Good News from Liver Biopsy Results

It's only a flare-up of Hep C! Yeah!

My transplant coordinator called yesterday and told me that my elevated liver enzymes are a result of a flare-up of Hepatitis C and are NOT related to any sort of organ rejection. Whew! We're relieved; it's never great to have elevated liver enzymes, but it's less bad (?huh?) to have a flare-up than to experience rejection and have to take steroids.

That's the good news. So, why the flare-up and what can I do to help prevent them? Focus on and improve my metabolic condition - eat healthily, lose weight (gasp - 30 pounds), get some exercise, control my blood sugar and manage my stress. These things I can do. It will also help reduce my steatosis, which is fat in the liver (mine has increased a lot since my last biopsy in June 2008 - fatty liver is NOT good, especially when you have Hep C). This just sounds gross, doesn't it? Ack!

In A Guide to Understanding Hepatitis C at HCVAdvocate.org, the link between stress and Hep C flare-ups is explained:

Controlling stress is a major factor in managing HCV disease. Living with a chronic disease is stressful. Many people report 'flare-ups' (periods of increased symptoms) following episodes of stress. Exercise, meditation, and time management can all help reduce stress. Try to maintain a realistic picture of your health and a positive attitude. Understanding the severity of your liver disease is an important part of having a realistic picture of your condition.

Financial strains have created an unbelievable amount of stress for my husband and me during the past year (well, more like two years - however, the stress has been truly difficult for the last six months). If stress causes flare-ups, then I came by mine honestly. I also had a flare-up last October/November. Hhmm. I need to consider meditating again.

This week was a challenge, to say the least. Thanks for your prayers.

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.

TIME Magazine's In-depth Look at Medicine and Religion

The new issue of TIME just arrived and I can't wait to read the Mind & Body special feature by Jeffrey Kluger. "How Faith Can Heal" is a multi-page assessment of how people all over the globe turn to God during times of illness. As Kluger puts it,

... there is nothing we pray - or chant or meditate - for more than health.

The section is comprehensive, covering everything from Holy Water in Lourdes, France and the Holy Rock in Lac, Albania, to a Shamanic ritual in Siberia, Russia and Santeria ceremony in Havana, Cuba. It also recommends books and websites.

Given my chronic illness, I intend to read every word of the section - even the technical medical terms I don't understand. I'm a left-brained cynic for the most part, yet I firmly believe in the power of prayer and, more importantly, in the power of faith, which have carried me through my challenging journey.

Let me know what you think once you've read the section. I appreciate other people's perspectives because they teach me and broaden my appreciation for almost any topic.

My Liver is Misbehaving

Two days ago I saw the vampires, who drew blood for my regular set of "how's-the-ol'-liver-working?" lab tests. Yesterday afternoon, at nearly 6:00 p.m. on Friday, my transplant coordinator called - and given the timing and knowing she was working late, I knew the news wasn't going to be so great. It wasn't.

Looks as though the supposed Hepatitis C flare-up I had three months ago has recurred. Here were the results for the key labs we track:

Alkaline Phosphate 316
GGT 570
AST 355
ALT 417

AST and ALT are the more critical elements and given that the normal range for both is 0 - 40, my results aren't good news. I need to go to my transplant center next week to have a liver biopsy, so we can find out what's gone awry.

I don't have to throw myself off the roof or anything yet, but I'm worried. The best guess right now is that I might be experiencing some degree of rejection. I'm not familiar with this (I had a rejection episode when I was in ICU after my transplant, but don't remember it - or much of anything else - from that period of time). I now get to learn about the different degrees of rejection and what is done to treat it. I thought if you experienced rejection, the liver simply failed, fell out of your body and you needed a new one so desperately that anyone involved jumped into a helicopter to fly around and look for a liver. Apparently, that only happens on TV.

When you read this post, would you please say a little prayer that my liver settles down and gets back to work? I will be ever so grateful.

