The sweetness of freedom — Lung Story Short...

Boy oh boy, this past week has been pretty busy for the two of us. We have some BIG news! Rima is home! After eleven and a half weeks in the hospital she was able to finally go home. There was a lot that spurred her going home which I'll get into in a little. She is still listed and waiting for new lungs, that has not changed. I'm so happy she's home (temporary home in Blaine, we're not back in Colorado). I don't think I've really gotten much sleep the past couple days due to the excitement of her being back with me.

We also had some other big excitement recently. One of Rima's super close friends, Kate, came to visit her for a few days. Kate had reached out to me in December about coming to visit in January to surprise Rima. After some planning and secret keeping Kate flew in last Thursday from Colorado. Rima, was oh so surprised when she saw Kate walk into her room. Exclamations of surprise and delight could be heard a few doors down, I'm sure. Kate was such a trooper and became a fast pro with hospital life. She slept over at the hospital the whole visit. Not everyone can handle sleeping in the hospital, Kate made it seem like a piece of cake.

Kate's visit came at the perfect time. My body decided to get a second bout of the cold I thought I had just shaken off. With Rima fully occupied I didn't feel guilty about leaving earlier than usual to go home and rest. Being Rima's caregiver gives me zero time to be sick, so you can just imagine my frustration at having my body not cooperate for the second time in the same month. Get it together body, this is no time for being a sissy, buck up butter cup.

We could not march outside, so we marched around the hospital instead!

Rima and Kate had a wonderful time. If someone were to write a childrens book of two friends spending time together in a hospital, those two would be the main characters. I suspect the story line would consist of giggles on giggles, snapchat silliness, late night adventure walks through dimly lit hallways, mid night snacks of chips and cheese, and movie nights. They have coined the phrase "squats then snaucks". Yes, I know snacks is not spelt with a "u" but how else do you say "squats and snaucks", it has to be said in a low baritone British accent. You see, it's so much more elegant with a rounded low "u" sound than just a boring "a" sound. If you're wondering, they did do squats before they ate snacks.

We didn't get to go on any none hospital adventures with Kate. We did go bowling though, but that's connected to the hospital through tunnels. Rima is not the biggest fan of bowling but I'm wearing her down. She'll love knocking down pins by the end of the year, I'm putting my foot down. The three of us decided that once we're back in Colorado we're going to start an all ladies bowling league, appropriately called The Nasty Woman, applications are currently being accepted.

Rima was so thrilled to have a sleepover buddy for five straight nights, it was great! Kate must have brought positive vibes with her from Colorado because talks of letting Rima leave the hospital started to pop up. In all honestly it was also a compilation of a few things that sparked her freedom. First off, for those of you who have Medicare, I'd like to say we feel your pain. Don't get me wrong we are so thankful for this program and hope pray that Rima and other CF'ers wont get screwed with this new regime in power. We've learned some "new" rules about the program, that we were not so blissfully unaware of until very recently. Medicare allows you up to 66 days per one hospital admission. Once you use up those 66 days then you start to dip into your 60 lifetime bank days. Lifetime bank days can be used when you run over your admission days but once you use up your lifetime days that's it, they're gone, puff like a cloud of smoke.

Rima, has been in the hospital since November 6th, that's a total of 80 days in the hospital. If you did the math like we did then you know she has already used up 14 of her lifetime days. Her 66 admission days refresh, as in she gets a new bucket of 66 days to be in the hospital again only after she is discharged and out of the hospital for a full 60 days. Ladies and gentleman, excuse my French, but she better not be fucking waiting for new lungs for an additional 60 days. Yes, her admission days would refresh, but that's two months...we've been waiting for four months already. Yes, people wait longer, some people wait years. I totally get that, but to be fair they estimated our wait to be about three months and that was the longer end of the wait. Yes, again I know you can't correctly estimate this type of thing, or actually have a waiting time carved in stone. I'm a Libra I see both sides of an argument, so please know that if I sound like I'm "complaining" I also know that we have it better than a lot of people.

Anyways, so this whole 66 admission days and dipping into her lifetime days really shook us for a few reasons. One, the logical reason, what happens when you use up your lifetime days and you're still in the hospital, or leave but go back in before the 60 day refresh rule? Well, you better have a good secondary insurance or you're royally fucked, excuse my French again. We thought for about a day that we were going to be getting a very fat bill if this "worst case scenario" happened. During this 24 hours or so of full on panic we were tapping our brains for alternative options. Paying a "slap me in the face" bill was not an option for us. One night for Rima in the hospital runs around 8k. I'm sorry but even well off people don't have extra pocket money to be shelling out over 150k for a hospital bill, not including all the other stuff that goes along with the admission, that price is just the room! If they do then well, I hope they give to a lot of charities.

