Oops. I Spoke Too Soon

The full report on my biopsy is in. There's good news and bad news. The good news: As I noted in my last post, the fat in my liver has virtually disappeared. The bad news: Everything else.

In biopsies, liver condition is measured by grade (the extent of the disease or inflamation) and stage (amount of fibrosis, or scarring). In June 2010 my liver was grade 3 (on a scale from 0 - 9) and stage 3 (on a scale of 0 - 6). Note: Stage is commonly measured on a scale of 0 - 4; my transplant center uses a different scale.

Now, my liver is grade 9 (!) and stage 4. This sucks. A lot.

I'm having a little trouble coming to terms with this news. I'm scared. And I'm fresh out of suck-it-up. But in a day or two I'll feel better and can start working on the next thing, which apparently is IL-28 phenotype, whatever that is.

Photo by Julia Freeman-Woolpert

At Last! Biopsy Results that Seem Promising

Last week I had my third liver biopsy in seven months (for those who are unfamiliar, this number is well above average). The past two showed troubling results and I'm greatly relieved to receive better news this time around.

Regarding the presence of fat in my liver, I quote: "GONE :)"

That sigh of relief you heard was mine!

My liver biopsy in June 2010 showed 80 percent - 80%! - fat in my liver, which is very unhealthy and also is an inidcator of metabolic syndrome. My docs told me to lose weight and control my blood sugar better, and I did. Even hampered by the steroids I had to take after my rejection episode, which made it very tough to follow doctors' orders, I was able to keep off the weight I initially lost (the blood sugar was beyond my control, however). Nonetheless, it worked!

The lessons: Follow doctor's orders. Hope for the best and stay as positive as possible. Don't give up.

Image courtesy of DiabetesMonitor.com

Three Years After My Liver Transplant, Where Can I Find Information?

Jaundice. Rejection episode. Oy!

Here's the diagnosis:

Liver with mixed portal and lobular inflammation, bile duct damage, parenchymal collapse, endotheliitis, steatosis, cholestasis

I won't bother to add the detailed "Comment" because it will only further confuse us all. A few days ago I received a copy of the pathology report on the liver biopsy I had last Monday. I'm no doctor, but usually I can find definitions for the terms I don't know and then cobble together some glimmer of understanding. We'll know more when I have bloodwork done Tuesday.

I continue to have trouble finding information about transplant-related illness and complications that crop up more than a year or so after liver transplantation. Statistics about one-, three- and five-year survival rates are readily available, but not much else. I'm determined to continue to search and share. Please leave a comment if you have experiences or knowledge to lend to the rest of us.

Photo by John De Boer

Sorting it Out

We've entered new and mysterious territory. Preliminary results from Monday's biopsy lead my docs to believe that I'm having a rejection episode. That said, there was a great deal of inflamation and they are waiting for the detailed report they'll receive tomorrow to know better what's happening.

Jaundice is most definitely at play. My eyes seemed a bit clearer Monday and yesterday, but are very yellow again today. A quick liver panel done Monday showed my bilirubin had increased to 11.8 - quite a jump from 7.8 last Thursday.

Current protocol: Steroids. Visiting nurse administered them via IV yesterday and today. Tomorrow I switch to pills. Also hoping for more feedback tomorrow based on detailed lab results.

I'll post more as I learn more. I can't find anything on this topic online, at least as it relates to a timetable this far after transplantation. If anyone else needs the info I hope to help them find it here.

Photo from Cleveland Clinic Journal of Medicine, October 2009

Deja Vu, The Bad Kind

Jaundice. I have it again. Yellow eyes and intensely yellow urine. These symptoms correlate with the unbelievably bad results of the blood tests that were drawn Thursday. AST is 1512 (normal range is 0-40). ALT (also 0-40) is 812. Total bilirubin (0-1.2) is 7.8.

This bucket of bad news elicited an "Oh, my God!" and a "What the f*#@!," then quickly transitioned into tears. Jaundice is something you get BEFORE your transplant, not almost four years afterward. I'm especially unnerved by this turn of events - of all the challenges, issues and health problems I've juggled since my transplant, this is the first time I'm dealing with a condition I had before it. Does this mean my new liver is toast?

I'm more worried than I've been in ages. Monday I'm having a liver biopsy (my second in 10 weeks). After that we'll learn more and deal with it then.