Hepatitis C versus HIV/AIDS

I subscribe to the HCV Advocate Weekly News Review and today's email had some eye-opening information comparing Hepatitis C and HIV. I didn't know that...

* About 3.2 million people in the U.S. have chronic Hepatitis C, compared to about 1.1 million with HIV.

* HCV is harder to kill than HIV and can live longer in blood outside the body.

* Thanks to greater awareness and precautions, the overall number of new HCV infections has fallen dramatically – to about 19,000 cases annually, compared to more than 50,000 for HIV...

I sometimes wonder if Hep C will achieve the level of public awareness that HIV and AIDS have. Of course, it took many years and concentrated efforts by many advocates - celebrities, royalty, elected officials and more - to garner such broad attention for HIV/AIDS. Yet since Hep C is more widespread, it's my selfish wish that people will one day be equally passionate about finding a cure for it.

If you or a loved one has Hep C, be sure to check out the HCV Advocate website. It's a one-stop site for current news on Hep C-related news. Plus, there currently is a notice on the site's home page announcing that it has re-launched the HCV Advocate Medical Writers' Circle, stating, The authors of the MWC are some of the most highly respected hepatitis doctors and researchers from around the world... From time to time, these doctors contribute their expertise to our site. The articles they write cover various topics and are designed to help educate and support our readers.

With only a quick glance over the articles, I've already found several must-reads. Check it out.

Can't Remember What the Doc Says? Get it on Tape

When I was being evaluated for the liver transplant waiting list, my husband and I visited my transplant center for two days of poking, prodding, scanning, mental evaluation and consultation with a transplant surgeon. Needless to say, the experience was exhausting and when we finally met with the surgeon, Gene and I were mentally spent. Yet the appointment was key for us, because the surgeon was going to share essential transplant information - statistics, short- and long-term health issues, details about donor selection and matching, and more.

My husband is the "memory" in our family (he recalls things verbatim; remembering is NOT my gift); however, given the schedule and our stress level, Gene was uncertain how much he would recall from this critical meeting. Since we couldn't rely on our own ability to recall, we decided to take a micro-cassette recorder with us - it was one of the best decisions we made throughout this experience.

As it turned out, we spent about 45 minutes with the surgeon, who happened to be the head of the liver transplant surgical team (it was our good fortune that he was in clinic that day). We asked permission to tape the conversation and he agreed, so we were able to record not only what he said, but our questions and his answers.

IMPORTANT NOTE: Ask permission before you tape the conversation. There may be legal ramifications if you don't; plus, it's just creepy and wrong. Keep your karma positive because your life is going to be in their hands!

We've listened to our recorded meeting many times, both before AND after my transplant, and pick up something new each time. My liver disease-fogged brain couldn't (and still can't) retain it all. If you don't own a micro-cassette player and can't borrow one, a new one with tapes will cost around $40. It's money very well spent.

When You Need to Find Someone Who Has Walked in Your Shoes, Where Can You Turn?

As a liver transplant patient, you quickly learn there aren't many of us out there. According to the Organ Procurement and Transplant Network, fewer than 6,500 liver transplants were performed in 2007 (the most recent year for which complete numbers are available), yet as of January 30, 2009 nearly 15,900 people are on the liver transplant waiting list.

So who do you talk to when you're worried, scared or frustrated? Your spouse or friends are probably as alarmed as you; dare you burden them with your unspoken fears about dying? Doctors can give you basic information, but like the title to this blog, there's plenty they can't or don't share. And this experience is so one-of-a-kind, with unexpected and sometimes bizarre "issues," that only another person going through the same thing can relate.

Many transplant centers conduct support groups for their transplant programs. My program does, but because my center is a two-hour drive away (one way), attending support group meetings isn't practical nor feasible. Furthermore, prior to and immediately after my liver transplant, I didn't want to attend a support group meeting because I thought negative stories, if someone shared them, would pre-dispose me to having a negative mindset about my transplant. (In retrospect, that's kind-of ironic.) However, a year after my transplant I was desperate to find someone who had "walked in my shoes." So I began searching.

