I had the biopsy at Mass General on 3/30/15. Didn’t feel too good right after. A lot of lower abdominal pain where I couldn’t get comfortable. Felt nauseous. It seemed to be gas, so after an hour or two I was released to go home. The pain came and went until after dinner that night and it subsided. During the night I went to the bathroom and my urine was a dark yellow. Thought it was from some med they had given me. Tuesday I had a hair appointment (can’t miss that) and eye doctor appointment. Felt fine. Tuesday night got up to use bathroom as usual and had very sharp pain in back that came around the front and gripped me like a vice. Very painful. Lasted a few minutes and was gone. I went back to sleep. Wednesday I was very tired in the morning and napped. Had lunch and a couple of hours later I threw up. Weird. I had some pain that again I thought was gas and my stomach was feeling a bit queasy. I put off eating dinner for a while. I finally decided to try to eat and took two bites and the back and vice grip pain was back. I needed to throw up. I did and it was BLOOD! There were a few clots of blood and then a lot of fresh red blood. I called for Ray. Talked to Dr. Hong and we were off to Hartford Hospital emergency room – Ray, me and Julie. Ray let Jay know when we got there.
After hours of being poked and prodded, I was finally taken to a room at 5:30 am on Thursday. A few hours later a GI team came in headed up by Dr. Colin Swales. He suspected it was a bleed from the biopsy. They wanted to do an endoscopy to make sure it wasn’t anything else. A few hours later I was whisked off to have that done. Didn’t take long and it confirmed what Dr. Swales thought. Meanwhile, they still wouldn’t let me eat or drink because they might do another test. Finally around dinnertime on Thursday I was allowed water, juice or ginger ale. Yeah! Liquid diet.
Around 8 pm they moved me from the 7th floor to the 5th floor into a private room on the surgery floor of the Bliss building.
Friday morning I had another episode (pain included) with a bm and vomiting that was just dry heaves. BMs were the ‘old blood’ leaving my system. I scared a young resident right out of my room!!! I had a liquid breakfast and a soft lunch of scrambled eggs. They decided to give me a full diet for dinner. Heaven! Had mac’n cheese. 11:30 Friday night I had another episode. More pain, more ‘old blood’ in BM and vomited my dinner and more blood – old blood. I was very upset about this because there was a chance I was headed home on Saturday. I knew that chance had just flown out the window. So of course on Saturday they say they want to continue monitoring my episodes. They were taking blood every few hours at this point and my liver panel numbers were higher than they liked and they said I may have to have another procedure. They were also monitoring blood loss where I might need a transfusion. I opted to have a soft diet for Saturday. I ate scrambled eggs for breakfast, lunch and dinner! By breakfast on sunday I couldn’t stomach the eggs anymore and asked for something else. I think they bought me pudding. (After I said I wouldn’t eat cream of wheat!) Had full diet for lunch and dinner. Yes, it was Easter Sunday and I was in the hospital. Shed a few tears on Saturday when I knew I wasn’t going home and wasn’t spending the holiday with family. Had visitors on Friday and Saturday and Sunday though so all was good. Of course, Ray and Julie were there most of the time. Jay and Heather came every day, too.
At some point I asked about taking a shower. I think it was Sunday and was told that I needed to let the water run to warm up. After 5 minutes of cold water, I gave up. Thankfully I had hot water in the sink in my room and was able to wash up in there. I don’t know what it cost to stay overnight in the hospital but I would guess $20,000 to $30,000 and I couldn’t even get a hot shower! They had a lame excuse that they’ve been having problems with it.
I had a pain free BM on Sunday night so I was convinced I was going home Monday. Early Monday another intern came in and said my liver panels were still high and they wanted to schedule a procedure, ERCP, for Tuesday. I told them no way. I was going home and that was that. After a few hours of back and forth between the 2-3 teams of doctors I had they agreed I could go home as long as I had a blood test in 2 days and scheduled the ERCP for later in the week. No problem. I had been in there for 5 nights without much sleep. If the nurses or aids weren’t bothering me the noises made by patients on that floor kept me up. AND I needed a shower. Finally I was released to go home at 2:30 pm. Came home and took a 2 hour nap. Had a nice dinner and then a wonderful shower!
The ERCP was scheduled for Monday 4/13/15 at 7 am. I had blood drawn at my oncologist office on Wednesday. After waiting more than an hour, Ray and I were taken to a room so I could change into a johnnie for the procedure (johnnie stories to follow at a later date). I was just changing when the GI doctor showed up and said he just looked at the blood work from Wednesday and my numbers were coming down and I didn’t need the procedure. Ray and I were dumbfounded. We said we just want things in order for the clincial trial. He said, let’s do another liver panel blood test. If the numbers are up, we’ll do the procedure later today. If not, you won’t have the procedure. An hour and a half later a nurse came to us and told us my numbers were almost back to normal and I would not need the procedure!!! YAHOO!!!!
While we were waiting for the blood test results we had the opportunity to visit my anesthesia friends. Their office is on the same floor as GI area. Saw a few familiar faces. It was nice just visiting with them. Doctor that was going to do my anesthesia stopped by the room and visited with us too. It was just nice seeing people I worked with from HAA.
Ray and I went to IHOP for breakfast and celebrated. I texted the kids and Diane. Diane let everyone in the family know the good news. It wasn’t even a thought that the procedure would be canceled. It was crazy, but fabulous news! It meant I had no blockage which was big. Having blockage can cause all kinds of headaches down the road, so it was a very good thing.
Ray and I are headed to Mass General on Thursday 4/16/15 for the results of the biopsy. Hoping and praying that they found the gene mutation and that I’ll be able to get into the clincial trial. Meanwhile, I’m enjoying finally feeling better. It’s been a long two weeks.
Kitchen is almost done. We’re using it. Lost the 3 day Easter weekend. Some finishing touches on the backsplash and painting to be done and we’ll be there. I’ll post a picture when it’s all done.
Love to all. Thanks for all the prayers and positive thoughts. They are helping me. You all give me my strength to fight this battle.
