Well, my late night ER visit was a waste of time, except I found out I didn’t have strep, the flu, or covid. The doctor was no help. I explained my symptoms and how I was concerned about my immunocompromised wife. He said well, there are hundreds of viruses, it could be. When he came to tell me the test results were negative, he mentioned it was likely viral, but had no treatment recommendations, and just said to take precautions for your wife. The only good thing was it was slow, and I was seen in a few minutes after registering, and wasn’t even there for an hour.
I did feel a little better this morning after I slept in a bit. I asked the new dog sitter, Sybil, to take Tank out for a walk and feed him late afternoon/early evening so I could take it easy and not be back and forth so much. Amanda was happy to find out I’d be staying all day with her.
I made it to the hospital late morning in plenty of time to beat the team. The cardiologist came without the PA. He talked about adding the Metolazone again today. He left and I was at a loss since we were doing the same thing, but Amanda had gained another couple of pounds. I was expecting the PA to come in so we could hash things out with her. She didn’t; all we got was a “keep it up” when he left. I was mad and just felt like we were just spinning our wheels. I thought we could have just gone home if all we were going to do was “keep it up” in the way of retaining fluid. We were both frustrated.
I just planned to email the PA about things. I thought Amanda had her email address, but she didn’t, so I lurked in the hall to talk to them. I finally saw her outside a room and went to speak to her. She said she’d talked to Dr. Nair about things, and he wanted to add another loop diuretic. I just feel like there’s no end in sight. I’m really praying we find a combination that will get us home, keep the fluid at bay, and not tank her kidneys.
After lunch, Amanda got a call from Vanderbilt. It seemed that that was even farther fetched than we’d originally thought. Some of the requirements were that we not only needed to live there while listed, but an additional six months after transplant, since we are so far away. Also, Amanda would be required to have two caregivers, but I’m unsure if we would both have to be available simultaneously. However, it seemed that I alone wouldn’t suffice.
Amanda asked about wait times. The coordinator said that her weight, blood type, A+, and no antibodies were like the express lane to a transplant; days to weeks. Which was the experience we had the first go round. It depended on the antibodies, but she said even complex cases rarely ran over a year on the list. The antibody percentage changes based on location, though. That was new to us, and we hadn’t heard that before. So, Amanda’s 73% number here could be much lower in Tennessee’s; it’s all location-based. They also had desensitization techniques to use as well.
I still think we are better off waiting here for Methodist to list us. It would be much more feasible to do it here, where we already have an apartment set up, I can work and there’s no need to be flying back and forth or have an extra caregiver, but if we needed one it would be much easier to have someone here than halfway across the country. I was more frustrated after that phone call, wanting to see Dr. Nair and talk with him. I want to know if he thinks it’s necessary to go there or if we can wait. We will figure it out if we need to go to Vanderbilt, but I want to know it’s the last option.
I’m all for a consult with Vanderbilt. Have them evaluate and see if they would list and what the antibody percentage would be. The coordinator said the approval would be good for a year, so we would have time to decide. I feel getting listed here with a pre-approval for Vanderbilt is the way to go. That way, if it took too long, we could transition to Tennessee after we were more prepared. That would give us enough time to sell our house and be much more prepared financially to fund a longer stay out of state. I would have a chance to get my hours up to qualify for FMLA with work, too, which would make a lengthy time off work easier and keep my insurance.
The cardiologist initially said the Metolazone would be given at the last dose of Bumex, but it was changed to the middle of the day. It did make the Furoscix do its job better and she has gotten a good bit of fluid off today. The new diuretic was scheduled with the IV Bumex, so the nurse wanted to hold off on them until hearing from the doctors. We waited a while and never saw her, then a couple of hours later it was shift change. I thought Amanda should at least be scheduled, then the other spaced out later if needed. I saw the nurse in the hall when I was going to grab dinner and asked if she ever heard anything back. She had and said the night nurse would give her them both at the same time. That would be at least nine before she’d get them, 4 hours after they were supposed to be given. She’ll be up all night after they kick in now. I’m just worried with as much as she’s gotten off today, the new added diuretic will tank her kidneys. On a positive note, we are getting fluid off with all but the Bumex IV. As aggressive as this is, the oral will probably do the job once we transition to it. Hopefully not too aggressive for the kidneys though.
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