My solution? Yahoo Groups - or specifically, a Yahoo group for liver transplant patients and their families and friends. Just reading others' posts has given me a far more realistic picture of liver transplants. Some of the members have had amazingly smooth transplants with few complications (What is that like? I wonder); others have gone through unbelievably difficult challenges. Some members died. Many are adults, yet some are parent of children who need transplants and their recounts are heart-wrenching.

Most importantly, they're wearing my shoes, so to speak. And it's a huge relief to have this connection with a group of people who don't judge me; instead, they are sympathetic or, more powerfully, empathetic. The emotional support they provide is priceless.

If you are on your very own liver transplant journey, strongly consider a support group. It's made a positive difference for me and I hope you can find the same. Or sign up for the liver transplant group (you can use the link below).

If you have other recommendations, please leave a comment and tell us about them. Sharing is good karma!

Subscribe to liver_transplant

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Photo by Ekaterina Boym-Medler

Celebrating Because a Friend is Cured of Hep C

Late last year I received news from a close family friend that he is “… officially cured of Hepatitis C.”

What incredible, fabulous news! Chris discovered that he had Hep C nearly 13 years ago and recently underwent 18 months of treatment on Pegulated Interferon and Ribavirin treatment. His viral count has been zero (undetectable) for more than six months, which is the benchmark you must reach in order to be “cured.”

I’m thrilled for Chris and his family. His wife is one of my dearest friends and their family, including two busy teenaged children involved in sports, was stressed to the core during his grueling treatment. Like most other patients taking these drugs, Chris was severely fatigued, experienced weekly bouts of flu-like symptoms and suffered from symptoms of depression. In spite of all the challenges, he stuck with the treatment and, thank God, it paid off.

Since my transplant I’ve learned that they key to overcoming Hep C is to go undergo treatment before your liver becomes too damaged. I know first-hand how difficult treatment is; I first tried the treatment in 2000, as a single mom raising two children running my own business; I only lasted three weeks. It proved to be too debilitating (I felt sick the entire time and couldn’t work much; not working wasn’t an option), so I quit.

Just six years later, Hep C had damaged my liver beyond repair and a liver transplant was my only answer; without it, I would die. Five months after transplant, the virus had already damaged my new liver (I had stage 2 – 3 fibrosis) and a couple of months later I resumed the Interferon/Ribavirin treatment. Sadly, the drugs weren't effective; however, a biopsy last summer showed that the fibrosis had dropped to stage 1, but the improvement can't be directly attributed to treatment.

If you’re debating whether or not to try treatment for Hep C, DON’T WAIT! Get every bit of support you can and start Hep C treatment as soon as you can. This disease doesn’t just shorten your life – it diminishes your quality of life.

Take it from me: The alternative to Hep C treatment – a liver transplant – is nothing you want to have to undergo.

A Real Pain in the Leg

Everyone gets a muscle cramp from time to time. For me, it's usually the calf of my leg and I can relieve it by eating a banana (for the potassium) and walking or stretching. They are uncomfortable but no big deal.

That was before I had end-stage liver disease. Muscle cramps became one of the most challenging, if not the worst, symptom I experienced when I was sick.

Four or five months before my liver transplant, I began having bad muscle cramps in my legs and feet. Really bad cramps, whose frequency and severity increased as time passed. Then I began having them in my hands, too. These "cramp attacks" happened without warning at all times of the day and night. Night cramps were the worst, because they would jolt me out of my sleep (and I wasn't sleeping well then, so it was insult to injury) and keep me up for an average of one to two HOURS. Yes, you read that right: hours.

I never really understood what caused the cramps. Thinking that the diuretics I took (because of water retention) had depleted my body of potassium, I ate bananas, but no luck. My doc prescribed potassium supplements, muscle relaxants and sleeping meds, but no luck. Someone suggested tonic water; again, no relief. Actually, nothing made the cramps stop.

