Amanda has been hurting, whole body pain. She says wherever the fluid is, she hurts. On top of that, the Soliris makes her feel terrible. We ended up staying on the floor for the infusion and not going to the ICU. Dr. Nair said it was more of a late-night decision to keep her close, but we had a good view so that we could stay here. I prefer the opposite side of the building; we can see more grass that way! He was nice and delivered the bad news softly.
A transplant NP came by, but no team or doctor. She increased the Bumex drip to help shed more fluid and asked if we needed anything. I mentioned the ENT consult and the second round of the Meningitis vaccine. The ENT she spoke with said they wouldn’t see us if it wasn’t something acute, so much for a follow-up. As for the vaccine, the transplant pharmacist already mentioned it, she said. We also had a visit from the social worker. I emailed the PA last week about a prescription for a wheelchair, and she said I needed to talk with the social worker. Ours is older, and I needed to dust the cobwebs off before we used it. We have some friends who offered a light one, but I figured we might as well get a new one on the insurance even if we use theirs. They are nice to have around to loan out when we don’t need one.
They finally started the Soliris around 2 pm. I made sure all the premeds were on board to help. I warned the nurse her BP was going to plummet. I guess she didn’t pay much attention to me. She freaked out when Amanda’s BP was 80s/40s. She kept waking Amanda up and wouldn’t let her sleep because she said her BP was up a little when she would wake her. Amanda just wanted to sleep through it as she had done with the previous infusions. The nurse just kept running the BP, too; it was only supposed to be run every 15 minutes; she probably ran 15 checks in 30 minutes! I was just a cool cucumber kicked back, writing my last post, reassuring her that this wasn’t even as bad as the previous ones and Amanda would get better when the infusion was over. She was so freaked out she went out and got a chair to settle in for the long haul. Calling the doctors incessantly, she had them almost move Amanda to the ICU. Once the infusion was almost over, her BP popped right back up, just as I told the nurse it would.
I had turned some worship music on during the infusion, and I noticed the nurse humming along. Towards the end of the infusion, another nurse stopped by and stayed for a while. I Speak Jesus started playing, and she said I love this song, our nurse said, “Ooo girl, we fixin’ to have church!” I mentioned that Amanda was a worship leader, and they both squealed, wanting her to sing.
After the bad news this morning, when I was leaving to let Tank out, I gave Amanda a big hug. She said I think I’m going to need some emotional support fries today! So, after Amanda recovered from the infusion, it was french fry time. I found a new way to get through the maze to the Children’s Hospital Chick-fil-A, skipping an elevator ride.
We had a new cardiologist come by. He was very familiar with the case and from the Advanced Heart Failure Clinic. We spoke of the fluid, and he, without even seeing Amanda before, said you are holding on to 15-20 pounds of fluid. He asked about laying flat, and Amanda said she couldn’t and hasn’t been able to since we came in December. He explained that the fluid isn’t only where you see it but everywhere, including around her organs. So when she lays flat with that much fluid, she is essentially drowning in the fluid. The rejection is affecting her heart and making her heart walls stiff where they can’t pump correctly. Thus, they are not able to get the fluid build-up off properly. This stiffening is called restrictive cardiomyopathy. We had seen it on some of the scans and echo results and wondered. My first thought was that if we get the antibodies figured out, is that damage to the heart reversible? I think the answer is no. I feel the more we learn, the more it looks like another transplant is highly likely.
He also asked about eating, worried she might be losing base weight because the fluid can push on her belly and make her feel full. She isn’t eating a lot but always has a little room for StarBs and fries! The steroids are the only thing keeping her appetite up at this point. That is when he dove into the relisting talk, saying she needed to keep eating to stay healthy when she gets relisted. He mentioned that the antibody treatments she has received usually show some improvement within a few weeks, and Amanda is now worse. Earlier in the day, he and Dr. Nair were at a medical board meeting, and they spoke of Amanda’s case for evaluation and relisting. Things have gotten real today.
They want to get as much fluid off as they can before the heart cath and biopsy tomorrow. It will likely be in the late afternoon. When she gets out, if the pressures are high, they will put her in the ICU to get more fluid off, but in a more specialized way. We think they may be playing transplant games a little, too. The more invasive things are, the better and easier the listing goes. The plan before was to be admitted for two weeks and home for two weeks, which would push her up on the list every time she was admitted.
We also think the progression from not listed to back on the list will be much quicker being a transplant recipient. Before her transplant, she could have lived in a very uncomfortable state for a while; if the rejection continues, she will not survive as long without continuous and likely invasive intervention. So, the severity and need are worse than before. Her condition is already worse than before the transplant, too. We wouldn’t have said that a couple of weeks ago, but now she is really bad. It’s getting scary. The more the day went on, the more it looked like another transplant was imminent. The “big gun” Soliris was like a missile, and it missed; now they will take a rifle out of the scabbard and see what they can hit. The new treatment plan can work, but I am beginning to believe the chances are slim.
We came up here hoping for a quick turnaround, and now here we are, wondering if she’ll leave the hospital at all. I’ve booked all of these stays thinking they would be a couple of nights, and we’ve extended an extra night or two every time. I’d have just stayed with her and left Tank home if we knew she was going to be admitted for so long each stay. We’re racking up Marriott reward points, but we are also racking up the hotel bill too. While we were on the long stay, I was looking into apartments but decided against it, unsure of the treatment plan. We could have quickly paid for a month or two in an apartment with these past few stays. I may revisit that and see what is available. That may be in our best interest when we think of either a transplant or continued treatments.
So much is happening so quickly, it’s a bit overwhelming. We have an army praying for us and interceding on our behalf even when we don’t know what to pray for. We’re believing God will move big and sure he’ll use this for his good.