Reid's health - Hospital stay #2

When I started writing this blog, it was dedicated to one topic – infertility and pregnancy loss. I guess that’s two topics, but very closely related. I did not think the type of miracle I would be impatiently waiting for would change. We now need a miracle for my husband, Reid. A month ago I shared that we were in the hospital and he had cholangitis. At that time, we knew that it meant his Primary Sclerosing Cholangitis (PSC) – an inflammation of the bile ducts in his liver – was progressing. But we weren’t sure by how much. So we had follow up appointments and procedures scheduled with his doctors. Next Tuesday he was set to go have a Spyglass procedure so we could see where he was. He had been feeling significantly better after his last hospital stay, and we thought things were looking much better.

Early Wednesday morning he woke me around 3 a.m. with liver pains (yes, unfortunately he actually knows what liver pains feel like). We decided to come into the ER, given his last situation and the fact that the pain progressed quickly and got very severe. We assumed the cholangitis was back, as it was the same symptoms. They admitted him, and his doctor came in to see him just before lunch on Wednesday.  From that point forward, we have received bad news after bad news. I’ll bullet-point it for you, because it’s a little easier to understand that way, I think.  

Conversation with the doctor on Wednesday morning:

• The bile ducts must be so constricted that the antibiotics were not able to get in to attack all of the infection last time.
• He would need a Spyglass procedure (which he would schedule for the following day) to go in and stretch the bile ducts to allow the antibiotics to get all of the infection, and he’d take biopsies and pictures while in there to see how far the disease has progressed.
• He would like us to start talking with the liver transplant specialist, to learn about the process.
• A couple things to note with PSC and liver transplants:
• He has to have a full liver transplant. He cannot have a living donor. This is because the issue is in the bile ducts, which feed into the liver. There’s no way to take that part from a living person. (thank you for all that have offered to get tested, but I don’t think you want to be in the situation where he can take your liver)
• In the US, they don’t see PSC patients as a high priority on the transplant list. Because the disease is with the bile ducts in the liver, the bile ducts may be fully blocked, but the liver not be completely damaged. The blocked bile ducts will cause the liver to slowly fail. Therefore, it will probably take a while to get a liver because he’s not a high priority. And they won’t very easily put him on the list.
• He stated that at this point, it’s not if but when he develops cancer.

Yeah, that sucked.

They had a hard time managing Reid’s pain level on Wednesday, but finally got it under control by Thursday morning. Thursday morning he went in for the Spyglass procedure. Usually this procedure takes 30-40 minutes (this is his 4^th – we know the drill very well). He was in the procedure for almost 2 hours. I knew it couldn’t be good. The doctor finally came and called me back. We have seen this doctor a lot over the last 3 years. So I know when he has good news and when he has bad news. It was bad news. The worst news he has ever delivered to me. Here’s what he said:

• The PSC had significantly progressed. It was definitely worse than what he expected to see.
• He drew me a picture of his bile ducts, and then started scribbling all down the middle of them and said, “this is what his bile ducts look like. They’re very very blocked.” He spent a good amount of the 2 hours in the exam room just trying to stretch the bile ducts, and get the scope through.
• He took biopsies from 2 different places in the bile ducts, where he saw the most scar tissue.
• He gave me the phone number of the liver transplant specialist and asked that I call today to make an appointment. He said it may still take 3-4 months to get on the list, so time was of the essence.
• I asked about his remark regarding cancer the day before. He stared straight into my eyes with a very serious  face and said, “let me put it this way… there is a 90+, 90+, percent chance that he will develop cancer”
• The cancer that he is most likely to develop at this point is bile duct cancer. Which is very aggressive, hard to treat, and is one of the 5 deadliest cancers.
• I then asked, if he gets cancer before he has a liver transplant, will they still do the transplant? No. Not in Texas.

So, not a good report. At all. I tried to contain my tears as I was talking to him and stay focused on asking as many questions as I can. I knew that both Reid and his parents would have all sorts of questions, and I wanted to make sure I covered them. The doctor told me he would come by Reid’s hospital room the next day, so he could answer any additional questions and talk to Reid directly.

By this point, Reid was in the post-op recovery room behind me. He was still very groggy, and wouldn’t open his eyes. The nurse told me that I could ask our family to go back up to the room, and that it would still be about 30 minutes. She obviously didn’t realize the news I had just been given. I wasn’t going to send his parents and my mom up to the room to wait 30+ more minutes, and then find out the news in front of Reid. I decided to run out to the consultation room they were in and give them an update. I stopped just short of the room and tried to collect myself. It didn’t work. I walked into the room and just burst into tears. I shared with them the news I had just received. Of course it was heartbreaking to hear, and heartbreaking to repeat. There was no good news. I left them and went back to Reid waking up. As soon as he was with it, he asked for the doctor’s report. I think he could see it on my face, as much as I tried to hide it. So I shared the news with him.

I’ll leave the rest to your imagination, because as you can imagine it was a hard afternoon.

We are having a hard time dealing with this difficult news. We’re 31 years old. Have this conversation with us at 71, and we won’t be super shocked about a failing liver and very very high chance of cancer. But at 31, we should be focusing on our marriage, having kids (oh yeah, I can’t even let my head go there right now), and enjoying our lives. Not visiting the hospital monthly, which is what the doctor expects to happen until he has a liver transplant or gets cancer. And cancer. I don’t even know where to start there. I don’t even want to think about that part. But how many times have you heard someone has a 90+ percent chance of cancer?! Those are TERRIBLE odds. We are now in a race to get a new liver before he gets cancer. But the chances of that happening aren't great. It's a Catch-22.  

So we need our support system, now more than ever. This makes all the other stuff we’ve been going through seem like a walk in the park. This is news that will literally take the wind out of you and leave you speechless.