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

Can't stop, won't stop!

Can't stop, won't stop!

Man oh man, it's great to have my favorite buddy back with me! I have someone to talk to in the mornings, afternoons, and evenings!! Clearly I need to be entertained at all hours of the day. I'm not going to lie I LOVE that I haven't had to drive through the hospital parking garage, up six floors of ramps, behind people driving two miles an hour. I'm still getting use to this new early morning schedule and probably still will be for a few days. I'm either going to be up and super productive in the mornings or I'll be in a catnap state till noontime. At least that was me Friday morning. I even had dreams of my alarms going off and me missing them. Which, in fact, made me wake up every twenty minutes thinking I missed them. 

 Trying to organize all these grenades! 

Trying to organize all these grenades! 

Rima is all about taking turns with the morning IV schedule. I pointed out to her that I'm more of a morning person and she's a night owl. So maybe we should stick with me running the early morning IV's and her the night ones. So for now that's the plan, or until one of us wants to switch. Friday we had plans to go to the Como Conservatory. Rima wanted to get some serious plant time in. We almost were unable to go due to needing to be home for her second liquid oxygen tank delivery. We were getting a charging cylinder for the car. Her portable liquid oxygen machine would be good running at four liters for about 3-4 hours. That time allowance seriously limits our adventure time or going to long appointments at the clinic. To render this time issue, we asked for a charging station for the car. It's a bit smaller than the house charging station but it's great for when we're out and about. 

Thankfully the delivery of the charging station and the delivery of her additional IV's serendipitously happened at the same time. The liquid oxygen delivery guy talked me through how to use the portable charging station and helped me set it up in the backseat of the car. Don't worry it's all snuggly safe and buckled in! After gathering any meds and IV's we would need for the next few hours we were on the road to the conservatory. We had visited it this fall  before Rima was admitted into the hospital. This was one of Rima's requests when I asked her what she wanted to do to celebrate her discharge from the "clinker". We got to the conservatory about an hour before closing, just enough time to stop and smell the roses. 

We brought our trusty wheelchair, which an amazingly nice local CF family lent us. The conservatory was a bit more crowded than we expected. We had forgotten that Friday is a big field trip day for schools. Regardless of the crowding we soaked in the humidity and the greenery. It was nice to be in warmth when the outside world is covered in snow and ice. Later on that evening Rima and I decided to travel back in time and watch some of our childhood favorite movies, The Court Jester and An American in Paris. We eat dinner by six, watch old movies, listen to jazz and classical music and wear house slippers; we're officially a eighty-year-old married couple. Yes, we would like tea for two, and two for tea!

Saturday Rima was hell bent on going to the gym with me. She's been very diligent about getting in her steps. She had been clocking in about one to one and a half miles a day of walking in the hospital. We didn't want her to regress on all the progress she has made, muscle wise. She's been having a bit of a harder time breathing since she's been back. It could be a "new" environment to get use to, or her tubing, because it's so long, air could take a little longer to get to her. Regardless of the reason or the fact she was a bit wheezy, going to the gym and walking was happening. I am so proud of her! She walked twenty-five minutes on the treadmill.  She was on six liters of oxygen and her liquid portable tank was in her backpack hanging on the side of the machine. She was also running two IV's while working out. After the treadmill she even did leg work with some weight machines. 

My sister has every excuse in the book to not go to the gym, let alone go out in public. I don't know if I were in her position if I would have gone to the gym. I'm a bit more self-conscious than her, a bit meaning a lot. I'm learning to not give a flying fox what people think or to get worked up at double takes or side-glances at her. It's hard for me to control my reactions or words that almost come out when I see people stare or give puzzled looks. Rima says let it go and ignore them, but I just want to lay into them and point out how ignorant they are. But, of course if I do that then I'm the pot calling the kettle black expecting everyone to be use to seeing tubes, IV's and a young person in a wheelchair or walking slow. 

We had a bit of a "situation" Saturday night with Rima's port. At the gym when she was doing her flushes and IV changes, she noticed it was really hard to push the flushes in. She described it as hitting a brick wall. This was concerning because that meant that the medicine was not going through her port correctly or just incredibly slow. When we got home she tried to super flush her Y-port and see if she could clear whatever was blocking the tubing. After that did not work she called our Home-care company and she spoke to one of the on-call nurses.

They were going to send out a nurse in the morning with some super potent meds to try to clear whatever was blocking her tubing. Luckily one of her CF friends suggested she pull back on her port. Which she had completely forgot to try in the first place. Pull back means instead of pushing her flush through to pull back on it to get a blood return and seeing if she can suck back on whatever is blocking the line. That was a good sign, meaning the tubing was not completely blocked. After doing this, her flushes were going through easier. but not completely back to normal. Her port actually in the last several weeks has become a tad sluggier every week, until yesterday when it hit a brick wall. 

 getting some blood return from her port!

getting some blood return from her port!

 Super concentrated anti coagulant

Super concentrated anti coagulant

Sunday morning the Home-care nurse came by and assessed the situation and pushed some cathflo (anti-clotting) medicine through her port. She walked us through what to do after and if it happened again. Hopefully whatever she did works and we wont have issues with blocking again. Sunday we had big plans of going to Hy-Vee. For those of you who don't know what this magical place is, I'm so sorry because it's just that magical. If you have ever been to a Wegmans then I would say that's close enough. Hy-Vee is a cross between Whole Foods, Trader Joes, and Wegmans. It's a regional grocery chain in the Midwest I guess predominantly in Iowa and Minnesota. They should definitely expand. After the Hy-Vee tour extravaganza Rima wants to go back to the gym and do some leg and arm workouts. 2017, you better watch out, Rima's coming for you and hard. 

That's not a happy face

That's not a happy face

The sound of twenty-four alarms

The sound of twenty-four alarms

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