Well, the last week has been a bit of a whirlwind. Sunday, March 21, my pain came back within 30 minutes of eating my avocado toast as my bedtime snack. My husband was able to massage my back and bit as I laid on my heating pad and it subsided for the most part. Thought I was in the clear. Monday morning I woke up feeling pretty normal. My mid to upper back was a bit sore but I didn’t really think anything of it. As I was driving to work I did my usual (since I have a decent commute) by drinking some water and then eating breakfast. Within 20 minutes the pain returned. I got to work, then immediately turned around to try to get back home as soon as I could. I almost made it, but had to stop along the way to wait for a ‘bad’ point of pain. So eventually I made it home and rested on the heating pad. Had pain on and off all day. Didn’t really eat much because I was afraid to. Just tried to stay hydrated.
Same thing was happening on Tuesday so I called my surgical team to hear their thoughts. Oh, I should add that on Monday I realized the pain was more localized on my right upper abdomen instead of my left (which is where the pain usually is). And Monday night I realized I had some leftover pain medication I could try. So I did and it helped tremendously. I was able to sleep and woke up feeling rested. Okay, so talked to the surgical team on Tuesday. They said since the pain meds were helping to wait and see how I was feeling on Wednesday. So I did. It wasn’t getting better. I couldn’t take it anymore.
So I went to the ED. Very good, quick experience. Upon ultrasound of my right upper abdomen, they found 2 gallstones in my common bile duct. Ugh. In a person that has their stomach they would just do an ERCP. Which is basically a scope through your mouth, they find your gallbladder and common bile duct and fish those stones out of there. Since I don’t have a stomach my anatomy is way different and makes this procedure much more complicated. So I immediately talked to my surgeon at the NIH. Upon very little thought and discussion we decided it was probably best for me just to fly out early and get this figured out. I was supposed to fly out Sunday, March 28 for my 2 year check up anyway. So Matt (my husband) and I just hustled and got everything ready to fly out Thursday morning. Got to the NIH around 7pm where they admitted me and did al the things they needed to do for me to be ready for an MRCP on Friday morning.
Immediately after the MRCP, the MRI tech informed me they needed me in preop right away. Since my husband wasn’t allowed in the hosptial with me, I was trying to coordinate with him and how to get in for the procedure and find out where he was. I guess he had been looking fore when I was in the MRCP and getting a bit anxious...understandably. I think at one point he thought I had gone to the OR already. So anyway, him and I met up in preop. Phew. Surgeon explained everything they were going to do in the OR and off and went.
Well, the procedure did not exactly go as planned. Those stones were being very stubborn so he had to reopen part of my old incision for the Lego a gastrectomy surgery. He tried for 2 hours before deciding to do so. Seriously, he’s the best. What other surgeon would have done that? In the end I think he was very disappointed in how everything went. He thought he got the stones out but didn’t actually visualize the stones leaving the bile duct. Did his best to confirm and closed me up.
I’m in the hospital post op and they are keeping very close eyes on my liver function. Some levels started to go up immediately after surgery. Then started to go down on Saturday. So we all felt a bit better about that, but decided it would be best to stay one more night. Sunday, I got discharged from the hosptial and stated the night in the hotel with Matt. We hadn’t physically seen each other for almost 48 hours. Weird for us. Haha. It was nice to take a shower in the nice hotel shower, wash my hair, be in a comfortable bed. All the things. I woke up this morning (Monday) feeling ready to take on the challenge of getting back to my hydration and eating routines. I needed to go back to the hosptial to get a DEXA scan (part of the yearly checkup) and get my liver labs checked one last time. So did those things, then just sat outside for over an hour enjoying the beautiful morning while I ate a little breakfast. Matt was doing work stuff (when he’s not there he still needs to run things from afar which is not easy for him - it can be very stressful at times). There we were just soaking in the morning. Then I get a call from the surgical fellow that my bilirubin levels spiked up higher than they been at all. My heart dropped. Does this mean they didn’t get the stone that was really stuck in there? Does this mean I need to have another surgery? What does this mean? She told me to come back and we’ll have a chat but that they were scheduling me for another MRCP to try to figure out what’s going on.
So we all (me, hubby, surgeon, and surgical fellow) all had a chat about all the possibilities and all the different plans depending on what the MRCP shows. So here I am waiting for the MRCP. But this definitely means we won’t be going home today. The kiddos don’t know yet and are going to be sooo disappointed and sad. I’m just going to have to explain to them this it’s for the best and we need to make sure mommy is all good to go before she goes home. That way I won’t have to get home and turn right back around to come out here. I hope I have the right words to help ease their concerns, anxieties, frustrations, and sadness when I talk to them a little later today.
So there’s an update with what’s going on. Writing this out actually helps me ton, both mentally and emotionally. Just taking the time to reflect on my experiences and appreciating the little things that make a big difference. Like that I didn’t get all the way back to the hotel and have to turn around right away to come back. Or that I have my amazing husband here with me who is now allowed to be inside with me today. Or that I have such amazing support system at home. Or that I have no stress about what I’m going to do about the kiddos. Or the house. Or the dogs. Or work. I can focus on what’s going on right now with me and take care of that. And that I was able to enjoy the cherry blossoms for a short time while waiting for the metro after landing in DC. And all the spring flowers that are popping up around Maryland this time of year.
Anyway, thank you all for staying tuned.
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