We slept late, and while Amanda was going to start getting ready, I took Tank out. He was annoying; I knew I didn’t have time to get ready, so I just threw some clothes on to run him out. When I got back, I heard Amanda blow her nose in the shower and say, “Uh oh.” She had a nosebleed, and when I went to check on her, the shower floor was bloody. I said lean forward and hold for 10 minutes like the ENT told us. I checked on her later, no luck, so she held it again and finished her shower short one hand. She got out, and it was still bleeding. We tried one more time; I wasn’t sure she was holding it right and for long enough, so I set a timer like the ENT told us. I could feel an ER visit coming, so I hopped in the shower while she held her nose for a third time. I can shower in about four minutes, according to the timer!
I was getting frustrated because she seemed more worried about the blood getting on her and everywhere. We used Afrin, as the ENT said to do if just holding it didn’t work. Then, held again, a short reprieve, then it started bleeding again. Afrin, again, I did that round and used enough to wash brain cells out like I remember the ENT in the ER doing once before. Her holding started working better because the blood came out of her mouth and opposing nostrils. Clots were forming, and she was hacking them up. Clots big enough not to go down the drain. I’d already called the transplant coordinator for advice by then.
By this point, she was bleeding out of her eyes and was having to pick the clots out of her throat. It was a gruesome scene. Blood was everywhere, piles of bloody tissue stacked high. I had to grab handfuls of clots and throw them out of the sink. I had her blow the clots out of her nose. Then we Afrined the crap out of both sides of her nose and held for 15 mins. I was unpacking Tank’s blankets, the camera, and all we needed for him to stay since I’d already packed getting ready to leave. I called the coordinator back, and she said the team said to go to the ER if it didn’t stop.
I was dressing Amanda as she held her nose. I’ve dressed her many times, but not like that! Once she was mostly ready, I called the hotel shuttle, one of the drivers had given me the direct van cell phone. I told him we didn’t need an ambulance, just a lift to the ER. He was at the hotel and said he’d be waiting for us out front. When we walked in, the ER nurse we had when we transferred to the floor saw me and asked if she was ok. Then she saw Amanda holding a bloody towel on her face.
We had to wait a few minutes, and then that nurse came and got us; she was working triage. Knowing Amanda’s history, she took us back to a room, and we skipped around many others waiting. We had to wait a long time to see a doctor. Amanda had a coffee cup I brought from the hotel for her to spit blood in. She had it sitting in her lap, and it was filling with blood and a big clot hanging off the side; I told her to leave it for the doctor to see. I had to keep grabbing abdominal absorbent pads, we ran out of all that the large ER room had in its stock.
By the time the doctor arrived, the cup was almost full! It would stop for a minute but started right back up. The doctor put a balloon-type packing that they inflated after shoving up her nose. It was about the size of a pencil and half as long, and it fit entirely in her nostril and was then inflated. It was painful going in and stayed painful while it was inflated. Amanda just looked miserable. The nurse wanted to get an EKG, and we asked for pain medicine since Amanda’s pain had crept up badly. I had the Ring camera set back up, but it must not have been in the same place. I was getting person alerts from Sponge Bob Squarepants playing the TV!
An ENT came in by to take a look at things. She took the balloon out, thankfully, after it was deflated. After taking a look, she packed it. There were different types of packing in a little pouch she brought with her. She wanted to use an absorbable packing. It was the size of a tongue depressor and looked like one. Not the small ones, either; the big ones are almost as long, about 3/4 the length of a pencil. It fit all the way back in Amanda’s nose with room at the tip to spare. It was freaky watching them put that in. It was doused with Afrin after inserting it. That and the blood would absorb and make it swell.
This resident ENT called the chief resident and had her on speaker. She explained she could see the bleeding, and it had a pulse. The chief said they’d need to use silver nitrate on it to help stop the bleeding and mentioned admitting Amanda. She was already emotional, and those words made her cry. Once the chief arrived, they didn’t remove the packing since it was working, but they got the silver nitrate stick down the side and on the bleed. She told us that it was unusual that they could see a bleed that well. It is low down on the septum, making it easily accessible.