In this time of panic and knowing that paying out of pocket was not an option I brought up the idea of maybe her going home. The doctors has said earlier that week that she was "well" enough to go home, but due to her intense IV and antibiotic schedule, going home would be very difficult. When I say "well" I mean, fever free, mobile, eating, good spirits, and oh, the big one, she's 130 pounds. Let's pause on that for a little. This is YUUUGE, yes, very big, the biggest accomplishment. When we were back in Colorado this summer her team said they wanted her to gain as much weight as possible before the transplant. This is so your body has some reserve while it's healing. The healthier someone is going into a major surgery like a double lung transplant the better the odds are in your favor. I asked them what a good weight for her to try to reach, they said 130 pounds, but that it would be hard and unlikely. Insert victory lap here.

She's at 130 pounds and I'm not stopping there. If I can get her to 135 pounds then gosh darn it I want a medal. Yes, yes, Rima gets one too, but do you know how hard it's been to try to get her to this weight. The majority of adults in the US have to diet or eat correctly. I'm sure a majority of you know the internal battle of fighting you're inner chubby kid and not having a doughnut or six. So flip that inner struggle to trying to eat one whole doughnut and not being out for the count for the next few hours or meal. Yeah, the struggle is real, at least for Rima, in that department. But, after many months of refusing to lose to her internal battle Rima is now and finally an eater. She ate a whole burger the other day and then later a pizza. Miracles do happen, don't let anyone tell you otherwise. I want a t-shirt, that says "Hi, I'm bean, the miracle maker".

Okay so, now that I have my t-shirt slogan order in let's get back to the issues. Paying out of pocket is not and was an not option. So the only option I saw was getting Rima to come home. I ran it past her and she was on board with it, but pointed out her medical team might not be as enthusiastic as I was. Between you and me, I was VERY enthusiastic about this idea. Once I got the green light from Rima I basically stalked her CF care coordinator. I expressed my bubbling enthusiasm to her and made it know that we had no other choice than to have her come home. I would do anything they wanted. I would call in her vitals daily if needed, I administer her 4am IV's, anything to get her home. Her CF care coordinator was impressed and happy at how dedicated I was to this cause but had to run the idea by Rima's transplant team. Another day of waiting was ahead of us.

At this same time the idea of her being transferred to transitional care was also brought up by her medical team. Transitional care is a step down unit from the hospital. It's a place people go to who are to "well" to be in the hospital but still need some extra help to get use to being on their own before they go home. She would have a lot more freedom there, less interruptions throughout the night and a bit more privacy. It sounded as if getting her there was a bit of a long shot though. Transitional care usually does not "accept" patients who have an open end date of intended stay. Their usual patients stay anywhere from a few days to a couple weeks. Rima would be their until further notice. Her IV schedule also could be an issue for them. It turned out that it was a long shot, her Iv schedule and not having an actual goal date to go home sealed the deal for them turning her down.

While we were waiting to hear back from the transplant team we found out that Rima's secondary insurance would pay for her hospital stay if she went over her Medicare hospitalization days. After a deductible and a copay, the number that was given to us was very doable. Lesson here, make sure you know your coverage inside and out. A day later we heard back from her transplant team and they were all about her going home. The race was on to see how fast we could get her discharged from the hospital. Her CF care coordinator deserves a medal. She literally kicked some serious ass. She got all of Rima's drugs in order, she even got two of her IV's switched to oral meds. She helped me get proper training on how to properly administer Rima's IV's. Nurse Bean was in the making.

Friday, Monday and Tuesday was a whirlwind of altering IV schedule, coordinating liquid Oxygen, ordering medications, navigating insurance, packing, cleaning, and the constant feeling that the ground was going to give out. Rima didn't want to fully believe that she was going to go home until she was in the car, just incase something happened, like a fever, or insurance not covering a home IV. I, on the other hand was running through the halls of the 7th floor, basically with my hands in the air. One of us is a realist; I'll let you guess...spoiler, It's me!

Wednesday morning came, D day. I had made a trip to the car with a full wagon of her stuff from her hospital room for the last couple days, to lessen the load on the final day. If anyone ever want's a free workout and to do some good, go to your local hospital and ask when the longest staying patient is leaving and sign up to help them bring all their stuff home, two birds one stone. I don't know how she had all that stuff in her room or when it made it's way there but I made a total of six trips to the car. We had to be back at the house by two to be there for her IV drop off. We were on a tight deadline, but a very exciting and welcome one. As a thank you to the nurses, other than my weekly homemade cookies or toffee, I got them some good coffee and we made them an Air Catcher for their station. Rima wrote them a card and colored them an octopus, to hang on their station along with the Air Catcher.

Off we were, onward and upward, north to be exact. Rima was free! We had thought/had been told that she would be in the hospital till the transplant, however long that would be. Her IV schedule is not a walk in the park but I've got this. Next post I'll write all about her home IV schedule, oral meds, liquid oxygen, and freedom, sweet, sweet freedom. Just know that there is nothing more currently satisfying than hearing her oxygen machine purr and spurt...she's home!