The cramps were so bad that there were times when I couldn't go up and down the stairs in our townhouse. On other occasions, my husband had to help me dress because I couldn't bend my leg to put on pants or socks. And losing sleep because of the cramps was insult to injury.

The cramps subsided only after my liver transplant and I haven't had one since. But more than two years later, I still recall how miserable they made me. I'm glad they're gone!

A Pesky Little Symptom of End-stage Liver Disease

Prior to my transplant, when I had end-stage liver disease, I experienced an array of related health issues that were bizarre or bothersome or painful, and sometimes all of these simultaneously. They sucked.

This morning I was reminded of one of these symptoms when I made an appointment to see my otolaryngologist - fancy word for ear, nose, throat doc - for an ear issue (I've had them since childhood; they aren't liver related). I remember that I last saw him 2 1/2 years ago because of nose bleeds. Yep, nose bleeds - just another one of the pesky little symptoms that may or may not plague other people awaiting liver transplants.

Here's what The Hepatitis Trust says about the condition:

Abnormal Blood Clotting (Coagulopathy)

The liver makes a number of coagulation (clotting) factors including prothrombin and fibrinogen. Most of these require the presence of vitamin K to function normally. Vitamin K, which is a fat soluble vitamin, in turn requires bile salts to be absorbed properly by the body. If the liver does not produce enough bile this will have a knock on effect on the capacity to clot blood. This can lead to so called thin blood and increases the risk of bleeding. Warning signs of mild coagulopathy problems include frequent nose bleeds, prolonged bleeding of the gums, and bruising easily. You should see a doctor immediately if any of these warning signs are present.

Before my transplant I didn't experience varices - bleeding in the esophagus that is extremely serious because it's unpredictable and can be fatal - yet I sometimes wondered if it were possible to bleed to death through my nose. My nose bleeds occurred randomly, without warning, and sometimes would not stop for extended periods (15 to 30 minutes, which seemed like a lifetime when I was in business meetings).

So, I saw Dr. M and learned that the procedure to address the bleeds required cauterizing some of the blood vessels running to my nose. As I frowned at that prospect, he went on to say that any relief would be temporary and the only real way to "fix" the problem was by having a liver transplant. Sure to his word, I haven't had a single nose bleed since my transplant (though, in retrospect, the cauterization procedure would surely have been easier than a transplant; at least I didn't have to do both!).

As awkward and challenging as they were, the nose bleeds didn't hurt. At most, my nasal passages felt raw at times and I used a nasal moisture product to ease the discomfort. On a "This Sucks" scale of 1 to 10, with 10 being the suckiest, I give nosebleeds a 3 to 4 (mostly because of the mess and how much they alarmed other people). I had other symptoms of end-stage liver disease that were FAR worse - and I'll tell you about them another time.

Need a Liver? Grow Your Own

The current issue of TIME magazine has a fascinating cover story, "Stem Cell Research: The Quest Resumes," that is a must-read for anyone suffering from chronic illness or disease. As stated in the article, "On Jan. 23, after nearly a decade of preparation, the Food and Drug Administration approved the first trial of an embryonic- stem-cell therapy for a handful of patients paralyzed by spinal-cord injuries."

Scientific gains from these trials and other ongoing stem-cell research have the potential to impact nearly every facet of medical research, including liver disease and organ transplantation. It's not implausible, researchers say, to expect that patients will be able to grow their own replacement organs, thereby negating the need for immunosuppressants. Given the negative side effects associated with these drugs (high blood pressure, high blood sugar, kidney damage, magnesium depletion, upset stomach and more), eliminating immunosuppressants will be extremely beneficial.

Beyond transplants, stem cell research could one day lead to a cure for diseases such as Hepatitis C. If a medical researcher somewhere needs a Hep C-infected, post-transplant liver patient to participate in a clinical trial involving stem cells, count me in. My children are just 15 and 16 years old and if I want to live long enough to meet my grandchildren, scientific breakthroughs must occur. I'll gladly do my part!