As the chief resident reviewed things with Amanda, the PA we like came in. The chief mentioned a transfusion; I was already concerned about that since we had just treated the blood with a costly antibody treatment. So I asked the PA if we needed to do that or if we should hold off because of the Soliris. She said they’d hold off on a transfusion if her hemoglobin was seven or higher. She checked her phone, and it had just come back 6.6. So she needed to have one, but she wanted to confirm with the transplant docs and pharmacist first.
Amanda was ghost white and so pale. No hemoglobin labs needed to be back to know she needed blood. The PA said she didn’t even hardly recognize her with the fluid retention and paleness. Amanda has been distraught about the weight gain and fluid retention. Her figure is just situated from all the fluid. Her legs, hips, and thighs are so puffy. The ER doctor came in and mentioned the admission, but the PA was on our side and told him we could go if she did well after the infusion and her level was up to seven. He didn’t like that, but a transplant PA outranked an ER MD; she was ready to fight for us to be able to go home before we came back next week.
Amanda’s eyes were burning, I imagine from all the Afrin mixed with blood that was flowing out of her eyes. Since things had calmed down, I needed to go let Tank out; by that time, it was five. I needed something to eat, so I placed a pickup order from Chipotle since it was right next door to the hotel. When I got to the room, I could hear him tank soft howling and whining; I’d already caught him howling a bit on the Ring! I took him out, stopped by Chipotle with Tank in tow, picked up my food, and returned to the room.
I ate, then took off for the hospital. Amanda initially didn’t want anything, but the transfusion would take four hours, so she wanted a refresher. I had a kid’s meal from Chipotle. It came with a small drink but didn’t fill my cup since Tank was with me. So I filled that out and grabbed Amanda a refresher from the next-door StarBs. It was the regular afternoon barista working. We didn’t have coffee this morning, so I didn’t have leftovers for my afternoon drink. It didn’t matter that I didn’t order my cup of ice and cold foam; the barista had those waiting for me with the refresher anyway! As I rode up in the elevator, a nurse asked if I should go to the cafeteria, I said no, this was the real deal. He responded with eww, you all fancy. I said, walking all the way across the street to get the real deal; she was, oh, I’d be that way if I walked that far, too! I went to get a cup of coffee from a waiting room on my way to the ER for my ice and cold foam, but it was out of order, and I was sad.
The infusion was going when I returned to the ER room with Amanda. Not long after, she started looking better—a lot better—and less like a vampire. They had given her some premeds beforehand and a dose of diuretic to remove some fluid. After her color returned, she was flushed in the cheeks. The nurse was worried it was a reaction to the transfusion. She was splotchier a while before the nurse came in. I mentioned it was normal after the PLEX and IVIG, but she still had the doctor come in. He wasn’t concerned since she wasn’t showing any symptoms and wasn’t splotchy anywhere else. It looked like we would be good to get discharged when the transfusion was finished.
I went to grab the wheelchair since the van driver got off at 9:30, and we would get out after that. I just called the driver to pick me up, and he waited while I got the wheelchair out of the car. The transfusion was close to being done once I returned. It still took forever to get discharged, like it always does. They didn’t get labs right away, and then they were waiting on saline nose spray that we would have gladly paid for some from the pharmacy just not to wait to get out of there. Amanda was perturbed, ready to get out of that place.
Amanda hadn’t eaten all day and was getting hungry and wanted soup, but our choices were limited, being so late, near midnight. I found a Chinese place open late. I ordered as I wheeled Amanda to the hotel. I took Tank out, and just about the time we were done, the food arrived. We ate dinner and got to bed. Hopefully, we will make it home tomorrow. We’ll spend three nights at home, then come right back!
Response
Praying for you 🙏.