It’s a good thing you advocated

Since we got back from Houston, Zach was having intermittent pain so we had blood work done here in Connecticut to send the results to his liver surgeon to see if that would give us any clues to his pain.

The blood work didn’t give us any clues, so we waited a few more days to see if it would resolve. Unfortunately, it didn’t resolve on its own, so by Wednesday the 8th we decided it was time to go to the hospital.

When we arrived we were greeted by an ER doctor who felt a CT scan wasn’t necessary because his belly felt soft and he didn’t have a fever. I responded that we wanted to make sure everything was okay, so we want you to do the scan. He told us that he would prefer not to do a fishing expedition and didn’t think the exposure to radiation was called for. I told him that he should either be looking for a bile leak or a bowel obstruction — either one of those could cause major complications.

He told us he would do it if we wanted, and we both responded with, “YES we want a scan.”

The scan was done, and when the radiology report was finished he walked into the room and said, “I am humbled by this job every day.” The radiology report had 6 lines of possible issues: bile leak, abscess, etc. Due to the results, they requested a surgical consult.

A PA and a doctor lady (I don’t have much respect for the doctor lady) came in and asked us a ton of questions about how he was feeling and we also filled in his medical history gaps for them. In the meantime, I took a video of the CT scan from the computer to send to Zach’s liver surgeon, who was at a conference in Germany at that time so he could review it. His liver surgeon saw the scan and sent back a screenshot of where he wanted a drain placed so we could show the surgical consult people when they came back to chat with us.

The next thing we knew, a nurse came in and told us that he had a stool burden, gave him an enema, and then said they would be discharging us. I told her that couldn’t be the case because we still needed to finish the chat with the surgical team. The nurse looked confused and said that was what the doctor told her to do and she left. One of our friends works at this hospital, and she was so helpful in navigating this mess. She told the attending ER doctor to send the surgical team back down. “The lady doctor” came in and looked irritated that she was back. I told her that we wanted a drain placed on the recommendation of his liver surgeon. I showed her the photo he sent, along with his description of where it should be placed. She continued to argue that it wasn’t important, was going to make it worse, and that it was unnecessary. I told her she needed to take it back up to her attending surgeon and show him, I also told her that if she wanted the number of his liver surgeon’s PA she would be happy to explain why it was necessary. She told him nobody would need to talk with her. The lady doctor made her exit and Zach said, “She HATES you”. I shrugged my shoulders and said, “Who cares?”

About 30 minutes later, she comes back down and enters the room saying in a sing-song voice, “It’s a good thing you advocated. The attending surgeon consulted with a colleague and they think you should have the drain placed.”

I don’t think I can properly explain the amount of anger and frustration Zach and I experienced that day in the hospital. She left the room telling Zach he was lucky to have me. He then said, “She HATES you even more now that you were right.”

The next step was for him to be admitted to the hospital for an interventional radiologist to use CT imaging to place the drain. At this point, they wouldn’t give him any food in preparation for surgery, but since IR doesn’t work at night he was NPO (no food) at midnight. At this hospital, food service stops at 6:30 pm, so I asked if I could go get us food and come back. The ER nurse said yes, so I went and picked up food across the street and made my way back. He had been transferred up to his hospital room right before I got back and was told to check back in at the ER admission desk. I had let my guard down at this point thinking I wouldn’t need to fight anymore. Man, was I wrong.

The security guard called up to the 3rd floor saying that a patient's wife was there to bring him food. I was told that visiting hours ended at 8 pm and I wasn’t allowed to go up. That was my breaking point. My actual response was “That is fucking ridiculous.” I called Zach and he talked to a nurse and told her that I was waiting downstairs to be brought up. They sent a guy downstairs who looked past me and said to the security guard, “I was sent down here to get food for a patient”

I said, “Yes, I am here with food for my husband.” He reached out to grab the food and I said, “No, you are here to bring me up to the 3rd floor.” He responds with, “ I am not bringing you up — visiting hours ended almost an hour ago.”

Anger rose up inside of me, and I said, “You need to call someone who has the authority to bring me upstairs, because I am not leaving until I see my husband. He made the call, and I was “allowed” up. It was a quiet walk from the ER to the 3rd floor with him.

Fast-forward to the drain insertion…no one made notes about where the drain was to be placed, so I had to text the IR doctor the photo that Zach’s liver surgeon sent over. Then we got the pathology results back, and there was a start of an infection. If we didn’t have access to a doctor who cared, Zach would have been back in the ER days later with a much more severe infection or complications.

This was the most frustrating experience, because had we not had access to a doctor who cared, we wouldn’t have had the knowledge to “advocate”. This experience is why this website exists.

Unfortunately, the medical world requires you to advocate, and you have to muster up the courage to fight for what you think you need. YOU are the only one who is an expert on you. Zach felt like something was wrong, but wasn’t sure what it was and with the help of his liver surgeon, we were armed with the knowledge of what to ask for.

I have had to learn to be content with the discomfort of advocacy. I have had to become a person I don’t want to be to fight for quality healthcare for Zach.

Due to the drain being placed, they pushed the chemo scheduled on 11/13 to 11/20.