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Cholangiocarcinoma and the Fight for a Liver


2:00 in the morning, and I’m wide awake. Let me tell you something about myself… I very very rarely have issues sleeping. Like I can count on one hand the times that I haven’t been able to sleep through the night. I’m that person that will wake up, roll over, and go straight back to sleep. But tonight I’m wide awake.

Today was a rough day.

Hell, the last two weeks have been rough.

My husband is believed to have cancer. In the bile ducts. Which is the thing that we’ve feared the most over the last four years. And the worst part? They can’t even prove it with biopsies, because it’s that far into his bile ducts, and that hard to detect. Our saving grace was always, “if he gets cancer, as long as we catch it in time, we’ll be able to automatically get exception points on the transplant list, and that will move him up the list quickly.”

But we can’t even do that. I feel stuck. And afraid.

Two weeks ago, Reid had a Spyglass (ERCP) procedure because his Houston transplant team noticed a “dominant stricture” in his left bile duct that was concerning. After the procedure his doctor showed me pictures of the inside of his bile duct and said, “if you showed these images to 100 doctors who are experts in the Spyglass procedures, all 100 of them would say he has cancer.” 

Holy shit, I wasn’t expecting that. I mean, I was but I wasn’t.

We’ve known this was a possibility, and we’ve known that he was trending towards cholangiocarcinoma (bile duct cancer) - but wait - we’re here?? We waited a long week to hear that the biopsies and cytology report were both benign. Which sounds like great news, but the crazy thing is in this case we know it’s there but we really need that medical proof. So benign was not the word we wanted to hear. How could we wish for malignancies? Well, in an ideal world we wouldn’t. But we don’t live in an ideal world. Our doctor is a specialist in Primary Sclerosing Cholangitis (PSC – the condition that Reid has) and the Spyglass procedure… and he doesn’t mince words. He also doesn’t use scare tactics. So if he says the cancer is there, 9 times out of 10 he is right. But we need that proof.

We met with that same doctor yesterday, and his tone did not change. Actually, he clarified something that I misheard two weeks ago… not only does he truly believe he has cancer in his left bile duct, but it’s also in his right. He’s not surprised that the test results came back like they did, as this is common for this type of cancer to be detectable by a tiny microscopic lens, but not by biopsy. Frustrated, but not surprised. So, can he make an official cancer diagnosis without the test results? “No.” Can we go ahead and start seeing an oncologist? “No.” What should we do? “Exhaust every single option to get him a liver as soon as possible.”

His doctor said that it is only a matter of time before this becomes worse. He didn’t even go into what that would look like, because we already know. We’ve been preparing for this day, while also wishing and praying it would never come. This is no longer an “if”, but a “when”. And that when is now.

So where do we go from here? Well, I’ll tell you what we’re NOT going to do… we’re not going to sit around and watch cholangiocarcinoma take my 32-year old husband’s life. I refuse.

Reid is listed for a liver transplant in Houston as well as Indianapolis. In Houston, it will likely be a long time before he is able to get a liver, even if we get exception points. In Indianapolis, we are in the process of applying for exception points so he can be moved up the list.

Reid’s natural MELD (Model for End-stage Liver Disease) score is a 10. Which is very low… the MELD score does not accurately capture how sick a PSC patient is. We are praying for those exception points, but they aren’t certain to be given without malignancies showing, and even if they are given it may still be several months before he is able to have a transplant. We have an appointment with the transplant center in Atlanta (Emory) to get listed there as well, and would be applying for exception points with that center (yes, you have to apply at each center, even though it’s all one system).

We have discussed the living donor option as a “plan B” for Reid, but we’d be happy with a plan B at this point. Unfortunately, there isn’t a living donor program in Houston and I’m not sure when it will officially launch. There are programs in other cities (closest is Dallas), but that process could easily take 3-4 months from evaluation to transplant. Don’t get me wrong, we’re starting the process. But I hope that 3-4 months from now, he’s recovering from a liver transplant, not still waiting. And if you know anything about this process, that’s a huge request.

