Transplant Center Stats - Does One Bad Apple Spoil the Whole Bunch?

A front-page article in the November 21st issue of The Wall Street Journal, "Doing a Volulme Business in Liver Transplants," was thought-provoking and, ultimately, disturbing. According to the article, the non-profit University of Pittsburgh Medical Center (UPMC) hired an innovative and aggressive surgeon, Dr. Amadeo Marcos, to head its under-performing liver transplant program, with the directive to increase the number of liver transplants performed every year. Dr. Marcos doubled the amount of liver transplants conducted at UPMC, but this achievement was in question because "... he resorted to practices that some colleagues found questionable... he used more livers from older donors [and] transplanted some of these into relatively healthy patients for whom the risk-reward calculation was less certain. He used partial livers from living donors, and then understated complications from the controversial procedure."

My husband and I discussed this article and what it could mean to transplant candidates. Prior to my surgery, we did a lot of homework, including reviewing transplant survival rates for liver transplant centers within a four hour drive of our home. We wanted a transplant program that had the following: 1) most importantly, a track record of performing a reasonably large number of transplants annually (to help ensure that the surgeons and staff were highly experienced and that a liver was likely to be available when I needed one); 2) was close enough to our home that pre- and post-transplant doctor appointments wouldn't be too overwhelming; and 3) was part of our health insurance plan.

It never occurred to us that we should be concerned about the accuracy of the transplant data we reviewed. We knew that not every available liver was top-rate (from a young, healthy donor), but our transplant team explained that if there were any issues about the donor liver, we would be told prior to surgery and have the option of rejecting the liver. (Note: We were told that my donor liver was in excellent condition, so we never had a discussion about possibly rejecting it.)

I believe that the situation at UPMC was the exception to the rule, that most transplant centers, doctors and staff put patients, not profits, first. But the article raises a valid question and I don't know how it can be answered. How can you tell if a program is operating under a risky protocol? Do centers publish their donor organ selection criteria? If you believe the organ you're offered isn't acceptable, does it mean that you're a "troublemaker" and won't be treated fairly or objectively?

The article raises many questions and I'm very curious about possible answers. Please leave a comment and share your thoughts, knowledge and other questions - this topic warrants a healthy discussion.

A HUGE Medical Breakthrough - Stem Cells Used in World's First "Tissue-engineered" Transplant

I've often thought it would be much easier if I could just grow my own replacement liver... and it seems my wish may come true far sooner than expected.

Today's feature article in the British Journal TheLancet.com titled, "Clinical Transplantation of a Tissue-engineered Airway," describes how a 30-year-old Colombian woman whose airway was severely damaged by tuberculosis was transplanted with a windpipe (from a deceased donor) that had been altered with the woman's own stem cells. Although the patient has not taken immunosuppressants since her transplant in June 2008, her immune system has not rejected the transplanted windpipe.

What an advancement! Immunosuppressants are life-savers but they exact a tremendous toll and can cause serious side effects, including high blood pressure, kidney damage, liver damage, increased chances of infection or illness, anemia and/or high blood sugar, to name a few (depending on the immunosuppressant). Some of the side effects don't show up for years and transplant patients must take immunosuppressants for the rest of their lives.

Congratulations to the physicians, researchers and staff at universities in Barcelona, Spain; Padua and Milan in Italy; Bristol, England; and at the Hospital Clinic in Barcelona, all of whom participated in this ground-breaking procedure. Gracias, grazie and thank you.

Florida's Specialty License Plate for Organ Donation

On July 1, 2006, the State of Florida began offering motorists a new specialty license plate option: "Donate Organs. Pass It On."

In case you're unfamiliar with the program, Florida allows specialty license plates as a fundraising mechanism. Legislative action is required to establish a new plate and applicants must meet demanding eligibility criteria, including obtaining the sponsoring support of a state senator and representative. Once requirements are met and the Legislature approves the bill, the new plate becomes official and production begins.

Here are some stats about Florida specialty license plates for 2007:
- Florida has 109 specialty plates
- Over 1,562,000 plates were purchased (in 2007 alone)
- Most popular plate? University of Florida (more than 105,000 bought)
- "Donate Organs" plate was ranked 89th, with 1,101 issued

Pretty amazing, huh? (1.562M x $25 = a LOT of money!) The plates do more than raise funds; they also raise awareness. I'm a moving billboard of sorts, and I hope the plate reminders drivers following my car to become an organ donor.

