Once the transplant team came by, we were able to fill in the pieces on how things were going to go for treatment. First was the central line; they would typically go through the neck or chest for more mobility. With Amanda’s venous structure above her heart being reconstructed, they wanted to use her groin. They mentioned the left side, and I questioned that stately because she has the stent there. But they were able to go in above where it was. So, not much walking around with it, but I think eventually they’ll let her walk to the potty at least. Right now, she has to stay within arm’s reach of the bed because her rate is still so high.
The treatment of the rejection will begin with 3 days, starting tomorrow with plasmapheresis or PLEX (plasma exchange). Then, a day off the doctor called a “holiday.” Not funny when we’re talking about this all going over the Christmas holiday! The “holiday” is followed by an IVIG (Intravenous immunoglobulin) treatment. This is a dose of donated immune system antibodies. Then, another 3 days of PLEX, another “holiday,” and the IVIG is up in the air at that point.
After this treatment, her body will recognize that there are no antibodies (nothing to fight off infection) and freak out. The body will tell the bone marrow to produce plasma, which will, in turn, make antibodies. We don’t need this, so the cardiologist will then decide what medication to use to stop it. We’re learning a lot about all of this, and I’m sure we will learn even more once it starts.
I was worried if I could stay the night in the ICU or not, and no one could answer that question. Even when we left for the ICU, it wasn’t 100%. Once down there, it was made clear I could stay. I had been looking at the hotel we stayed in and some apartments. So, it was a relief that I could stay and a load off us financially.
Just before we left the transplant floor, Amanda’s heart went crazy, and her chest started hurting. Once, the ICU team came up to check on her and saw the high rate, and they freaked out. They were mad that nothing had been done. They then did an EKG, and an echo was ordered. Once the EKG was through, they whisked her off to the Cardiothoracic Transplant ICU.
Once in the ICU, they got to work and were on the ball. The level of care in the ICU is always more attentive, but it’s unmatched in the CTICU. The nurses are always in the room or around and only have two patients at a time. Everyone here is at a higher level and doesn’t mess around. So once the ball was rolling, we saw at least five doctors within 30 minutes. They got her all prepped and ready for things, and the doctor for the central line was getting a sterile field set up for the procedure within an hour of getting there. Also, when you push the call light around here someone is in the door in seconds.
The rooms are all decorated and on the outside doors. There’s a Christmas tree at the nurse’s desk, and each room has a different Christmas saying about the CVICU.
The chest pain only got worse, and they gave her an oral med. It wasn’t touching the pain, so I encouraged her to call the nurse. Once our night nurse came in, she was on the ball, calling the doctor to get IV pain meds. That finally did the trick, and she got a little something for the rate, which finally started easing down to at least 130. The 145 and above are really unsettling for her.
The night nurse was one we had while we were here right after the transplant. She is an absolute riot to be around. She was jokingly asking Amanda if she wanted her to stick me rather than her with the shot she was going to give! Then they ganged up on me even more and joked about giving me an enema. She is a hoot!
The ICU room only has a toilet and no shower, which is just outside the room, with only a curtain for privacy. I needed a place to shower, so I contacted a few people I knew around town to find one. I have multiple options around town.
Amanda’s blood sugar was high, and they had to give her insulin. This is a side effect of the steroids. Amanda isn’t happy about the steroids; she had terrible reactions the last time she did. Let’s just say roid rage is real! She also gained weight, and her face got round and chubby; it’s called moon face. Hopefully, the doses aren’t as high as last time around.
They had to place another IV because her original one blew. They had to get some other meds adjusted. While the nurse was looking at the med list, she noticed Amanda was up for another biopsy tomorrow. No one had mentioned that to us. I’m surprised they are doing one so quickly, but it might be to get a biopsy from the left side of the heart this time.
As I left for my dinner run, I noticed a shower room. When I returned, I asked the nurse if I could use it, and she said sure. But the cost was an enema! It was a relief that I could use that shower and that it didn’t end up costing an enema.
These rooms are much bigger and nicer than any we’ve stayed in here. There’s so much room for activities! I have a good recliner for the day and a decent chair that pulls out into a twin bed for sleeping. This chair is more bed-like, so that’s nice. Amanda’s bed is much more comfortable, she says. It has a ton of adjustments to help get her in just the right position.
Many have reached out wanting to send things our way. Please don’t send flowers, though; they aren’t allowed in the ICU at all. Someone asked specifically what they could send that would help. I’m not asking for anything to be sent, but if you want to send something, I’ll say what I told our friend. Uber Eats/Door Dash gift cards would be good since I obviously can’t cook, and we’ll get tired of the same restaurants around here. Also, you know my girl loves Starbucks, too. This morning, I had just told her, “You know we’re going to have to cut down on StarBs to save a little money.” She sadly said I know.
I plan on trying to get a small Christmas tree instead of flowers for us since this will be our home through Christmas. It reminded me of the multiple trees I put up in our hotel room after the transplant. Tons of people sent us Christmas ornaments to decorate the trees. I had an angel tree for the donor, a heart tree, a hospital tree, and a Star Wars tree for me. It was so special, and we still have and use the ornaments.
I would ask for Christmas cards, though; flood us with them. That would be great to have here. Even if you don’t know us personally but have been following and praying for us, it would be neat to know who follows us. Make sure they have Patient Amanda Simmons on them, with the address Baylor St Luke’s, 6720 Bertner Ave, Cooley 8A, room 6, Houston, TX 77030
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