God, thank you for giving me time to get my son settled into his freshman year of college before having this fall into my lap. Dealing with both at once might have pushed me over the edge. Oh - and God, please help me find some grace and peace of mind. Amen.

Photo by Kenn W. Kiser, morgueFile.com

Liver Numbers Continue to Rise; Next Stop - Another Liver Biopsy

Yesterday's lab work results weren't so great. Liver enzymes, GGT and alkaline phosphate rose again. A liver biopsy is the next step in trying to sort out what's happening. So next week I'm off to my transplant center for what has become a familiar routine. And this rollercoaster ride continues...

Photo by clix (Brazil)

Still Riding the Hep C Rollercoaster

In May 2006 I learned that Hep C had damaged my liver so badly that I needed a liver transplant. Thus began my rollercoaster ride, which begat this blog. And that ride continues ...

In January I started treatment on pegylated Interferon and Ribasphere and last month, at the 12-week mark, we learned the treatment hadn't cleared the Hep C virus from my system. In other words, it didn't work. It was no surprise to us: After all, the treatment didn't work 2 1/2 years ago (seven months after my transplant) when I was placed on it.

But there was a bright spot in the results - my liver enzymes, Alkaline and GGT all had dropped significantly and this was news to celebrate. In spite of research indicating no benefit from staying on treatment for "maintenance therapy," we decided I would continue on it because of the improved impact on my bloodwork. However ...

My last three sets of blood test results show a steady rise in liver functions. AST and ALT are closing in on 200 and GGT is 519! What the hell?!

This is virgin territory. It never occurred to me that the numbers might increase while I'm on treatment. Candidly, I'm not comfortable in this realm of the unknown.

Next step: Repeat basic labs in just over a week, along with PT-INR and Hep C viral load count. Depending on what those results show, my doc may order a liver biopsy sooner than later. And I'll keep riding the rollercoaster, hanging on for dear life.

Photo by Lars Sundstrom

The Best Bad News I Ever Received

What a relief!

My recent liver biopsy revealed a bit more fibrosis and more inflamation, due to the Hepatitis C. But that was all. I was expecting FAR worse results... and as it turns out, so was my transplant coordinator. We exhaled audibly and collectively, and had many things to be grateful for this Thanksgiving.

For me and my doc, the objective continues to be to keep this liver as healthy as possible while we await a cure. So two days ago my husband and I returned to the transplant center and met with the woman who oversees liver treatment for Hep C, and after thoughtful discussion, we agreed that I will try Interferon/Ribavirin treatment again. When I took the meds two years ago, starting just eight months after my transplant, it didn't "clear the virus" (I continued to have a measurable Hep C viral load). While the chance of success this time is low, it's the only alternative available to me.

I'll be on treatment for 12 weeks, the length of time during which my viral load should either drop SIGNIFICANTLY or, essentially, be undetectable. If the pegulated Interferon treatment doesn't work, I can try a more aggressive treatment that requires Interferon injections daily (instead of weekly, as in the pegulated protocol). I'm going to do some homework on these options and I'll post what I learn, so watch for more information.

Next year could be fairly rough, because the pegulated Interferon has many side effects (flu-like symptoms): the more aggressive treatment stands to be pretty miserable. But I'm ready to fight the good fight. (Please remind me of this when I moan and wail five months from now.)

January 19 is the target date, when I take my first injection. Fingers crossed, knees bent in prayer. Please, God, let this medicine protect my liver.

The miracle of modern medicine is just one of the many blessings I'm counting this Thanksgiving. May you and yours also enjoy blessings and abundance.

Photo by Sanja Gjenero

Curiouser and Curiouser

Much like Alice, I find myself puzzled these days. Alice's strange experience was her travel through Wonderland. For me, it's the liver transplant journey. It's been confusing for both of us.

A quick recap - Two months ago, my labs showed very elevated liver enzymes. Last month they dropped a bit, but were still in the 400s and 500s - far over the high end of the normal range, which is 40. Then a couple of weeks ago I noticed a symptom that I hadn't had before, even prior to my transplant - the color of my stool was light yellowish-gray, an indication that there are bile problems. I had labs repeated and the results continued to be abnormal, so yesterday I had a liver biopsy.

