Tuesday, December 02, 2008

But What I Really Want to Say Is

I feel like I've been marking time here on the old blog for the past few weeks, trying to fill in the gaps with any old thing, just so there's something here. But there's a lot happening under the surface, and I finally feel like it's OK to share.

Some of you will remember that Jay was diagnosed with a liver disease called Primary Sclerosing Cholangitis back in 2001. PSC is an autoimmune disorder in which Jay's body attacks his liver, causing a buildup of scar tissue in the bile ducts. The scar tissue impedes the free flow of bile through the liver. Walter Peyton had PSC, although the ultimate cause of his death was cholangiocarcinoma, a type of cancer that occurs in patients with PSC. Jay's doctor used an ERCP to make the diagnosis. A bit of research showed that there was no known "cure" for the disease, but that there were some steps to slow its progression. The cure, in fact, is a liver transplant, but the time from diagnosis to a transplant varies from person to person. Jay's doctor at the time offered regular testing that would help us "stage" the disease.

When we moved to Jackson, Jay found a new doctor who suggested a colonoscopy. One of the risks of PSC is colon cancer, and many people with PSC also have some form of irritable bowel syndrome. The doctor wasn't happy with the state of Jay's colon and put him on a drug that has been shown to reduce the possibility of colon cancer. Roughly six weeks later I came home and noticed that the whites of Jay's eyes were actually yellow. My heart skipped a beat. Itching and jaundice indicate a buildup of bilirubin, which the liver is supposed to process into bile and excrete. The next day Jay called his doctor who told him to come in immediatley for labwork. His bilirubin level was 18 mg/dl. Normal is .20 mg/dl to 1.5 mg/dl. The doctor scheduled another ERCP right away.

The first time Jay had an ERCP, the surgeon placed a stent in his common bile duct to improve bile flow through the liver. The common bile duct leads from the liver to the small intestine. This time, the stent had fallen out, and the common bile duct was so strictured that the contrast dye wouldn't even go through. It kept siphoning off into the gall bladder. There was no way to even see what was happening inside the liver because they couldn't get there. After the procedure, the doctor used the word we had expected: Transplant.

It took four weeks, but Jay finally got an appointment with a specialist at Vanderbilt, and today was the day. The doctor looked at the films from the most recent ERCP and Jay's most recent round of bloodwork from late last week. He pointed out something that neither of us had considered: Jay's liver is actually still functioning in many ways. We've always looked at the numbers that are out of normal range without paying much attention to the numbers that are within normal range. So his liver's not great, but it's not failing completely.

The Vanderbilt doctor wants his own surgeon to do another ERCP. The surgeon has already looked at the films and thinks he might be able to open the common bile duct enough to get a stent in it, which will help the flow of bile and thus return Jay to a normal color. Being yellow is the least of his worries, but it really does make him look sick--probably sicker than he actually is. There's actually no immediate danger in the buildup of bile, but if left unchecked for a long time, it can become infectious and cause scarring of the actual liver tissue. They'll also do a CT scan to see what they can see. He'll follow up with the doctor a few times each year to see if things are progressing, and he'll get the joy of increased colon cancer vigilance - a yearly colonoscopy.

Not once did the doctor mention a transplant. He's going to look at the bloodwork done today to see if Jay's occasional fatigue is related to his illness or if there's something else going on. Of course, there are still the possibilities of colon cancer and cholangiocarcinoma (liver cancer), but since the doctor is going to follow Jay so closely, there's no reason to think that either of those things would progress too far before being caught. Big can of worms we're not even going to look at right now.

So, things aren't nearly as bad as we thought. Jay gets to keep his liver for now, there's hope that his color will return to normal after the next ERCP in a few weeks, and he's got a great doctor who is pretty clear about how to best manage the disease.

Your continued thoughts and prayers are appreciated. It's hard to remember when Jay is his normal pasty self and his energy is high (both of which will hopefully happen soon) that he has a chronic illness, but it lingers still and remains a source of concern for both of us. Prayers and thoughts of healing, hope, and courage to live boldly are always welcome.


FrSean said...

Gotcha covered on the prayer thing.
Wonderful news.

Blessings (and I hope you'll join us again for another singy service!)


Christine said...

And here I was, wondering why you haven't posted about your chickens more often!

Praying. Had no idea you guys were juggling this. Just figured the kids had you buried. :)

Praying. Did I mention that?

Rhonda said...

Of course prayers for you guys. I was so tempted to call today to see if you had any news yet and to see how everyone was holding up. Glad the news sounds up. Hope to see you guys Thursday for meet up.

martha said...


Jay - can I have a word with your liver? I'd like to straighten this thing out for once and for all.

I'm extremely authoritarian when I need to be, I think a little talky-to might do the trick.

Seriously - prayers and happy thoughts, delivered hourly.


Erica said...

Wow. Hang in there (this puts my morning of temper tantrums at work--the toddler's, not mine--into perspective)

Shannon C. said...

I am so sorry you guys are dealing with this! Please know there are tons of prayers headed your way.

When you get a second, would you email me at shannon at ledfordmedia dot com? I have a question for you.

Sewbig said...

Please know that our thoughts and prayers are with you. It sounds like you have found a great doctor. It can make a huge difference. Unfortunately, Jay's side of the family has its share of autoimmune issues, though I sometimes think the term becomes a catchall when they don't know how to classify something. Navigating the medical maze can be trying and tiring, but when you find the right doctor for you, it is worth it.

Aunt Beth