The "yes" statements
It's been almost a month since I last posted. That should be a good indication that a lot of positive things are going on. Every time I think I have a minute to write, something always comes up, like an activity with Rima and her two new lungs. This past month Rima has been easing into her post transplant life and routine. We're getting used to the things she can't do and they no longer stick out to us as issues. Before the transplant we focused on all the stuff she would no longer be able to do. They held an unpleasant focus, like poor florescent lighting. We got a bit too hung up on all the no's. But now they don't really bother us at all.
We're pretty good with finding loopholes and being creative with things that we can't do. For instance, no more houseplants for Rima because of the dirt. Dirt houses tons of fungi and mold, a major one is aspergillus. If she got this the doctors could treat it but it would cause big problems. So to avoid it doctors say no indoor plants. We found a loophole; air plants don't need dirt to survive, they just need to be watered once in a while and misted inbetween. Recently we were told that she's allowed to have fresh cut flowers in the house. Previously we were told that she would not be allowed to have fresh cut flowers in the house for at least a year or longer. The contradictory information we've been getting is enough to make you want to spit.
We were also told that she could have houseplants inside the house but not be the one to water them or repot them or go digging around in the dirt or be around when it is happening. It's hard to decide who to listen to in cases like these. We have had medical staff members on the same team tell us different things. Some doctors air on the more cautious side, some are more realistic in understanding that as long as dirt's not getting kicked up she's fine around houseplants. So now we're at a crossroads with our decision on whom to listen to. We have not yet brought fresh cut flowers into the house or potted plants. After over a year of having no this, no that, no flowers, no plants pushed in our heads these new "yes" statements have us scratching our heads, but in a good way.
Another "yes" statement we received not too long ago was yes to Rima being allowed to float on a river and lake. We were told before the transplant that lakes and rivers would be off limits for a long time. But I guess everything is subject to change. As long as the river is clean and Rima was not dunking her head in or drinking the water she would be fine. Same with the lake. It's very refreshing having all these "yes" statements coming our way. Another one that has made its way into our life is the one that we thought Rima could not be left alone for at least three months. I'm sure this stands true for lots of post transplant patients but we recently got the okay from the doctors that Rima was not going to "die" if left alone for several hours.
This is good because we'll be going back to Denver soon and she'll be alone at times there, either at home or running around doing things. Having the trust of her medical team believing in her capability to take care of herself properly is really tremendous. They know how strong she is and how capable she is. They also are very aware at how well she can take care of herself and follow a drug routine. All of these "yes" statements have taken us by surprise. We were like "wait, what?!" amazing when you hear yes when you expect a no. It just goes to show you that even when you think life will be a certain way, the winds of change come and surprise you.
Rima has even gotten to the point of where she's able to help me out around the house. For the last year or so she's been so drained and low energy that I've done everything around the house; cleaning, laundry, cooking, driving, shopping, etc. Cleaning is still off limits, because it kicks up dirt, mold, and other gross things that she should not be breathing in. But she has started to do some dishes and make some of her own meals. This has been great for me since it's taken some things off my plate. She also can drive now! She says she finally feels like and adult again, haha.
In mid July we had two of our best friends come visit us, Devin and Olivia. Devin and I go way back to my L.A. days. We share the same birthday coincidentally; she's four hours older than me. Olivia is Rima's best friend from Boston and has come to visit her here in Minneapolis twice before. The girls got in right around the same time and stayed for a long weekend. It was such a change from the last time Olivia came to visit us. Rima was still pre-transplant at that point and had very low energy. She was also not very mobile at all and the wheelchair took her almost anywhere we wanted to go. This time around it was quite the 180.
We had an amazing time with both our friends; we wish they both could have stayed longer. A couple days after the ladies took off Rima had her second bronchoscopy. She said it was fine. She was sedated but not enough to not know what was going on. They took about twelve biopsies and we would find out the results if they found anything a few days later. Over the next week we tried to do a lot of outdoor activities. Walks and we even rented bikes and rode around Lake Calhoun. One night we watched and listened to live Jazz in one of the city parks, of course we had a picnic during the concert.
Saturday mornings we have a new tradition, we meaning at least for Rima. Going to a farmers market and getting fresh local produce. We have tried a few different ones throughout the city and have landed on our favorite farmers market in Saint Paul. Don't worry Rima wears her mask the whole time. A couple Sunday's ago we decided to take the doctors up on one of their "yes" statements. We went tubing on a river with two of our good friends Kim and Tessie. It was such a fun day. Rima had a blast!
Several days after Rima's bronchoscopy we had a clinic appointment. During this appointment we found out that some of Rima's biopsies grew some very, and I mean very unusual fungus. Curvularia, we were told that it could just be a contaminant from the lab and her new lungs could not be actually growing it. But, they also could. We met with a team member from the infectious disease department a few days later to get some clarity on the subject. They did not seem too concerned with the results. Rima was and is doing great. No shortness of breath or fevers or any major changes in the negative department. If she were experiencing any negative changes then they would be concerned that the fungus was the culprit.
It was explained to us that yes, Rima had cultured a rare fungus; one that the U of M had never really treated, but she had a common problem. In that the majority of post-transplant patients culture some sort of fungus eventually. It can lay dormant in the lungs forever or a while. It all depends on the strain. The difference between colonization and infection; infection bad and colonization means things are there but are not doing anything. They said if she does have the fungus she could have picked it up anywhere outside. They did a CAT Scan to see if it would show the fungus spreading through her lungs. The scans came back negative, which was great. They've decided not to treat her at the moment. Rima's next bronchoscopy is in September so if it shows up again then the team will be able to better assess if they should start treating her with drugs to get rid of the fungus. Cross your fingers it's all kosher!