But I’m putting it out there. That is our end game.

If Reid can get a liver transplant, they will hopefully be able to remove all of the cancerous bile ducts and liver. And while we wouldn’t be out of the woods at that point, we’d be a whole hell of a lot closer. But if we wait too long, the cancer could spread and he could be taken off the list completely. 

So here’s our ideal situation… and I’m a little afraid to put it out there because I don’t wish this situation on anyone. The best case scenario that I can see in this moment is for Reid to get a “directed liver donation”. If anyone has a family member that is being kept on life support, or has suddenly passed, especially in the Houston area, they can directly donate their liver to Reid.

Gosh, that’s a heavy request. My heart breaks for anyone having to make that tough decision.

But that’s where we are right now, that’s the level of desperation I currently find myself in. Our support system constantly asks what they can do to help… well, here it is. We need everyone to share Reid’s story. You never know who could come across his story and find themselves in that terrible situation. That terrible situation that can be made just a tiny bit easier by saving the life of someone else.

So here’s the information that you need to know…
  • Reid’s blood type is A, so he could accept a liver from an A or an O (positive and negative doesn’t matter)
  • Reid is 6’8” and 200 pounds… so he likely couldn’t use a 5’2” woman’s liver (but he also doesn’t need a basketball player. Someone close to his weight and/or 5’9” or taller could work)
  • Information that would need to be shared with doctors as soon as the decision to donate is made:
    • Reid’s full name – Timothy Reid Gray
    • Our transplant center – Houston Methodist Hospital (Dr. Egwim)
  • We are in Houston currently, but may potentially be temporarily relocating to Indianapolis or Atlanta soon (I will update if we do)
  • Transplant center in Indianapolis is IU Health (Dr. Lacerda). Even though we are not living there now, if the person is on life support, they may still be able to do a directed donation and we could jump on the next flight out.

That’s it. 

As I type this, I’m filled with so many emotions and I have tears continually streaming down my face. I can’t believe we’re here. I’m scared, and frustrated, and anxious, and sad. But I am also hopeful. I have seen our support system show up and stand up and speak up in so many ways. I know they won’t fail us now. And I think that brings the most tears. We're just so thankful for you all, and know you will help us through.

Comments

  1. Hey Abby, we don't know each other, but I've been following your blog for a bit. I'd recommend getting in touch with the Cholangiocarcinoma Foundation (https://cholangiocarcinoma.org/the-cholangiocarcinoma-foundation/contact-us/). Coincidentally, my company (a healthcare data company) just partnered with CCF to give them lots of data on who all the docs are who see lots of cholangiocarcinoma patients, what docs are involved with clinical trials, etc. So they have all the latest info on exactly where to direct you to get the best care for Reid. The CCF and their staff are awesome and can help you find the best oncologists in Houston if you need to eventually go that route. Some of those cholangiocarcinoma docs are also really experienced in liver transplant, especially at MD Anderson, and have recently published on liver transplant in CC patients with some really promising results: https://www.ncbi.nlm.nih.gov/pubmed/29548617. Dr. Milind Javle is probably the top doc to see there (https://faculty.mdanderson.org/profiles/milind_javle.html). Good luck with everything, and hoping you can get a liver for Reid soon.

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    Replies
    1. One other thing to add--the CCF will also probably *highly* recommend genetic testing for the tumor, as >50% of CC patients have mutations that currently available treatments could potentially target. There are some great success stories of patients getting treatments that matched their mutation and doing well after that. That should give you even more hope!

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    2. Thank you so much for the information! That is super helpful, and I will definitely check it out!

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    3. Hi again :) Saw some folks in passing today from the Cholangiocarcinoma Foundation and casually asked about liver transplant for CC patients. Stacy, their President, mentioned that Dr. Gores at Mayo oversees their liver transplant program, and that he'll reply if patients email him. She said he'd be great for talking through how best to get a liver, and he also treats CC patients. Might be worth reaching out, hope he can be helpful to you.

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