No, I don't want to wake up, no. Tuesday morning came way too fast. Rima had been up a little before me doing all her nebulizers, which take just over an hour. Poor kid can never just give herself 15 minutes to get ready. The first appointment of the day was her lung perfusion appointment. She needed to get an IV placed in her arm for the injection. This test involved her getting injected with radioactive particles that entered her blood stream and measureed the air and blood flow in her lungs. The radioactive material is called Technetium(99mTc) Albium Aggregated. The images show the doctors what parts of her lungs are not getting enough or any airflow. The injection came to Rima in a lead container because it should not be exposed to others. Rima came out of the appointment glowing lime green. Lucky it's one of her favorite colors. Just kidding.....
The second appointment was an echocardiogram with bubble study. This was when they inject her with bubbles, to see if there was a tiny hole between the upper chambers of her heart, known as a PFO. The echocardiogram consisted of her having to wear a gown and then the technician used an ultra sound machine to check her heart and take pictures from different angles. Rima said she was a bit sticky after.
Third appointment was a CT of the chest and sinuses. CT stands for Cat Scan. This was pretty simple compared to the first two appointments. she just laid on a flat surface and they took images of her chest and sinuses to look for any abnormalities. She came out of the room and the first thing that came out of her mouth was "I'm radioactive! Be careful!" With all the X-rays from yesterday and all three test from the morning I would not have been surprised if she developed some sort of super power. If we get to pick, can it either be self healing or flight?
Our fourth appointment of the day was a lung transplant class. We were in a conference room with our transplant coordinator Megan, who was leading the class. There were two other groups (two people per a group, one patient and one caregiver) in this class who were also going through the transplant evaluation. In this close to two our affair we went over the whole process of a lung transplant beginning to end. We were give a binder with every single piece of information we could need. Rima and I had already done hours and hours of research on this so a lot of the information was a review for us but it was welcomed. I don't know if it's just us or our personality type but we seemed to be the only ones who had done our "homework". It was very interesting hearing the questions and concerns of the other two groups in the class, who had clearly not read any information given to them prior to this. **eye rolls*
What hit home for us, even though we already knew about it, was the whole not being left alone for three months after part. Just having it repeated to us again and again made the both of us anxious. Yes, in the grand scheme of things three months is nothing, but still.... She can't really go out in public which makes sense because of germs and she will be super susceptible to getting sick quickly. Going to the movies is a hard no. Grocery shopping hard no. Restaurants maybe...but with a mask. Rima and I have already been spitballing ideas to keep ourselves busy during this time. A few on the table are knitting a onesie (haha, jk), learning guitar, learning a third language, and chess. Her main and only concern is to rest, eat and sleep. I'm in charge of the rest. Family and friends will come and help during this time obviously, but I'm going to be in charge. Hello spread sheets and charts!
For Rima three things really annoyed/bugged her. The no plant rule for the first year and most likely after. She loves to have plants in the house. She is a plant collector. These are her babies. Due to the possible mold on the plants or in the dirt, transplant patients are told to get rid of any live plants or flowers in their homes. The second is no tattoos. Rima, if you don't already know this, loves tattoos and has a bunch. Some quite large. Before the transplant and after you're not allowed to get any because your body could create antigens that were not in your body before, which could fight off the new lungs. We looked at each other after this was expressed, Rima had a super frown face on. She also might have stomped a little. The third is being restrained after the surgery because of the breathing tube in her mouth. This is so that when she wakes up and her immediate response is to pull it out of her throat and mouth, she wont be able to. Being strapped down and not able to move is a scary thought but she will be so drugged up that she might only be awake for a few minutes and then go back to sleep. The probability of her remembering the first 48 hours is very slim.
After the transplant class we met with her respiratory therapist Amy, huge fans of her also! She went over Rima's vest therapy and nebulizer routine. Rima had received a new vest machine called the Afflovest. We had been led to believe that this was the new and improved way of giving CF patients the best chest physical therapy. Wrong!! Amy, informed us that the Afflovest was not aggressive enough. I knew it! When Rima used it the first time I compared it to the massage chairs you sit on while getting a pedicure at the nail salon. Clearly I was correct, I love when that happens! The machine called The Vest which was created at MNU is the "go to" of chest therapy here at MNU. The way they strongly suggest using it is at either a high frequency and medium pressure or high pressure and low frequency for an interval of 5 minutes each. It's aggressive especially if you're use to something a bit less hard on the body but the results are quite impressive. Many CF's patients FEV1's go up 5%- 10%. Which is a huge deal, especially if you're on the road to a lung transplant. Amy showed us how to use it their way.
We also discussed her nebulizer routine. Amy, was shocked to hear that it takes Rima 1.5 hours to 2 hours, morning and night to do all her nebs. Rima has needed a new nebulizer machine for quite sometime but of course the never ending problem of her two insurance companies have made it difficult to get one. Once she gets a new one her time will be cut in half. I would love to smack the insurance companies in the face for each hardship or roadblock they have created for her. I think heads would roll off with all the slaps necessary to make things equal in my book. I digress. Amy, also informed us that she needs to do the vest therapy at the same time as her nebs. Doing nebs while being shaken allows the moisture and medication reach deeper into her lungs which makes them work better. She also highly suggested that she do this combination for 30 minutes at a time 3-4 times a day. Rima, was not a happy camper. I think the emoji with no mouth expression would be the one I would use to describe her facial expression. Wide eyes and all.
We then met with Megan her transplant coordinator for a hot second to go over her heart cath procedure for Wednesday. She went over what would happen and to not eat before. Rima had already gotten one before so she was not very concerned. This girl is one tough cookie. I'm seriously impressed how she is handling this whole situation and all her appointments. With humor and grace she has moved through all these steps so far and I doubt that she will continue in any other manner. With all the medication she remembers and is able to dictate on the spot to doctors is insane. Also, all the timelines of dates and procedures she just has in the back of her head at any given time is super impressive. I forget what years I moved to different cities and it takes me at least 4 minutes to figure it out. Shame on me....shame on me.
The last appointment of the day was a pulmonary function test (PFTs) as well as other tests measuring lung volumes and a 6 minute walk test. The walk test is to see how far she can walk in 6 minutes while keeping track of her o2. Oxygen can drop while walking, the goal is to stay above 90 but 93+ is better. I stayed in the waiting room while Rima went to these to appointments. While waiting for her, Amy came back to find me. We had asked her a few questions like proper cleaning procedures for her nebs and other items that touch her mouth. She gave me some information about proper sterilization, homework for later. She also gave me a bunch of restaurant and bar suggestions for future visits. If you have not heard of it (we had not till we arrived) there is a thing called Minnesota nice and boy is it true!
We left the hospital and drove to an area called Uptown. Super cute houses and a nice area full of shops and restaurants. It reminded me of the Lincoln Park neighborhood of Chicago. We got Rima a working iPhone, yay! (the touch on her screen was shitting the bed). We then had a late bite to eat at a burger joint, sharing is caring and we split a burger and fries. When we got back to the Airbnb we were wiped again for the second day in a row. I cooked a late dinner, chicken and green beans! We then watched a movie, now don't make fun of us, our brains were mashed potatoes at this point. We watched Wish Upon a Star...let the judgment flow (yay disney channel). We enjoyed it and then passed out. We would actually be able to sleep in till 9am on Wednesday, yippy!