I bought a "Donate Organs" plate as soon as I could, in June 2007 when I renewed my license plate. It's a colorful, uplifting design, don't ya think? The $25 fee I paid for the plate (above standard license plate fees) goes to Transplant Foundation, Inc., which is affiliated with the Miller School of Medicine at the University of Miami (Florida), and the money is used to increase awareness of and provide education about the need for organ donation.

I encourage all Floridians to consider getting a specialty license plate. Even in these tough economic times, $25 is an affordable way to support a cause that is near and dear to your heart (or liver, in my case). It's an easy way to help make our world better.

Another Email from My Husband While I Was in ICU

Monday, December 18, 2006 2:56 p.m. (sent by Gene)

Dear friends,

Anyone who knows my lovely wife knows that she operates on her own unique sense of time, which is a polite way of saying Jay often runs late. And that may explain why her recovery timetable differs from our expectations. At least that's my theory. But if there's one thing I've learned about Jay... it's to just let her do it her way. Might as well because you know she'll get it done right.

It's been two weeks since Jay underwent surgery, and she remains in ICU. But I think we're finally beginning to make some headway and hope to move to an intermediate care floor any day now. Many of you have expressed concern about Jay's long stay in ICU, but rest assured, she's been in stable condition throughout. She's just been stuck in neutral; every time she begins to get better she runs into some complication that stalls her progress. Fortunately, the doctors have witnessed all of Jay's problems before in other patients, and they've been able to find a fix for them out of their liver transplant "playbook."

Last Wed., the doctors performed a tracheotomy to help Jay breathe more easily. She was having a tough time getting off the ventilator but since the procedure has fared much better. Yesterday, she breathed on her own for 6 - 8 hours without any machine assistance! If she can build up her endurance to go 10 hours on back-to-back days, she'll probably ditch the ventilator for good.

A few days ago, Jay's body also exhibited the first signs of rejection. It's a frightening word but something transplant patients will have to deal with for the rest of their lives. Rejection can occur at any time and it can happen quickly or occur gradually. The good news is that there are several immunosuppressive medicines that should manage this problem. The doctors gave Jay some of these meds and they appear to be working well.

All things considered, Jay seems to be doing better. Her trache tube prevents her from talking out loud, but she's trying desperately to communicate. Much to her dismay, neither the nurses nor I can read her lips very well. One day Jay was really jabbering, and I couldn't make out a single word. I suspected that she was in a drug-induced haze and talking gibberish. So I asked her nurse, "Do you think she's lucid?" And before the nurse could reply, Jay shot me an indignant stare. No translation needed. I'll pay for that comment later!

Thanks for all your love and prayers... God bless,

Gene

Just Looking for a Little Respect from the Healthcare System and Its People

For the third week in a row I'm having to have blood work done, so yesterday I went to see the vampires (phlebotomists; it's my little nickname for them) at my local lab. A new tech insisted on searching both arms for veins, even though I showed him the ONE AND ONLY spot on my body where a vein can by found. He pinched my arms with those stupid rubber straps, had me pump my fists, wiped alcohol all around - and guess where the blood was drawn? Yep, exactly where I showed him to draw it in the first place.

I'm pretty steamed about the incident. How 'bout a little RESPECT, people? Maybe an ounce of compassion? Would you just LISTEN to what I'm telling you?

In the past 2 1/2 years I've had three major surgeries, six or eight medical procedures and about 75 blood draws, each of which required a needle in a vein. I've always been a "hard stick" and these days the sticks are more difficult than ever. Why did the tech disregard my comments? Did he believe he could discover a blood vessel that the other dozens of techs couldn't find? Because I insisted that there would be no iffy attempts, at least I didn't have to suffer through another needle digging around under my skin, hopelessly searching for a vein that wasn't going to cooperate.

This tech isn't alone - the scenario occurs repeatedly. To the phlebotomists of the world, I say, Respect your patients and heed what they are telling you. Especially those of us with chronic illnesses - we already suffer enough.

Maybe, at the end of the day, it's simply putting the Golden Rule into play: Do unto others as you would have them do unto you. As it applies elsewhere in life, this adage can work in the world of medicine. I, for one, will be grateful.

Paying for Transplant Surgery - Can You Afford $500,000?

How much does an organ transplant cost?

For most of us, more than our house. FAR more. In 2007 the average price of a house was $266,200; the average estimated cost of a liver transplant was $519,600 (www.transplantliving.org). Who has that kind of money in the bank?

