liver transplant. What a wonderful occasion! There have been plenty of times when I wondered if I'd make it this far, so celebrating the day is a blessing.
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
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 follow-up to last month's labs wherein I set a record-high ALT and AST. Blood was drawn for transplant center's standing lab order and a handful of other tests, as well as a few tests for my local internist; altogether, the tech drew about 10 tubes (no exaggeration). Additionally, I had to bring in 24-hour urine collection (THAT was fun) which will be used to gauge kidney function - an important factor to check for liver transplant patients because many experience kidney damage after the transplant.
HCV Advocate, an EXCELLENT resource for anyone with Hepatitis C, published in its October newsletter a list of key symptoms that accompany decompensated cirrhosis (the liver is severely scarred and damaged). They include:
his death Deasy wrote a first-hand account of his experienced that was published in The Observer under the headline, "My Wait for a Liver Transplant on Britain's Invisible Death Row: Frank Deasy Explains How a System in Crisis Could Be Transformed if More of us Registered for Organ Donation." He also spoke about his illness on Irish National Radio, prompting Irish Health Minister Mary Harney to praise him "for speaking out publicly about his illness and the importance of organ donation."
nothing at my last appointment, so this is a new condition. I brought home a brochure and will read up on cataracts, about which I know virtually nothing. What I thought I knew was that cataracts usually belong to the world of the elderly and surgery is required to remove them. Sure, I turned 50 a couple of months ago and while that made me eligible for AARP, I never imagined that it made me eligible for cataracts. It's an insult, frankly.
Pharmaceuticals will present data from studies that evaluated telepravir, which Vertex describes as a "investigational hepatitis C virus (HCV) protease inhibitor." The hepatologists at my transplant center have been following these studies and if they're interested, so am I, particularly about results from "a pooled analysis of PROVE 1 and PROVE 2 in 'difficult-to-cure' patients" - and I fall into that category. Click here to view the entire news release about the Vertex presentations planned for the AASLD Conference.
According to its real-time tally, 103,790 people are waiting for organ transplants as of 2:23 p.m. today. Year to date, as of September 18, 2009, 14,191 transplants had been performed with organs donated by 7,249 donors.
Organ donation is the ultimate gift any person could give. Given the extraordinary need for organs, every donor becomes an automatic superhero, a champion, a life-saver.
that was effective from the date I initially applied for SSD. We paid off loads of bills, bought our kids a used vehicle and fixed up some things around the house. What a blessing! I cried happy tears when I learned that I was found to be disabled and really bawled when they told me about the back payments.
I want to know WHY. Why, all of a sudden, did I stop having periods when I'd them like clockwork for years? Why did they come and go? Yes, I was in my late 40s so it could be perimenopause symptoms, but couldn't it also be something else, something related to my liver condition? Given the timing I didn't believe it was coincidental.
Another important presentation was given by Dr. Terrault who discussed the unique aspects of liver disease management in women. While the authors described a number of important observations, the most interesting were the findings that the risk of amenorrhea is increased in women with cirrhosis...I need to do a bit more digging and see what I can unearth on this topic. Knowing about and understanding the impact of liver disease and cirrhosis on my menstrual cycle is IMPORTANT TO ME. Without information, I can't cope with the myriad physical symptoms and changes that I deal with on a daily basis.
Dr. Terrault also stated that women with chronic hepatitis C have slower rates of fibrosis progression as compared to men, and that when they are treated for their disease, they are more likely to attain a sustained virologic response. All is not optimistic, though, because during their post-menopause years their HCV disease and progression to fibrosis tends to accelerate. Once these women hit the post-menopausal period, their risk of developing hepatocellular carcinoma also increases.
week Steve Jobs appeared at an Apple Inc. product unveiling news conference, which was his first official appearance in public since a liver transplant earlier this year. In explaining his transplant surgery, Jobs said,
I have the liver of a twentysomething person who died in a car crash and who was generous enough to donate their [sic] organs.Liver transplants are uncommon and unlike cancer or heart disease or diabetes, which are more commonly found in the general population, liver disease and organ donation don't have the same level of awareness. So when a world renowned CEO like Jobs has a liver transplant, people notice. And they talk. And, hopefully, they sign up to become organ donors.
I wouldn't be here without such generosity, so I hope all of us can be as generous and elect to be organ donors.
A bit more about Mr. Sellers, who is "...accused of heading the Aryan Warriors inside Nevada prisons. Under his leadership, the gang distributed methamphetamine, sought to corrupt prison guards and assaulted fellow prisoners in racially motivated attacks that left one inmate dead, federal authorities said."
According to Dr. Michael R. Lucey of the University of Wisconsin, Madison, and colleagues: "Except in patients with very low or very high Model for End-Stage Liver Disease (MELD) scores, HCV status has a significant negative impact on the survival benefit of liver transplantation..."
In an editorial published with the study, Dr. Sumeet K. Asrani and colleagues from the Mayo Clinic College of Medicine, Rochester, Minnesota, discuss the implications of these findings if a "benefit-based transplant policy" were to be adopted in the face of an organ shortage that mandates rationing of a scarce resource.
The data, they write, suggest that "compared to patients with ALD (alcoholic liver disease) who have comparable MELD (Model for End-stage Liver Disease) score, patients with HCV (Hepatitis C virus) should be given a lower priority when their MELD is intermediate (score of 9 to 29), whereas patients with HCV who have higher MELD score should be given an even higher priority than candidates at the same MELD score with another diagnosis."
