Wednesday, February 22, 2012
Tuesday, February 21, 2012
Monday, February 20, 2012
Here’s some more of the dose of reality from the surgeon:
- Because of Jay’s portal hypertension, he’s at a great risk for excessive bleeding during surgery.
- He might die in surgery (I mean, I might die while he’s in surgery, too, but transplanting an organ increases that risk significantly).
- He is also at an increased risk after surgery for Secondary Sclerosing Cholangitis (his actual diagnosis is Primary Sclerosing Cholangitis). This would require a retransplant in the weeks or months after the original transplant. It occurs because it’s difficult to attach the donor Common Bile Duct to the recipient Common Bile Duct. It’s even more complicated with Jay because his Common Bile Duct is already a piece of junk anyway, so they may have to create a whole new CBD for him (Roux-en-Y). So a regular old liver transplant patient (without Jay’s diagnosis of PSC) is automatically at risk for essentially what Jay has already. That’s a little disconcerting.
Jay’s liver is cirrhotic (his liver tissue is breaking down) as a result of the damage that PSC has been doing for the last 10 years to his bile ducts. So the transplant is more complicated for him than it would be for someone who had pickled their liver with alcohol (because in that case, the damage to the liver would only be to the tissue).
This is the first time that little tidbit has ever occurred to me. I think I’m glad I hadn’t considered it before.
We’ll see what the Endoscopy holds.
Today should have been called “Where We Smack you in the Face with Reality.” Everyone so far has been gentle and positive and upbeat, so we were just expecting more of the same out of this day. We woke up and got here at a reasonable time, got some cash (I’m not sure why. Jay just said we needed to stop at the ATM), got me some coffee, and headed to the clinic.
Our first encounter was the Jennie, another awesome nurse (they’ve all been awesome…I thought I should point that out), whom we later found out also lived in Lancaster, CA while working for the aircraft industry. She was totally precious and reassuring. Then we met with a Resident who works with the surgeon, and he did a “talky” exam as well as a physical exam. And then the surgeon came in. He was wearing a bow tie, so we clearly liked him right off the bat, and we were expecting that he and his bow tie were going to give us the happy face like everyone else has.
And then he told us that he saw some things he didn’t like from Tuesday’s CT scan…the possibility of bile duct tumors (cholangiocarcinoma, cf. Walter Payton). The good news is that the radiologist wasn’t concerned and Jay’s tumor markers have never been of concern, but the surgeon wants to meet with a whole slew of people next Tuesday afternoon to talk more about it.
Don’t get me wrong. The surgeon was awesome, but he also doesn’t need to be putting a liver into a patient for whom transplant is contraindicated. That’s not fair to anyone. There are protocols for treatment of PSC with cholangiocarcinoma, and we know a little bit about those, but we’re not there yet (and hopefully won’t be).
So we should know next Tuesday evening about what the pile of experts say about the possibility of tumors (the indicators that concern the surgeon are a brighter section of the liver on the CT scan and the atrophy of the left lobe of the liver). He wasn’t willing to blow any sunshine for us, which is a blessing and a curse, I guess. I just sort of kept making grunty noises in response because there wasn’t much else to do. Crap.
Sunday, February 19, 2012
Today was a pretty easy one, well, for me at least.
We spent the morning in the Heart and Vascular Institute where Jay had an EKG, and echocardiogram, and a Thallium Stress Test. Most of the stress test required waiting, so I wrote a paper for school and read, and then one of my best friends ever came up to visit us. Ashley and I caught up for awhile, and then he prayed before we all went our separate ways. It was a pretty low-key morning, and we topped it off with a visit to the Social Worker who, like many of the other interviewers, didn’t have too much to say that we didn’t already know.
We went back to my dad’s house and Jay finally ate while I went for a run. Then we put on our goin’ out clothes and joined our friends Jason and Mary for an epic dinner at Sunset Grill. We enjoyed three hours worth of dining and visiting, and then continued at their house. It was a long night, but well worth the time it took to laugh and enjoy.
The kids called during dinner. My undeservedly amazing friends took care of them tonight during church and Grandpa picked them up afterwards. It’s impossible to overstate how grateful I am for my church family…I had a few moments of (what I consider to be) normal parental anxiety because this afternoon involved a lot of moving parts on the homefront, but then that went away. My village takes care of my people in ways that humble me and make me wonder what I did to deserve being surrounded my such amazing friends.
Tomorrow seems pretty easy as well. An interview with the tranplant surgeon and an Endoscopy for Jay.
Saturday, February 18, 2012
I should have mentioned that my kids called this morning to wish us a happy Valentine’s Day. That was awesome. What was even more awesome was that it was 7:00 and everyone was ready for school. We’re going to ask if Jay’s dad would like a job as a nanny. He’s doing better by himself than we do with two of us.