My transplant expenses are close to a million dollars now, due to numerous complications and six months of Hepatitis C treatment (which alone cost thousands of dollars per month). I’m very fortunate: Our family has good medical insurance and the vast majority of our bills were covered by insurance. But we’re still paying off thousands of dollars worth of deductibles, co-payments and co-insurance. And some expenses are ongoing: Prescriptions run about $200 per month (that’s our out-of-pocket cost).

The expense of paying the transplant bills and ongoing medical costs is one issue. Our biggest challenge is the dramatic drop in household income combined with the expenses (because of illness I haven’t worked in more than two years). Do the math and it becomes starkly evident: We’re in financial hell.

We’re the lucky ones. Because we had good medical insurance I was able to have my transplant and we’re keeping afloat (well, we haven’t gone under yet!). I often wonder about transplant candidates who have little or no health insurance – what about them? I volunteer with a woman whose brother-in-law died of liver disease because he didn’t meet the financial criteria at his transplant center. Hearing about this shook me to my core. There but for the grace of God go I. And my cousin in Athens, Georgia, sent me a link to a community fundraiser for a 12-year-old girl who needs a liver transplant. (Visit http://www.athensindiecraftstravaganzaa.com/ for information or to make a donation for Olivia King’s transplant.)

Is it ethical to deny medical services to people who can’t pay? Is it fair to expect hospitals to absorb these expenses? I struggle with these questions and of course, I’m biased on the matter. What do you think? Please leave a comment.

Surviving Hepatitis C and a Liver Transplant: Learn the Lingo

Information is what every patient needs when faced with illness or injury. No matter how much time you invest educating yourself about your condition, you'll never get enough or have too much info.

Let's face it: Medical professionals not only know lots of things we don't know, they communicate using a language that's arcane and confusing. For this reason, one of the first things patients should do is become familiar with the medical jargon specific to their illness.

Over the past couple of years I've expanded my vocabulary to include liver disease terminology, which was necessary so I could follow my doctors' conversations and instructions. Here are a few new words in my vocabulary that describe symptoms and conditions of liver disease (definitions are from hepatitis-central.com):

* Ascites - Accumulation of serous fluid in the peritoneal cavity, usually encountered wtih portal hypertension or heart failure. Uncomfortable accumulation of fluid causing abdominal swelling. This occurs when the blood flow through the liver is obstructed. (I referred to the swelling in my belly as my "liver baby" because I looked very pregnant.)

* Varices (Esophageal and Gastric) - Submucosal varices of the lower esophagus or gastric fundus mucosa are frequently caused by the development of portal collateral vessels as a result of portal hypertension. Abnormally dilated/stretched veins. Dilated veins; these can rupture, leading to massive bleeding. (These are swollen veins in the esophagus that could easily rupture and cause a patient to bleed to death; I managed to avoid this complication.)

* Encephalopathy - A variety of brain function abnormalities possibly caused by circulating gut-derived brain-toxic proteins not cleared by a dysfunctional liver; symptoms can include insomnia, confusion, disorientation. (I had a touch of this and it made me forgetful and sleepy - I referred to it as "liver dementia.")

Searching for these definitions often required looking up definitions of even more terms (e.g., "portal collateral vessels" in the definition of varices, above). Ultimately I was able to boil these terms down to the point that I understood what they were and more importantly, understood what they meant in terms of my illness. My vocabulary lessons continue to this day.

Hepatitis-central.com has an extensive glossary of liver and Hepatitis C terms. If you know of other good resources that define medical words in layman's terms, please leave a comment and tell us about it. After all, you can never have too much information.

Photo credit: Thad Zajdowicz

Vote!

Voting is a privilege, a right and a responsibility. I've always voted and this year more than ever, I appreciate having the chance to do so. You see, without my liver transplant I wouldn't be alive today. So being able to vote is more than my civic duty, it's a delight - it's just one of the many ways I get to celebrate life. And voting is important!

I live in Florida and if there's one thing Floridians have learned (the hard way), it's that every vote counts. Don't take this opportunity for granted. I urge other Americans to join me at the polls today. Let's make our voices heard. Go celebrate life.

Another Post-Transplant Email: After One Week, Still in Intensive Care

Monday, December 11, 2006 2:42 p.m. (sent by Gene)

Dear friends,

I’m writing this note, appropriately enough, camped out in front of a sculpture called the “Wings of Hope” in the lobby of the hospital. A few art pieces like this are scattered throughout the building, commissioned by an Arts in Medicine program. It’s a nice touch that spruces up an otherwise somber environment.

