No Stomach No Problem? Really??

I really should have updated this on Monday. I’m so sorry I didn’t. 

After the MRCP I immediately met with my Dr. He could see what looked like to be a stone in the common bile duct. The only real option for somebody without a stomach is to have another surgery to get it out.  He reached out to some of his GI friends who do ERCPs everyday and they said ‘there is no way, that is extremely technical because of the anatomy’.  We talked for a while with him and felt a bit of a relief.  We know what’s going on. We know how to fix it. So I got on the OR schedule for Tuesday morning.  And Dr Davis said I could stay the night in the hotel as long as I was back at 7am. Which made me extremely happy. Matt and I walked back to the hotel - it’s about one and half miles. The weather was beautiful.  We got to see all sorts of flowers blooming and like I said I felt like a weight had lifted off my shoulders.  Got to the hotel, ate some dinner, took a nice shower, and went to bed. Sleep very well. Woke up before my alarm, which never happens by the way 🤣.  And was ready to go. Packed up all my stuff prepared for another night stay in the hospital. 

We got through preop farely quickly and off to the OR I went.  This procedure was anticipated to only take about 30 mins.

As I was slowly waking up in PACU I start comprehending what people are saying a little more.  I hear somebody tell me I have a foley catheter.  Then somebody mentions a drain.  As most of you know, waking up from anesthesia can be a bit of a blur. I don’t know how or when I learned the surgery took 3 1/2 hours.  Or that I will go home with the JP.  The stone was nowhere to be found....again.  So my surgeon decided to do something to prevent a stone from getting stuck in the bile duct again. So we wouldn’t be doing this again in the near future.  Thank goodness!  I’m so grateful he made some decisions while in there to be proactive and not just decide to close me up.  

But what I do remember is a feeling of overwhelming despair.  Not that surgery didn’t go as planned. Not that I would need to go home with a drain.  Not about anything from today. An overwhelming despair that this is my life. And feeling like my life will forever be a medical mystery and there’s nothing I can do about it.  I described it to Matt, my mom and my Dr that it felt like I was in a downward spiral of a tunnel that just kept getting faster and faster and there was no way out. And the rest of my life was going to be this way.  In and out of the hosptial.  Always needing surgeries.  Not feeling how I want to feel - healthy!  I feel like normally I’m a pretty optimistic person and always looking for the good and positive in things. But last night I didn’t give a SHIT.  I know I said many things that scared and worried many people.  I told my Dr that I not mad at him or how surgery went. And I’m not. Everything he did while in there was thorough and understandable.  The stone was nowhere to be found....again.  So my surgeon decided to do something to prevent a stone from getting stuck in the bile duct again. So we wouldn’t be doing this again in the near future.  It all makes sense to me.  I told him I am mad at the world.  I told him he should be glad he wasn’t present 2 hours earlier when I was really steamed up. Matt, in his very rational mind, kept reminding me I just to sleep.  Dr Davis asked me if I wanted some Ativan to take the edge off emotionally overnight. I told him I didn’t. I said I need to work through all these emotions now while I’m having them since I can now (being here and not having much to do - well, other than heal up and all that’s involved with that). Better to deal with it all here than when I get back home and I’m with my wonderful kiddos.  He asked ‘are you sure? with an eyebrow raise.  I know he was worried about me too. When he left the room I took Matts advice and I slept.  I have no idea how long, but I know he sat in my room with me the entire time.  I have to add, in my fit of rage and despair, he really stepped up.  In ways I’ve never seen him have to do before.  In the moment I told him he was bossy, but I know he was doing and saying all the right things to help me.  

So after a good rest, I woke up more rational and feeling like everything is going to be okay.  I cried. I mean I’ve cried a lot. And that is okay. I was determined to let myself feel all the feels no matter what they were.  I’m still crying a bit this evening.  The sadness is not going to disappear in an instant. But I have really improved today. I got a REALLY good nights rest thanks to an amazing nurse. You can still be a thorough night nurse with good patient care and allow your patients to rest.  I woke up this morning still feeling pretty down and unmotivated. They forced me out of bed at 7am.  Sat in a chair for a few hours before doing much else. Several people, but mostly my mom and husband really pushed me. They told me ‘you know what you need to do to get out of there’. At the moment I didn’t even care. I didn’t care to get out of here. I would find myself just staring into space at times.  There was also a provider (one who actually kind of knows me by now) who came in to check on my pain and realized I wasn’t okay. He sat down with me. He took the extra 3 minutes to have a chat and be real. And he had many good suggestions. Acupuncture.  Massage therapy.  Guided imagery.  He asked if I was interested and I said absolutely but that I know their schedules are hard to work around. He said ‘it doesn’t matter.  I’m going there right now to light a fire’. And he did. Within 30 mins more people showed up at my door. Including a kind of counselor person. She sat and talked for about an hour with me.  It has been so validating to feel heard. Not one person tried to brush off how I was feeling. Not one. Every single person I’ve encountered today has let me feel my feeling. Has let me cry.  And because of that has given me hope.  I was never worried about healing physically.  I was extremely worried and still am a little about healing mentally and emotionally.  

But it’s nearing the end of the day here and I feel accomplished. I’m so many ways.  I went from not caring about much this morning. I mean, I had a foley and didn’t care. Yuck. To now being ready to say goodbye to the PCA and hello to oral pain meds. So hopefully tomorrow I can be discharged and stay the night in the hotel again with Matt.  I gotten lots of walking in today. My appetite is coming back to I’ve eaten a good amount. I’m still working on hydrating, but we can’t do everything at once, right. Glad I have IV fluids still. Haha. 

So just to wrap this up. Anybody going through a rough time. It’s okay. Let yourself feel all the feels. And if that becomes to much don’t be afraid to reach out to somebody. Anybody.  I know the best medicine for me right now is walking, talking to my family, laughing, and being able to at least see the outdoors.  But sometimes we need actual drugs to help us. And that’s okay too. Everybody is on their own journey. And we are all doing the very best we can. Let’s give ourselves grace and kindness...everyday.  ♥️

Big Updates

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.