Check out the below links to learn more about Cystic Fibrosis, organ transplants and how to become and organ donor! 

Cystic Fibrosis Foundation

Transplant info

Become an organ donor

Bossy plants

Bossy plants

Sometimes you don't always get to do what you want. Most people on a daily basis have to go through a rhythmically planned dance that usually repeats itself daily if not weekly; work, errands, obligations, deadlines, etc. At times you have people telling you what to do or not to do. Even if you don't agree with them, say a boss or a supervisor, you have to be "obedient" and follow through with their request. I've been in these shoes plenty of times. More often than not I've disagreed with the request because I knew I could do the task more effectively differently and faster but to do so would be to blatantly disregard their request and put me in a sticky situation. A situation where I would have to explain to them that I might know better, even though they are "above" me in the corporate ladder. Sometimes I got away with it but it depended on my boss at the time. I don't do well being micromanaged. Give me the gist of the job or what should be done and then walk away and watch me work my magic, that's how I work best. 

My work ethic and capability to be light on my feet even if I'm not 100% sure in what I'm doing has helped me immensely in the role I'm playing now as Rima's caregiver. By my standards I've been kicking ass, yes, there's always room for improvement and I try to be better every day. I usually wake up and think well, let's do it this way today and see how that works. Being a caretaker has been a 24/7 job. Job does not seem like the correct word to use here, maybe persona is a better one. My persona as Rima's caregiver has been largely mapped out by her needs medically and personally. When she says jump I ask how high. In many ways, Rima is my boss. When she's hungry I make her food. When she needs something I get it for her. I've become a personal assistant in many ways. I'm her chauffeur, chef, personal shopper, stylist, maid, supply lady, pack mule, nurse, trainer, art critic, kombucha brewer, comedian, wheelchair pusher, picnic partner, activity planner, travel agent, dirt pourer, advocate, show binge partner, etc. You name it I've worn the hat.

I'm only human so of course I have good days and bad days. Some days I get frustrated easily some I don't. Occasionally, I have a dark urge to turn her oxygen off at night to see if she really needs it...JUST KIDDING!!!! Just like a job I have to swallow a lot of my immediate reactions or responses. For example, if I'm eating lunch and watching a stand-up comedy special on Netflix and Rima requests that she needs something or is hungry I press pause and attend to her needs. Usually it's not an immediate ask but I like to fulfill her requests promptly. I'd like to keep my standing as top caregiver of the month. Now sometimes I'd like to just watch a whole comedy special without interruption but I'm on the job, so when the boss calls I answer. Or if I'm in the middle of cleaning and the same deal occurs that she needs something or needs help I press pause on what I'm doing. I'm Rima's employee in many ways, she pays me in jokes, laughter and the occasional smile. 

I've really honed in on reading Rima. I've always been good at reading her since she is my sister, but being able to anticipate her needs before she even knows them, that's been a big victory for me. Now, I don't get these guesses right all the time but when I do it's great. For example, knowing when a nap is on its way or when I should start making her lunch or dinner before she even asks for it, victory lap time! I'm going to toot my own horn here and say that it's been very difficult to get her to gain weight over the last year but holy shit we did it! She is now about 140 - 141 lbs!!!!!!!!!!!!!! Some people may see these numbers on their scale and be upset or get down on themselves, not Rima. We thought getting her to 135lbs would be impossible. The medical staff back in Denver basically told me good luck when I said that was my goal. It used to take her almost a half a year to gain 5lbs and now it's happening in a month! 

There are a lot of factors that go into this but I think a majority of it has to do with my personal chef skills. One of the things they tell you when you're pre-transplant is to try to gain some extra weight as a reserve to help you bounce back after surgery. Having extra "food" storage for your body allows it to heal faster. We're now at the point where the word "maintaining" has come into play with her weight. Not gaining but maintaining, which is a whole new world and concept for Rima. Her whole life it's been about gaining, gaining, gaining, and more gaining. Now that, that word has left her weight category maybe it can make its way into the gaining new lungs category?! 

