Tuesday, July 27, 2010

Ethics in Transplantation: Deciding Who Gets the Next Available Organ

When it comes to liver allocation for transplant patients on the waiting list, should factors other than MELD scores be considered? I've often considered this topic, which popped up again this morning when I read about man in New York who is suspected of killing his wife yet received an emergency liver transplant ahead of 2,000+ other people on New York's waiting list.

Turns out the guy needed the transplant because he consumed rat poisin in a botched suicide attempt and the poison ruined his liver.

Was this fair? I don't know. As I've stated before, I'm glad I don't make these decisions.

Photo by Sigurd Decroos

Sunday, July 25, 2010

Researchers Look at Metabolic Syndrome after Liver Transplant

In a 2009 issue of Liver Transplantation, researchers found that liver transplant recipients were three times more likely to develop metabolic syndrome than the general population. The study stated:

Metabolic syndrome is an "epidemic waiting to happen" among liver transplant recipients, largely as a result of their increasing likelihood of survival ...
An article on www.medpagetoday.com provides more detail about the study and recommendations for reducing chances that liver transplant recipients will develop metabolic syndrome.

If you've had or are waiting for a liver transplant, take time to read this article. This information is important. I'm living it now and trust me, it's a challenge.

Saturday, July 24, 2010

I am the Ringmaster

Oh, for crying out loud! I KNOW I need to be my own healthcare advocate, so shame on me for letting this happen. Live and learn ...

In my last post I described my recent flurry of doctor visits - four doctors in one week - and each made changes to my medications. These doctors know about each other and sometimes share my lab results, but that's where the collaboration ends. Fair enough: Most healthcare services are delivered this way and it's up to patients to play ringmaster.

Alas, I forgot this important lesson two days ago when I began taking the four new pills, vitamin E and two new types of insulin my doctors prescribed (these were added to the five pills and multivitamin I already take). Day one - bad headache and fatigue, which I chalked up to being overwhelmed by the changes, and little appetite. Day two - headache continues, little appetite, don't feel great but doing OK until about 5 pm, when I threw up. Hmmm. Threw up again at 10 and four more times last night. Now I'm worried about taking insulin when I haven't eaten much, especially since what I ate didn't stay down anyway.

I've been a bad ringmaster. All these med changes are wreaking havoc on my body (starting five new meds at one time wasn't such a great idea, I'm thinking). It's an experiment without any controls. My primary care physician would have been the most likely person to view this from a big picture perspective, but I saw her a week ago and most of the changes occurred after that visit. Two of the medications have side effects that can include "gastric distress," and I sincerely wish I had started them separately. Ah, such is hindsight.

This morning I woke up and, good news! no headache. I ate a scrambled egg and kept it down. But before putting a pill in my mouth I called my transplant center to speak to the person on call and, as luck would have it, my coordinator answered. She had me discontinue one of the pills (a gastric distress-causing med) and called in a prescription for nausea. Even without the nausea med, the vomiting has stopped. However, I now have diarrhea. Oh, fabulous.

Tonight I'm stopping the other gastric distress-causing pill and will see what happens. Tomorrow is my body's day to reach equilibrium; Monday I can start a smaller dose of one of the meds and, in a controlled manner, see if I can tolerate it and later in the week, I'll try the second one.

Note to self: I must pay attention. I'm the ringmaster; the lion tamer, if you will. It's up to me to bring order to the chaos.

Top photo by Claudia Meyer

Bottom photo courtesy of U.S. Library of Congress

Wednesday, July 21, 2010



I've been to five doctor appointments in the past week (one for my son, the others for me) and the deluge of information has exceeded the capacity of my brain. My personal health situation/treatment has undergone some significant shifts: I have pages of notes to review (so I don't forget anything) and lots of new meds to take (oh, and did I mention the possible new side effects? gastro distress, of course).

It's all a bit overwhelming tonight. Thankfully, it's much quieter from here (at least in the short run). A visit to the vampires tomorrow (back to the lab - sigh - with weekly lab visits for a while), a dental check next week and perhaps visit to the eye doc. With these in hand, it's simple weekly monitoring (I hope) and "tweaks" to meds (I hope).

