked up and down some inclines. Can't stop, won't stop!