That's not a happy face
Do you ever wake up in the middle of the night and shoot out of bed because you think you either heard something or missed your alarm and are late? Well, that's been my life for the last week. Almost every night I wake up to the haunting feeling of both these instances occurring to me. The heard something part, is thinking/dreaming Rima is barging into my room telling me she got the call. The missing my alarm part, is a real concern because if I do, Rima's IV's will be running behind schedule. So far Rima has not barged into my room and I have only snoozed once on my twenty-four alarms. I do welcome a good barging in though and soon, like tomorrow soon!
Monday, Rima was back on the pulmonary rehab horse. While she was at her appointment I ran a couple errands. She got some blood drawn after rehab, luckily right down the hall. We had thought that we would need to be home by 1pm to have a home care nurse come and do a bunch of paper work with us for Rima's home IVs. A bunch meaning two hours. What on earth they plan on talking about for two hours I don't have the slightest clue, but thankfully it did not end up happening. Phew, we dodged a very boring bullet.
Tuesday, Rima had her first clinic appointment since being discharged from the hospital last week. It began with a blood draw. Yes, even though she had just given those greedy vampires her blood the day before. After the feeding of the vamps, she had PFTs. She is at FEV1 17%. She has been between 16% and 17% for the last few months. After PFTs we met with one of her pulmonologists and Megan, her transplant coordinator. The minute her pulmonologist walked into the room we knew this meeting was not going to go well. She had a "fuck, this is bad" look on her face. I was naive in thinking that we would be praised for how well we were doing with her home IVs. At how her weight is between 130lbs and 131lbs, at how her FEV1 was "stable". Nope, it kind of was a smack in the face, in the most non-insulting way.
We were doing everything correctly, it's just the fact of the matter, Rima needs new lungs. Until she gets them the concerned look on all her physicians faces won't disappear. Basically the rundown is that she has gone up on her oxygen need intake. At the hospital she was at 4 liters resting and now she's between 5 and 6 liters resting. Resting, meaning not moving or walking around. As soon as she starts to walk to the bathroom or kitchen she needs more. I have noticed that she is out of breath more often than not since being back home, or needing more time to catch her breath after walking from the car inside the house. The team was very concerned about this because her heart rate was also elevated, but Rima pointed out she had just recently used her inhaler before her oxygen and heart rate had been checked. She was also running at 99.4, which in their eyes is a low-grade temperature for her.
Her white blood cell count was at 21,000 on Monday which is pretty concerning. It was running between 10,000 and 13,000 in the hospital. She was at 15,000 at the meeting, they had taken blood before and had gotten the results back. Her pulmonologist said that with her temperature, oxygen intake, white blood cell count, tiredness, and shortness of breath, that going back into the hospital is something we need to think about if not act upon. She thought that maybe one of the factors to all of this might be that she had two antibiotics switched from IV to oral, so she could go home. There is a possibility that her body just needs those meds through IV. You can just imagine what was going through both our minds at this. I was basically using every curse word I've ever come across and I can guess Rima was not too far behind me in this.
Her team met us halfway with Rima being readmitted. The rules are, if she hits 100.4 in temperature we go to the ER. If she continues having shortness of breath even when speaking or it gets worse, ER. If her white blood cell count goes up higher, ER. If she starts feeling sick, ER. As I mentioned a few times before in previous posts, I'm a realist. So, I know that it's just a matter of time till I'm driving Rima to the ER. Whether it's for the reasons I listed above or that we get the call for new lungs. I pray, and I don't pray, that it's the latter. Their big concern is that Rima gets sick or need more oxygen that she could be put on hold again or worse case scenario need to be on a ECMO machine or intubated. Yeah, apparently we're pretty use to Rima's current health that we find it" normal", or "okay" but to outsiders or people not living with it or as close to it as I do, it's very concerning.
This is our "normal", a normal that our team is clearly worked up about something and not in a good way. So you can see why Rima and I were pretty shocked/taken aback at how the meeting went. We went into it patting our backs and came out with the harsh reality dripping all over us. These meetings always run longer than expected. We had been talking to the pulmonologist and Megan for over an hour. Then Rima needed an EKG, to make sure all the drugs she's on are not causing strange heart rhythms. She's on a lot of oral, IV, and inhaled drugs and vitamins. Another fact the pulomologist pointed out, she's on A LOT of drugs. Megan was going to start the process of getting Rima a new home oxygen machine, one that went higher than 5 liters. Her's currently only goes up to 5 liters and with her new oxygen need increase, 5 is not cutting it. If anyone want's to have an oxygen party, I guess we're the perfect house to host it.
Rima had to do a six-minute walk test to have documentation for the insurance company to get a higher home oxygen concentrator. While she was walking, I ran over to get her some Pizza from her favorite pizza place close by. We had plans on going to get burgers after the meeting but with it running much later than expected and Rima's state of exhaustion, I decided that take-out and getting home asap was called for. The burgers could wait. On the way home in-between pizza bites, we discussed the clinic visit. We both agreed that yes, the team had a point. We would have to be more aware of her breathing, temperature, and how she was feeling. I was going to have to be the warden of the house. There might be a time in the near future where I'll have to put my foot down and drive us to the ER. Again, I really hope that it's because we get the call! Send all the good vibes our way, we need this.
Wednesday Rima had pulmonary rehab in the morning and then after we decided to finally try one the cities famous treats. The juicy Lucy, is a burger stuffed with cheese, apparently it's a "thing" here. We've had homemade ones before but its different. We checked out Blue Door Pub and had our first taste of this delicious artery clogging food. On our way home Meghan our transplant coordinator called. She wanted to check in with us and let us know that Rima's score had gone up. It's now 41.3569, we are in the 40's, finally! Maybe we just need to age a little more like fine wine before we get the call?