The next appointment was with the dietitian. Did you know that’s spelled with a t and not a c? I didn’t. She noticed, but I don’t think she judged. At least I hope she didn’t.
Anyway, the best news that she gave us was that we’re doing just about everything right. The best news for Jay was that his peripheral edema is not caused by anything he’s doing wrong. For the past month he’s been maddeningly intentional about keeping his daily sodium intake under 500mg, but it hasn’t had any effect on his swollen feet and ankles. She assured him that such was life with liver disease and that he could stop working so hard at reducing sodium. That made Jay feel better, even if she did add the caveat that “it’s only going to get worse.” Sometimes that’s a good thing to hear, actually, because it gives permission just to let it happen instead of trying so hard to control it. She also said that decreased muscle mass is normal as well, which was also a bit of a relief. Jay can stop worrying about it and just look forward to regaining it later.
Pulmonary function test was next. It was pretty simple and fun to watch. I’ve posted the video on Facebook if you want to see it. She said he did well. I wouldn’t know, but I believe her. She was nice.
After that we hit SatCo for lunch and then went to see my mom at her office.
Our fourth appointment was a CT Triple Phase to see if Jay has any tumors on his liver. We hope the answer is no, because liver tumors would be a game-changer. Fortunately, Jay didn’t hear any horrified gasps from the tech, so we’re considering that promising.
Actually the fourth appointment was scheduled to be the CT scan, but we had to ditch it after waiting an hour so that we could see the psychiatric nurse. She judged Jay to be “squeaky clean” (as in, she doesn’t need to worry about hooking him up with drug and alcohol counseling), asked some questions about coping skills, and sent us on our merry way.
We went back to Radiology for the CT scan and it was completed almost right away, which was nice since Jay had been outfitted with an IV on our first trip and sported it during the psychiatry appointment. We were out of there by 5:30. We were so wiped we barely remembered dropping off the 24-hour “jug o’ urine” at 8:30 this morning.
Dinner was steaks, baked potatoes and asparagus with my first (my dad) and current (Jay) Valentines and we’re not far from bed.
Tomorrow is heart day. Thallium stress test, EKG, echocardiogram, and social worker. We’ll be topping off this day with dinner at the Sunset Grill. And then we’ll be halfway finished.
I’ll get in trouble for this, but Jay was not a very nice Valentine this morning. He eventually got around to apologizing and explaining that he was nervous about getting to our first appointment on time and about all that was scheduled to happen today. But once we were on the road and past the traffic, we were much more congenial to one another and both more fit to live with.
Our first stop was with the Nurse Practitioner. We were both a little surprised to see that we would be meeting with another couple at the same time, and I think we were both pretty surprised at how much information we gleaned from this meeting. This blessed woman was nothing if not thorough. We talked about what would be happening during the next week, what would happen while Jay was waiting for a liver, and what would happen after the transplant. Here’s some of the most interesting information:
- We will know by next Thursday (yes, February 23) whether Jay will be added to the list. The other options would be denial and deferral. The NP said that they rarely deny anyone, but if they did it would be because the candidate would likely not be able to survive the surgery. Deferral would occur if further testing was required, or if the candidate didn’t have sufficient social support. When the NP told us that we would know by next Thursday I felt sick to my stomach. It just all became very real very quickly.
- Once an organ is available, we will have about six hours to get to the hospital. The two things they’ll look for in making a match are blood type and donor size. Some folks have asked about tissue typing. There won’t be any tissue typing for a liver transplant. Once we get there and Jay is ready for surgery, there’s still a chance that the transplant won’t happen. If the procuring doctor sees that the liver is unhealthy, or if the liver biopsy (which is done on every donor liver) comes back showing problems, the whole shebang will be called off and Jay will resume his previous spot on the transplant list. In the business, this is called a “dry run.”
- The surgery will take about 4-8 hours, then Jay will spend a few days in SICU, and then a few more days in a step-down unit. After that, he’ll have to stay in Nashville for a few more weeks until the doctor tells him that he can return to Jackson. The reason he has to stay close by is that they will need to do labs several times per week, and they’ll have to be able to get those lab results in the same day.
- Even though organ rejection is a possibility, it can be treated with medication. This was a relief to us since we both assumed that rejection could only be treated with a repeat transplant.
- Jay’s place on the transplant list will be determined by his MELD score, NOT by time waiting on the list. The higher your score, the higher your place on the list. While it seems brutal, it ensures that the sickest people get livers first. When you’re sick, this is actually good news.
· Do we know how long he’ll have to wait? Nope. Could be the next day. Could be the next year.
And that was just one appointment! I’ll tell you about the rest later.