I wish I had better news to report, but Jay’s condition hasn’t changed much since I last wrote all of you. Thank goodness, she’s not trending the wrong way, but progress has been slow and incremental at best. Nearly every morning, the doctors greet me with “Jay’s hanging in there. She’s doing OK, but…“ It’s this pause that I can do without. Usually it’s nothing alarming, but some indicator always seems to be a bit out of range, i.e. low platelet count, a slight fever, too much of this, not enough of that. I’m doing my best to digest all this info, but it can be an overload at times. I’m just proud that I can remember all of the doctors’ names… I’ve dealt with 8 of them so far; 3 surgeons, 3 critical care doctors, 1 hematologist and 1 liver specialist.

Jay is still in intensive care, primarily because she’s having issues breathing. The doctors assure me that Jay’s lungs aren’t damaged; they say her prolonged illness, combined with the trauma of major surgery, weakened her more than anyone could have imagined. Jay has been on a ventilator continuously for almost a week; they want to remove this ASAP because having a huge breathing tube down your throat isn’t very sterile. As an alternative, the doctors are considering performing a tracheotomy. It should enable Jay to breathe a little easier and minimize the chance of infection. But it’s a surgical procedure… and the doctors would rather spare Jay another trip to the operating room if at all possible. The good news: If the “trach” is successful, Jay likely will be moved out of ICU and on to an intermediate care floor. I’m guessing the trach will be done sometime this week.

Meanwhile, Jay appears to be resting relatively pain-free. Good meds, I suppose. Yesterday, she was very alert and waved to me when she spotted me from across the ICU. As I approached her bedside, Jay waggled the ring finger of her left hand, gesturing for her wedding band. I’ve been carrying it around in my backpack and when I showed it to her, Jay smiled and gave me a thumbs-up sign. I told her everything all of her friends and family are doing for her, for our kids and for me. She smiled again and nodded. Jay may not be able to talk, but trust me, she understands your love.

Thank you again for all your prayers and good wishes. God bless…

Gene

A New Hepatitis C Treatment Could Save My Life

I have hepatitis C. It's a disease without a cure, plagues four million Americans and is the leading cause of liver transplants in the US and Europe. I have type A, which is the most common genotype in the US and most difficult to treat.

My transplant center has a highly regarded hep C research and treatment clinic, which benefits me because hep C doesn't go away after a transplant. The virus spreads throughout your body and surgery removes only the organ damaged by the virus; it doesn't eradicate hep C from your body. For transplant patients like me who have hep C, the hope is that the virus will kick-back and maintain a low profile for a few years after surgery, before starting to scar (called fibrosis, the precursor to cirrhosis) the new liver.

Sadly, my virus is literally and figuratively "Type A." (Get it? Ha ha, well, uh I guess it's really not that funny.) Fibrosis grade 2 to 3 was discovered in my liver four months after my transplant and not long after that, I began the standard treatment (pegulated interferon and ribavirin). Even more sadly, 12 weeks of shots, pills and feeling like crap later, we discovered that treatment didn't clear the virus from my system.

[On the upside, my most recent biopsy (June 2008) showed that my liver actually looked better than it did 14 months earlier with the fibrosis only at grade 1 to 2.]

Nonetheless, I know that my new liver is vulnerable and I'm concerned because my transplant center doesn't perform second transplants on patients whose livers are damaged by cirrhosis (regardless of whether cirrhosis was caused by hep C, alcoholism or another condition). The chief liver transplant surgeon told us this prior to my surgery but at the time, it didn't register. Back then I was focused the countless details involved with my first transplant and a second transplant just didn't seem to warrant consideration; now, it's top of mind.

Because of my susceptibility I try to keep informed about the promising new drugs currently in development, one of which was featured in a story posted yesterday on reuters.com. Schering-Plough released phase II data about its clinical trials for boceprevir at the annual meeting of the American Association for the Study of Liver Diseases. Results indicate that boceprevir used in combination with the standard treatment is statistically more effective in clearing the hep C virus. Additional improvement is noted if patients start standard treatment before boceprevir is introduced.

You go, Schering-Plough and Vertex Pharmaceuticals and all you other drug companies and scientists who work hard to find new treatments and/or a cure for hep C! Along with 170 million other people around the world who are infected with hep C, I give you thanks and, if I could, I'd give each of you a gigantic hug. You’re my heroes.

I'm curious to get your thoughts about clinical trials and funding for medical research and, in particular, drug development. People have such varied opinions about who pays for drug research and whether government funds should be spent on these endeavors.

Personally, I wish we could take even 10 percent of the money spent on the 2008 presidential election and put it toward something positive and useful, like medical research.