In the past, I would have asked my doctor and liver coordinator a series of contingency questions: "What if the fibrosis is worse? Would you want to A, B or C?" or "If the fibrosis stage hasn't changed, would you need to run more tests to determine why things are out of range?" Finally, almost three years after my transplant, I realize that it's useless to try to predict what's going to happen until the results have been reviewed by my doctor and her colleagues. Too many variables are at play and we could spend hours trying to anticipate what will happen.

So once again we wait and by the end of next week, we should have news and a gameplan. In the meantime, I'll be spending a little time online searching for information about what these symptoms might mean. It's going to be an interesting week, to be certain.

There Might be More to My Liver Biopsy Results than Originally Thought...

Plasma in the liver tissue from last month's biopsy? That's why my most recent set of labs included a test for autoimmune hepatitis? And it looks like the result was positive? What?!!!

So I discovered last Friday. I ran to my computer, as I do, and spent an hour or two Googling away, a frown on my face. Here's what I found on WebMD.com:

Autoimmune hepatitis triggers the body to attack its liver cells, as if the liver cells were harmful foreign bodies. Patients with a combination of HCV and autoimmune hepatitis generally suffer from more debilitating symptoms than patients with HCV alone.

Well, awesome. My body might be fighting itself, in tandem with Hep C. We're a bit alarmed and worried; I need to find my inner peace and patience as we sort out this latest wrinkle. And I'm so damn tired of the "surprises," none of which are pleasant. Oh - my liver enzymes are higher than ever (ALT is over 500!). More blood work next week will provide answers, but I have no talent for gracefully waiting.

Do you know anything about autoimmune hepatitis? If yes, please leave a comment. The more information I can get my hands on, the better.

Yesterday I Had a Liver Biopsy; Now We Wait

As I noted in a previous post, my liver enzymes are significantly elevated and I need to have a liver biopsy in order for my docs to determine what caused the spike. I did some online research and discovered that specific indicators will be present in liver tissue if I'm experiencing rejection; hence, bloodwork alone isn't enough to diagnose what is happening. (Another cause for the spike could be a Hep C flare up.)

My husband and I left our house at 5:00 a.m. yesterday and drove to my transplant center for the biopsy. I'm worried about what might be happening to my precious liver, but surprisingly enough, I wasn't as panicked yesterday as I've been on other occasions (however, I know I annoyed my husband with some back-seat driving; sorry, honey).

I'll tell you about my liver biopsy, in case you haven't had one. As far as liver transplant-related procedures go, this one is pretty easy. My visit to the transplant center started at the lab, where vampires drew some blood (EVERYTHING starts with a blood draw, it seems); the blood test was a PT/INR, which measures blood clotting time. Then we checked in at the GI waiting area and a few minutes later were sent upstairs to the procedure room. The docs and nurses reviewed paperwork with me, started an IV, gave me a warm blanket (it was chilly in there) and made certain that everything was ready to go.

Next, the doc used sonogram to indentify a good spot to do the biopsy (he chose to insert the needle between my ribs; needle placement is always critically important). Some patients choose to not have any pain medication for the procedure (a large group of liver transplant patients have no sensation in the area around their liver because many nerves are cut during transplant surgery; I still have feeling there so I always request pain meds). One or two minutes after the doctor marked the needle placement spot on my side, poof! - I was out. I came to about an hour later. Once the nurses were certain that I was fairly steady and conscious, they wheeled me to the hospital entrance where my husband was waiting, loaded me into the car and we were off. Lab draw and all, we were done in 3 1/2 hours.

The biggest impact on me was being sleepy from the meds; I slept on the way home and most of the afternoon and evening. Today I'm pretty much back to normal (although still a bit tired). I'm at the hardest part of the procedure, which is waiting for results.

A quick note about my transplant center: I have been critical about some of the care I received at my center, because it was poor. Yesterday, though, it couldn't have been better. The docs and nurses were absolutely wonderful, friendly and caring, and I'm impressed and grateful.

One last note: A reader left a comment about how pain meds weren't made available to him for his biopsy (he is waiting for a liver transplant). I think that's crazy. Why make a patient suffer? I believe we heal better when our bodies have been treated gently and with care; otherwise, we're healing from our illness/injury AND trying to recover from the impact of the pain.

Graphic courtesy of Medline Plus/A.D.A.M., Inc.