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The sound of twenty-four alarms

The sound of twenty-four alarms

The comforting feeling of knowing that Rima is only a few feet away from me and not a thirty minute drive, is better than a fuzzy warm blanket. So far we're day two into her being home and so far so good. When we arrived back home on Wednesday my to do list seemed to be never ending. I got the house in tiptop shape the night before and that morning. I set up her room, reorganized her closet and dresser. In my mind, her room needed to be running at the highest level of organization to ensure top time management. FYI, I use to be a producer/project manager in NYC, so I live on this type of stuff, schedules, organization, problem solving, stuff most people hate I dream of. 

 The first quarter of my alarms. 

The first quarter of my alarms. 

Before departing from the hospital we had worked out a new IV schedule for her. After a few rough drafts and working with her amazing care coordinator we had a final version. At first it's a lot to wrap your head around but after a few go's it's whatever. She has three IV drugs. Originally she had five but two got switched to oral, which save us a good chunk of time. Her three IV drugs are, Colistin, Aztreonam, and micafungin. In addition to these three drugs she also had to do six boluses, a bolus is basically, saline to hydrate. She has to do three 100ml boluses and three 200ml boluses. One has to be before the Colistin and one after, due to that drug being hard on the kidneys. 

Timing is a big component in keeping consistent with her IV's. Aztreonam has to be given every 6 hours, we have her on a 6am, 12pm, 6pm, and 12am schedule. Aztreonam runs for an hour. Colistin has to be given every 8 hours, and runs for about 45minutes. We have her on a 7am, 3pm, and 11pm schedule with a 100ml bolus that runs for a half an hour before and then a 200ml bolus that runs for an hour after. The micafungin is given once a day, we have it scheduled for 4pm and it runs for an hour. Before and after each drug, we need to flush her port with saline. After each chunk of IV's are done with for the time being we flush her port with a heparin flush. Heparin is a blood thinner that decreases the chance of the line clotting. She has a Y extension connected to her port which allows us to run two things at once. For example, I can run her Aztreonam and the 100ml Bolus at the same time. We also have to make sure to take out each drug at least 30 minutes beforehand to let them warm up a little. Having cold drugs push through you're veins is not the cat's meow.

 IV drugs 

IV drugs 

Between her IV's she has to do her vest and inhaled nebs four times a day. We have her on a 9am, 1pm, 5pm, and 9pm schedule. She has about six medications she does by nebulizer throughout the day: duoneb, hyper saline, pulmozyme, budesonide, perforomist, and colistin. The vest takes about a half and hour and all the nebs can take anywhere between twenty minutes to an hour. She also has a several oral medications she has to take once to twice a day. Her oral meds are: sivextro, bactrim, prednisone, gabapentin, ciprofloxacin, and azithromycin. Is your brain a scrambled mess of eggs yet? On top of that she also has to take a bunch of vitamins and supplements, currently that number is at fifteen, it will grow. 

I currently have twenty-four alarms set on my phone. These are for the IV's and neb/vest treatments. We also have schedules taped up throughout the house as a visual reminder for us. I don't want to forget about an IV or medication. I don't want to be the reason Rima spikes a possible fever and ends up back in the hospital. On the fever subject, we have to check her temperature at least twice a day and if by chance she goes above 100.4 F we have to go to the ER. Now, I refuse to allow her body to get a temperature, my foot is down and glued on this subject. The thermometer we have only shows the temperature in celsius, ha, conversion town here we come!

In-between my twenty-four alarms, we also have to worry about food, tube feedings, physical exercise, rest and keeping her away from germs. We have her back on the pulmonary rehab train. She will be attending pulmonary rehab clinic twice a week for an hour each time. That is not enough to build up her muscle and keeping this "get Rima into great shape before transplant" train moving forward. She will be going to the gym with me daily and walking on the treadmill and or using weight machines to feel the burn. Don't worry we will be bringing very strong disinfectant wipes with us. 

 tube feeding supplies, meds, and enzymes 

tube feeding supplies, meds, and enzymes 

This flows into the subject of breathing. Before Rima was admitted into the hospital in November she was using a portable pulse concentrator This machine only goes up to three liters for oxygen and does not provide constant air, instead it pushes out puffs of air. Rima has moved up the ladder in her oxygen intake needs. She now needs constant oxygen at least running at 4 and 6 if she's being active. Right before she was admitted we had started the process of getting her liquid oxygen. Liquid oxygen is pretty cool, very Back to the Future. Oxygen is frozen to a liquid state and stored in a large cylinder. There is a charging station that is the large cylinder, it's about four feet tall. Then there is a portable machine that you take out into the world with you so you can breathe. 

 Charging station 

Charging station 

 Portable liquid oxygen machine 

Portable liquid oxygen machine 

We got a full tutorial about how to fill the portable machine from the company who delivered this futuristic machine. It's pretty cool because when you attach the portable to the charging station and push it down, it fills up and cold smoke comes out on the sides. Once the portable is filled and you detach it from the charging station, the metal piece that the liquid oxygen comes out of is usually covered in ice crystals. There is obviously certain precautions we have to take and be mindful of. The first few times I filled the portable I was a little anxious but I'm still standing, so that must be good, right? The major plus to this is it can't blow up....yay! 

 Home oxygen concentrator, which she is connected to 24/7 at home. 

Home oxygen concentrator, which she is connected to 24/7 at home. 

The portable is quite the game changer for a few reasons. It gives her constant flow of oxygen and it goes up to a higher power. It also is quiet! Her old portable, Pablo she named him, was such a loud mouth. We could be in a store and I'd be four aisles away and know where she was just from the sound of Pablo. With the new portable she could be an aisle away and I'd be yelling out "RIMAAAAA WHERE ARE YOUUU?" like I lost a three year old.  She will be carrying this portable in a backpack. We went out yesterday to run a few errands and she was using a backpack to carry it. We need to get a better backpack because her current once is just fabric and has no stability or structure. The portable needs to be sitting up straight and in her current backpack it can easily slide sideways. Also it got pretty cold and because of the flimsy material her bum got pretty cold. We're on the hunt for a new futuristic backpack!  

This is a full time job taking care of Rima and her IV's, breathing treatments, medications appointments, and health needs. Being a full-time caregiver has just kicked into high gear. I don't understand how people who have similar schedules do this by themselves or even while working. I asked Rima this question and she said the majority of CF'ers can't work full time or at all because this can happen. Or if they do, their jobs are pretty flexible. Some CF'ers also do not have as full of a medical treatment schedule to stick to and just do the basics due to their health not have declined too far.. I think I'm lucky to have had a background in crazy schedules and always troubleshooting people, personalities, and problems. Even if the problems were trivial, like people overreacting and not double-checking their own work. The oh so exciting life of working in a photo studio. 

For Rima's first day back she requested I make her one of her favorite comfort foods. Corn chowder, the one our mom made for us growing up. What Rima requests she shall receive. She's loving being home and being able to have hot food upon demand and not from a microwave, takeout, or the horrible cafeteria. I baked her some lemon squares as a welcome home treat, we'll see if she eats them...trying to build up that girls sweet tooth is as difficult as it use to be to feed her! 

 

 

 

Can't stop, won't stop!

Can't stop, won't stop!

The sweetness of freedom

The sweetness of freedom