For such a benefit-based transplant policy to be implemented, Dr. Asrani and colleagues note, the transplant community "must be willing to accept this departure from the traditional thinking: because some patients with hepatitis C will experience poor outcome, they will be placed at lower priority than patients without HCV who are faced with the same (or even lower) risk of death while waiting."
Summing up, Dr. Asrani and co-authors say this study is "an important step" in the continued debate on which variables matter in predicting survival benefit of liver transplantation and whether an organ allocation system based on predicted survival benefit can be equitably implemented.
Here was the secretary's response: "Your coordinator is on vacation this week and we don't really know anyway, so wait until you hear that the vaccine is approved and call us back."
CHICAGO (Reuters) - A slight difference in a person's genetic code could determine whether they respond to a grueling round of treatment for hepatitis C infection or not, U.S. researchers said on Sunday.Great research like this leaves pragmatic me with questions about the practical application of these findings - Will patients be screened for this biomarker prior to treatment? How much will the screening cost and when will it become a standard part of the process?
Tests looking for that deviation could be used to help decide which patients are most likely to benefit, they said. The finding may also explain why some racial and ethnic groups fare more poorly on standard treatments than others...
"If you look at individuals with the good response genotype, about 80 percent of them will be cured. If you look at individuals with the poor-response genotype, about 30 percent of them will be cured," [said genetics researcher David Goldstein of Duke University, who led the study]. "That is just a huge, huge difference."
[The study] was funded by Schering-Plough, maker of one of two standard hepatitis C regimens -- a combination of Pegintron and the antiviral ribavirin.
blogging after a little break. I was wrong. And I disappeared again.
Best wishes to Steve Jobs for the success of his (still rumored) liver transplant two months ago. From what I've read, his need for a transplant was uncommon and due to complications or a condition caused by pancreatic cancer.
I decided to be proactive about making sure Social Security reps received the records they needed from my doctor and the hospitals I had stayed in (my transplant center and the local hospital where, in May 2006, I had my gallbladder removed and received the news about needing a liver transplant). I faxed a request to my local doctor's office, then made personal phone calls to records departments at both hospitals to ensure they had received the request and were responding. Cynic that I am, I was pleasantly surprised to learn that all had been received and records were being mailed. Yeah!
Considering that I grew up in the South, around swimming pools and beaches in the days when there was nothing better than sun-kissed blonde hair and a deep brown tan (or for me, a red-hot sunburn), I expected to become good friends with a dermatologist when I got older and it became time to pay the price for my sun-worshipping ways. My transplant and immunosuppressants are like gasoline on a fire.
(I spent at least two hours completing the report). It asked for names and complete contact info for all of my doctors, lists of tests that have been conducted, dates (this was challenging because I didn't document my transplant experience in detail), symptoms and more. A word of advice: If you're going through this process, keep a record of every doc, test, procedure, result, you name it. I kept copies of reports and other paperwork, but additional detail would have made it much easier to complete the report.
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.
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.
(that) provides support for patients with severe liver failure by processing toxins and synthesizing proteins and metabolites that are key products of normal human liver function."
Our household was structured on two incomes and trying to live on one isn't working. To help cover our monthly expenses, we got a home equity line of credit - that money is gone. We also swallowed our pride and borrowed money from a family member and used it to pay expenses, too. Now, having tapped every available financial resource and pinching our pennies as hard as possible, we still need more income, so I have filed for Social Security Disability payments.
The 5-year survival rate is 30% for those with HCV who have had a liver transplant and have progressed to cirrhosisStats like this keep me awake at night. My liver transplant was just more than two years ago and already fibrosis, the precursor to cirrhosis, is present in my liver. Granted, the fibrosis score is fairly low, but Hep C is damaging my new liver.
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!
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.
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.
... there is nothing we pray - or chant or meditate - for more than health.
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.
Alkaline Phosphate 316
GGT 570
AST 355
ALT 417
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.
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.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.
* 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...
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.
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.
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.
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.
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.
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.”
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.
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.
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).
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."
with a healthy liver in place, some patients begin or continue to feel depressed. One year after transplant, Hep C-infected patients (like me) experience greater depression than non-Hep C patients (they also have a lower quality of life and less physical functioning than other transplant patients).
From the "Are you kidding me?!" file is the current news story about a divorcing couple in New York and their bizarre battle over marital assets. Apparently, the husband considers his kidney an asset - that is, the kidney that he donated to his wife in 2001 - and "wants his estranged wife to return the kidney" or pay him $1.5 million as compensation.
A brief aside about friends: I often think about my friends and how much I value them. As stated on a needlepoint piece that was a gift from a girlfriend, "Friends are the family you choose." My friends truly are my family, because outside of my husband and children, they are my primary sources of encouragement and emotional support. Regardless of the need, I can always find friends' helping hands reaching my way. And if the need is extreme, my friends band together and "circle the wagons," as they did during my transplant.
There is a television commercial that starts something like this, "What does depression look like...?"; it continues with sad pictures and images of people lying around with dark circles under their eyes, all the while promoting the merits of a particular antidepressant.
And so for the next 15 to 18 months I dragged along. Whenever my energy level improved I'd feel better, more positive - but then one of the seemingly never-ending "hiccups" would occur, I wouldn't feel so well and then I would become frustrated and depressed once again. It sucked. I stayed home, rarely wore makeup, napped often, grumped "Why don't I feel better?" and fruitlessly tried to exert control over an uncontrollable situation. Yes, depression looked like me.
I look forward to 2009 with a new attitude, with optimism and hope, reflecting on the message I discovered in a fortune cookie:
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