Excuse me for now - I need a nap.

Photo by Keith Syvinski

Sunday, July 18, 2010

The Verdict: I Have Metabolic Syndrome

After reviewing my last set of lab results (8 tubes of blood - a personal record!) and considering the report from my recent biopsy, the concensus is that I have metabolic syndrome.

According to the National Institutes for Health,

Metabolic syndrome is the name for a group of risk factors linked to overweight and obesity. These risk factors increase your chance of having heart disease and other health problems, such as diabetes and stroke.

The five conditions described below are metabolic risk factors. You can develop any one of these risk factors by itself, but they tend to occur together. Metabolic syndrome is diagnosed if you have at least three of these metabolic risk factors.

A large waistline. This also is called abdominal obesity or "having an apple shape." Excess fat in the abdominal area is a greater risk factor for heart disease than excess fat in other parts of the body, such as on the hips.

A higher than normal triglyceride level (or you're on medicine to treat high triglycerides). Triglycerides are a type of fat found in the blood.

A lower than normal HDL cholesterol level (or you're on medicine to treat low HDL cholesterol). HDL is sometimes called "good" cholesterol because it helps remove cholesterol from your arteries. A low HDL cholesterol level raises your risk of heart disease.

Higher than normal blood pressure (or you're on medicine to treat high blood pressure). Blood pressure is the force of blood pushing against the walls of your arteries as your heart pumps out blood. If this pressure rises and stays high over time, it can damage your heart and lead to plaque buildup.

Higher than normal fasting blood sugar (or you're on medicine to treat high blood sugar). Mildly high blood sugar may be an early sign of diabetes.

Hmmm. I never did have a small waistline, even during my young skinny days, but I wouldn't quite describe myself as apple-shaped. Triglycerides and cholesterol have historically been good, too. But I've had to take blood pressures meds since my transplant. Also since then I've developed diabetes and take insulin injections twice a day.

Metabolic syndrome caused the significant build-up of fat in my liver that was detected in last month's biopsy, which is a key reason my liver function tests are showing poor results now. So here's what it's going to take to improve this situation:

* Lose weight (I've lost 7 pounds since April - off to a good start!)

* Control blood sugar better (I'm seeing my endocrinologist next week)

* Increase thyroid medication; TSH level is in range, but needs to be lower

I'm taking more meds, too - vitamin E, folic acid, higher dose of magnesium. I also may add another med after I see the endocrinologist next week.

What does all this mean for the Hep C treatment I'm currently on? I'll find out Tuesday when I visit my treatment coordinator. Apparently, the team at my transplant center has debated whether I should stay on or discontinue treatment, or even switch to a different type of Interferon.

I'll post an update after that appointment - and share some info I discovered about Metabolic Syndrome after liver transplant.

Photo by Jason Antony

Thursday, July 1, 2010

Same Ol', Same Ol'

Well, there's good news and there's bad news. This was the lead-in during the follow-up call after my liver biopsy.

The good news: The fibrosis in my liver has remained steady and is the same as my most recent prior biopsy, which was done in November 2009. The even better news is that the degree of inflamation has decreased on its scale, from 7 to 3.

And then there's the other news: There was 80 percent fat in the tissue sample. I don't know exactly what this measurement means, but 80 percent fat sounds bad no matter how it's explained.

As far as my liver is concerned, this is the same ol', same ol'. The biopsy results just raised more questions. If my liver is less inflamed than it was eight months ago, why are my liver enzymes elevated? And how in the world can there be 80 percent fat in my liver. In the biopsy I had in February 2009, there was 30 percent fat - and that was bad. But that November it was 10 percent. So in the past eight months, my liver is less inflamed but the percentage of fat went from 10 to 80 percent? Huh?

Fat in the liver can be an indication of fatty liver disease and/or metabolic syndrome, which contribute to poor liver health (among other things). Gotta get this sorted out. More blood work next week, with new tests to measure I'm-not-certain-what. Yep, it's more of the same thing. I'm hoping for some answers - fingers crossed!

Photo by Rose Ann