The week after Rima got home from the hospital was an awesome one! She was off oxygen! No more leash around the house! When we would leave the house we didn't have to worry about refilling her portable oxygen. Rima didn't have to walk around with a backpack attached to her at all times, looking like she was about to go climb a mountain or something. Alisha was still in town for a few days and so was our mom. We went out for walks a few times per a day to keep her legs moving and to try to have her lungs open up more. There was still some air in-between the lung and the chest cavity that would close eventually. Exercise and breathing deeply helps it go away faster.
She did have her first follow up appointment when both our mom and Alisha were in town. Rima had quite the parade following her around clinic that day. She had her first PFT test that day, they call it the Loop test post transplant, not sure why we need to ask again. Her PFTs were at 57% which was huge, since they were at 16% pre-transplant. We were so happy! It also happened to be national doughnut day, so naturally we got doughnuts after the clinic appointment. We also took our visitors to our favorite kombucha spot, Gyst for some amazingly delicious buch. Alisha departed us on Saturday but not before she and Rima had a pizza-off the night before she left. My mom and I were the judges. It was a hard decision, but Alisha won. She had more cheese, so for me that took the pizza.
Our mom left the following Tuesday. She had a very early flight, we dropped her off and then went to watch the sunrise over Lake Calhoun before Rima's second follow up appointment. The doctors said her x-rays kept looking better and better each time. Her lungs were expanding a bit more each day and looking clearer every x-ray. Baby steps forward! For the following few days we didn't really do too much. The doctors told us to basically not over due it and to avoid germs. This meant avoiding large groups of people. If we were to go out to restaurants to go on off hours and to eat out on the patio. Rima's immune system is and will be the lowest it's ever been for the first year. After that it increases a little but still it's not like a normal person, say me or some of you.
We were in a new world of being bug and germ aware. Not touching door handles if possible. Washing our hands allllllllll the time. Wiping down tables and chairs with disinfectant before Rima sat down. Wiping down menus and not going to little holes in the wall. No more sushi. No more alcohol. No seafood for six months. No more gardening. No more indoor plants. No more sharing food or drinks. Washing the tops of canned goods before opening them. Making sure all fruits and veggies are washed. No more pomegranate (or bony lettuce as Rima calls it). No more unpasteurized cheese. Wearing a mask out in public. Avoiding areas where people are mowing the grass. Wearing a mask if it got windy or near a dusty area. Avoiding construction sites.
There are a lot of things Rima can't do anymore or needs to avoid. But they don't overshadow all the things she can do now! She can breathe WITHOUT OXYGEN. She can go up and down the stairs like it's a piece of cake. She can eventually run! She can walk fast! She has way more energy now! She was burning like 2,000 calories a day on just the energy needed to breathe so naturally she was always tired! Now that she can breathe she has so much more energy! She does not cough anymore! She will still need to make herself cough to make sure things move around if needed. But with the new lungs the nerve endings are not attached so that natural reflex is no longer there. She'll eventually be able to hike up trails and then hike up a mountain back in Colorado!
The possibilities are endless. It's incredible what happened. It's amazing that Rima is recovering so well. Every day I get her morning meds ready at 8am with whatever breakfast she requested the night before. Sometimes oatmeal or a piece of toast with peanut butter. I walk into her room and she has a smile on her face and is ready to be silly with me at 8am. Pre-transplant life this would not have happened. She has always had a good temperament and was almost always in a good mood and happy. But now it's on a totally new level. At times I think to myself, "is she drunk right now? She's sooo happy and silly!" I have no words to express how happy and thankful I am, we are.