Wednesday, February 22, 2012

Peace in the Valley

For most of the day Saturday, Sunday, and Monday I was in a fog. I took my kids to the Mardi Gras Parade on Saturday morning and spent most of my time there in a daze. I got it together a little more to go see The Secret World of Arriety with sweet friends, although I was glad to lose myself in a movie. And I got to see my girl Olivia play basketball between the movie and dinner, which was awesome. By Sunday I was a little more with it, and Monday was even better, although I was still searching for words and not quite coherent. Jay slept most of the day on Saturday, entertained kids on Sunday while I was working, and seemed to be well on Monday. We didn't do much talking about heavy stuff--just poked around on the TV trying to find mindless entertainment.

But by Monday I was peaceful. Last Fall I went to the hospital be with a church family, a member of which was undergoing major surgery. I remember so vividly what was said: "I know that people must be praying for us. I know because there's no other reason for me to have felt such peace throughout this whole process."

Those words have stuck with me, and they define exactly how I have felt for the past few days. I have been at peace. And I think back over how many FB messages I have received, how many emails I've received, and I realize that there is this indescribable peace in knowing that so many people care so deeply.

We have read every message, every comment on status updates, every e-mail, but don't really know if we can ever express how powerful your words have been to us, how tightly we have clung to them, or how they have helped us to hang on. Please know that every single word you have shared with us has made a profound difference on our journey. We will never be able to express how much. Or how humbled we are that so many people care. It is truly overwhelming.

We aren't through yet, but the road seems to be rising to meet us.

Tuesday, February 21, 2012

Blogging from Vandy, Day 4

Today was pretty much nothing, except for an interesting abdominal ultrasound. Well, it was pretty much nothing because I wasn't the one who had to be injected with dye for a DEXA scan. Instead, I just did a little stress eating...a bagel with cream cheese at my dad's house, a bowl of oatmeal at the hospital, and huevos rancheros at Fido.

When we escaped from the hospital between injection and scan, we also managed to go shopping at A Thousand Faces. I could have maxed out a credit card there. Note: If Jay gets this transplant, it would behoove you to take a shift taking care of my kids. You WILL get gifts from this store. And you will like them.

After all that mess was over we went back to see nurse Jennie and give her a hug. She took pictures...one of Jay for his chart, and one of the two of us because she likes us.

Then we got the heck out. We stopped at Kien Giang for bun and tore home as fast as we could get there. Gina brought Scott's BBQ for dinner and it was lovely.

And now we wait.

Blogging from Vandy, Day 3 (Part 3)

After this morning's dose of reality with the surgeon Jay had blood drawn for testing, and then we moved on to Endoscopy. It was much quicker than I thought. I dropped him off, went to get something to eat, and had just settled down with my computer when I got called back to recovery. Jay was dopey on Versed but stayed quiet while I talked to Jay's heptatologist (who had also done the Endoscopy).

Regarding staying quiet: Jay gets chatty on Versed and often interrupts me when I'm talking to the doctor, asking the same question over and over again, or fussing at me if I ask a question that he thinks he already knows the answer to. But he was good and remained quiet. I think he was actually still asleep for part of it, but that's OK. He started chatting when we got into the car, micromanaging my driving and such, and he even had a conversation with the doctor over the phone that he doesn't remember. But enough about Jay and Versed.

The hepatologist said that he let Jay look at the scope before knocking him out, and he even took pictures so that Jay could look at his insides. Jay has some ulcers on his stomach, which the hepatologist biopsied to see if they might be an infection that could be treated with an antibiotic. He still has esophageal varices, but that's nothing new.

I had a good heart-to-heart with the doctor about what the surgeon saw on the CT scan, and the doctor was pretty certain that the spots that concerned the surgeon wouldn't be anything that would keep Jay off of the transplant list.

What he said was this: Cholangiocarcinoma is always a risk with PSC patients. There is no way to know for certain whether he has cholangiocarcinoma until he's actually on the table and ready for the transplant. Not even a needle biopsy can give them that information. So I have a feeling that the hepatologist is going to go to bat for Jay and remind those making the ultimate decision that there is always a risk and that Jay is no different.

Phew. But wouldn't it be nice to be home free? Wouldn't it be nice not to have the risk of Jay getting ready to be transplanted and then the surgeon discovering that he has tumors and can't be transplanted. Blech.

We were going to go to a movie. Instead we went home and took really long naps.

Monday, February 20, 2012

Blogging from Vandy, Day 3 (Part 2)

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.

Blogging from Vandy, Day 3

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

Blogging from Vandy, Day 2

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

Blogging from Vandy, Day 1 (Part 2)

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.

Blogging from Vandy, Day 1

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.

Sunday, February 12, 2012

Cursed

Tonight one of our youth families hosted the youth group at their home. It was a great night with lots of laughter and relaxation and catching up and generally enjoying one another's company. The guys went upstairs to the man cave and watched "The Adjustment Bureau" while the girls hung out downstairs and watched "The Art of Getting By."

It was a good enough movie and kept our interest, and we were definitely all on the edge of our collective seat by the end. But it was in the middle of the movie that I realized my new curse. I don't know that I will ever be able to listen to a song or watch a movie without thinking about how it will
influence or effect an adolescent.

All through the movie--when I wasn't whispering to myself, "Please don't have sex. Please don't have sex. What am I going to say to these parents if there's sex in this movie?"--I was thinking, Where is redemption in this movie? What is life-giving here? What gives the characters value in the film? What does this say about who we are and about our inherent worth?

And then I see Katy Perry in that outfit on the Grammys and I wonder about the messages that teenage girls receive about what bodies are supposed look like and how we're supposed to treat those bodies as temples.

I know I sound like a total prude and like I'll never be able to enjoy a song or a movie again, but I guess I'm cursed with forever listening and watching through the lens of the messages communicated to adolescents.

Woe is me.