My Doctor is Better than Your Doctor

I'm grateful to have a wonderful heptologist. OK, maybe you have a great doctor, too. But mine's best and here's why:

* She keeps abreast of the latest research and advances in her field

* She understands the dilemma her patients face when it comes to healthcare and health insurance

* My doc thinks outside the box and will consider alternatives that her peers might consider unconventional

Last month my husband and I had an appointment with my doctor and she spent at least 30 minutes with us discussing results from recent bloodwork and my liver biopsy in January. The current state of my liver and hep C have created a complicated scenario where there isn't one quick, obvious or easy plan of treatment. But I'm confident that I have the right expert guiding us on this crazy journey.

Thanks, Dr. S., for everything.

Photo by LotusHead, www.pixelpusher.co.za

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.

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

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

Nurses are Angels on Earth - Treat them Well

In my experience, the most important person in the power hierarchy of an organization isn't the person at the top, but the people with un-glorified roles who know what's going on and interact day-in and day-out with the "customer." It's not the company CEO, it's the CEO's assistant. And at a hospital it's not the doctors, it's the nurses and staff.

Think about it - you have surgery and your doc visits once a day to check your breathing, look under the bandage and ask how you feel. Four or five minutes later he or she is out the door.

The nurses - that's a whole different story. They dispense drugs, including painkillers; make sure you have food, something to drink, a clean gown; and hold your hair back when you vomit. Nurses also suction your trach tube when it's clogged with phlegm and share tips about how to keep your IV line from becoming tangled. Nurses are angels on Earth.

Other deserving staff including nursing assistants (they also hold your hair when you vomit), nutrition employees who deliver your meals (which are often the highlight of the day) and maintenance workers who mop up all that stuff you expel onto the floor.

If your hospital stay extends for more than two or three days, these people become very important in your world and they should be treated well and with respect. During my transplant-related hospital stays, I took candy for the nurses and staff (and docs, too - after all, they saved my life). I'm not talking cheap hard candy - it was mini chocolate bars for those folks. When the supply ran low my husband bought more.

I also take candy to family and friends who are hospitalized, for their nurses. I want them to get the best possible care, so I treat their nurses well.

I'm interested in other opinions on this topic, especially from nurses and hospital staff. What can patients (and their family and friends) do to express gratitude? And if you've been a patient, what have you experienced? Please tell us by leaving a comment.