Going back to the "you don't always get to do what you want" rant, this shook us last Friday. Rima had her regular clinic appointment. She had PFTs and then met with one of her doctors. We were running late that day due to the oxygen company running a bit behind schedule so by the time Rima got to her PFTs she was winded and rushed. Her PFTs reflected this, or at least that's what we thought, the doctor had some "alternative thoughts". She was very concerned that her FEV1 was 15% vs 17% as they were two weeks prior. We tried to explain that Rima was winded because we were late and she was rushing. Also, that allergies due to the spring pollen probably played into it. Ridding on the more cautious side, I can't blame her since she needs to air on that side as her profession dictates; she increased Rima's dosage of prednisone to 30mgs instead of 15mgs. She also instructed us to take it super easy for the next week. Basically to stay at home. Yeah, Rima and I both looked at her as if she had ten heads. She also set up a follow-up appointment for the following week instead of in three weeks, as was planned two weeks prior. 

If her FEV1 does not go up by the follow-up appointment and she still sounds short of breath and wheezy then back to the hospital life she will go... This is a challenge if I've even been gifted one. I love challenges and usually always come out on top. So, even though we may not be happy about laying low for a week and staying at home way more than we would like, we're doing it. I'm listening to her doctor or in this case my secondary boss and following through on the request even though we may not 100% agree with it. After her appointment with her doctor Rima did her six-minute walk test. The six-minute walk test sees how far you can walk within six minutes and this number is used for your UNOS or transplant score. Unfortunately or fortunately depending on how you look at it, Rima was only able to walk about 600 something feet as opposed to 900 something feet that she was able to walk back in January. This increased her score from 41.something to 43.47. Yes, her walking capabilities went down but her score went up; glass half full or glass half empty? 

Over the weekend we didn't do much. Saturday we went to a few local stores and picked up some herbs and plants. Rima will not be able to garden anymore post transplant. This is because there are spores, fungi and germs in the dirt that can be breathed in and harm the new lungs. Since her immune system will be suppressed with all the anti-rejection drugs she will be on any infection especially in the lungs can be a huge issue. To prevent this occurring gardening is "forbidden" or at least for a few years and if allowed after that, with a mask and gloves and not on windy days. We just may air on the more cautious side and listen to the transplant team and say it won't be in the cards for her post transplant. So, we decided to let her get her hands dirty one last time. 

Rima got to plant two tomato plants, three kale plants, basil and sweet mint. We're still on the hunt for chocolate mint and orange mint to grow and flavor our homemade kombucha. Rima calls the plants her new babies and checks on them every morning through the backdoor with a big smile on her face. Yes, it's as cute and adorable as you might imagine. It's hard to control ourselves when we're at a store with plants, specifically for the one with the plant fever. I'm not naming names but, it starts with an R and ends in ima. She has a very serious plant obsession. The amount of self-control she has to harness to not buy all the plants could be compared to the power that superman harnesses when he tries fly away from kryptonite. Plants are Rima's kryptonite. She just wants "more, more, more, moooorreeeee plants!" 

I feel so bad that once she gets her new lungs that part of her life will be drastically different. You can't have plants in the house post transplant because of the dirt issue. So, what's Rima doing with all her plant babies back in Colorado? Why finding foster parents naturally, who will care for her babies almost as well as she would. I don't fall into this category unfortunately, I'm a horrible plant parent, I forget to water them and then over water to make up for my abandonment. As Rima once so elegantly put it "whatever you touch dies", well she's still alive so it can't be that true... Her plant babies are currently in the care of our brother, who ahhhhh did not quite sign up to be a foster plant parent to so many thirsty babies. Rima's crossing her fingers that maybe 60% of them will survive the rein of Paul. They have better odds under his care than mine, so I have full trust in his watering abilities. 

I'm not sure if anyone else does this but Rima has adopted the routine of naming all her plants. This has been going on for years. It's an expected rite of passage for a plant to be gifted a name from Rima upon entering the house. All her plant babies back in Colorado have names: Jon Snow, Sheldon, Ferdinand, Snape, Sven, etc. Sven was mine and I killed it, naturally. We have a Sven 2.0 in our house here in Minnesota. It's my succulent from Trader Joe's, we will see how long he lasts. We also have a Captain Skully, his pot is a skull and he was mine. Rima is now in charge/owns of both Captain Skully and Sven 2.0. I'm lucky to be allowed within three feet of them. 

 Rima loves the Lorax. 

Rima loves the Lorax. 

 Arts and crafts time at home, taking it easy

Arts and crafts time at home, taking it easy

 

 

 

 

Rima and her nut

Rima and her nut

You've got a friend in me

You've got a friend in me

0