Three Years After My Liver Transplant, Where Can I Find Information?

Jaundice. Rejection episode. Oy!

Here's the diagnosis:

Liver with mixed portal and lobular inflammation, bile duct damage, parenchymal collapse, endotheliitis, steatosis, cholestasis

I won't bother to add the detailed "Comment" because it will only further confuse us all. A few days ago I received a copy of the pathology report on the liver biopsy I had last Monday. I'm no doctor, but usually I can find definitions for the terms I don't know and then cobble together some glimmer of understanding. We'll know more when I have bloodwork done Tuesday.

I continue to have trouble finding information about transplant-related illness and complications that crop up more than a year or so after liver transplantation. Statistics about one-, three- and five-year survival rates are readily available, but not much else. I'm determined to continue to search and share. Please leave a comment if you have experiences or knowledge to lend to the rest of us.

Photo by John De Boer

Sorting it Out

We've entered new and mysterious territory. Preliminary results from Monday's biopsy lead my docs to believe that I'm having a rejection episode. That said, there was a great deal of inflamation and they are waiting for the detailed report they'll receive tomorrow to know better what's happening.

Jaundice is most definitely at play. My eyes seemed a bit clearer Monday and yesterday, but are very yellow again today. A quick liver panel done Monday showed my bilirubin had increased to 11.8 - quite a jump from 7.8 last Thursday.

Current protocol: Steroids. Visiting nurse administered them via IV yesterday and today. Tomorrow I switch to pills. Also hoping for more feedback tomorrow based on detailed lab results.

I'll post more as I learn more. I can't find anything on this topic online, at least as it relates to a timetable this far after transplantation. If anyone else needs the info I hope to help them find it here.

Photo from Cleveland Clinic Journal of Medicine, October 2009

Deja Vu, The Bad Kind

Jaundice. I have it again. Yellow eyes and intensely yellow urine. These symptoms correlate with the unbelievably bad results of the blood tests that were drawn Thursday. AST is 1512 (normal range is 0-40). ALT (also 0-40) is 812. Total bilirubin (0-1.2) is 7.8.

This bucket of bad news elicited an "Oh, my God!" and a "What the f*#@!," then quickly transitioned into tears. Jaundice is something you get BEFORE your transplant, not almost four years afterward. I'm especially unnerved by this turn of events - of all the challenges, issues and health problems I've juggled since my transplant, this is the first time I'm dealing with a condition I had before it. Does this mean my new liver is toast?

I'm more worried than I've been in ages. Monday I'm having a liver biopsy (my second in 10 weeks). After that we'll learn more and deal with it then.

God, thank you for giving me time to get my son settled into his freshman year of college before having this fall into my lap. Dealing with both at once might have pushed me over the edge. Oh - and God, please help me find some grace and peace of mind. Amen.

Photo by Kenn W. Kiser, morgueFile.com

I'm Not Exaggerating - I'm Really Sick!

EUREKA! Someone has put into words some of the feelings I've struggled with for the past four years.

In an article titled "Words that Wound, Words that Heal," Lucinda K. Porter, RN describes how frustrating it can be to have people say, "But you look so good!" when talking to someone suffering from a chronic illness. Whether the statement is honest or not, it can spark an unintended, negative reaction from the recipient.

In the Healthwise feature from the August 2010 HCV Advocate Newsletter, Porter described her personal experience on the matter:

These comments are well-intended, but simultaneously invalidating. I recall late in my [Hepatitis C] treatment, someone saying to me, “You don’t look sick.” My hair was thinning, my fingernails ghastly, and I had a nasty, visible rash. I was nauseous, depressed and irritable. It took every ounce of restraint not to say, “And you don’t look stupid or careless.”

My sentiments exactly. I continue to feel unwell even today, nearly four years after my transplant, which many people don't comprehend - and a comment of "... but you don't look sick," to my ears, is synonymous with "Oh, you must be making this up." The biggest factor at play isn't what they say, but how I receive it - I can't believe I'm still having so many health issues, I should be able to "suck it up," I've become a terrible wife and mother.

Porter offers some sage advice on how to communicate with people who are ill. She includes recommendations from Susan Milstrey Wells, author of A Delicate Balance: Living Successfully with Chronic Illness:

If someone says you look great when you’ve admitted feeling awful, Milstrey says, “Looking good while feeling bad takes talent!” and she proposes simply saying thank you. If they express that you look far too good to be feeling sick, then Milstrey suggests, “Yes, it’s even hard for me to understand how I can feel so bad when I look so good.”

The other side of this equation is how we talk to others when they are ill. It would be simple if we could speak to others as we would want them to speak to us, but we are all so different. Let’s start with what not to do:

Don’t judge – Even if you think the person is exaggerating, remain compassionate.

Don’t tell them about a worse experience – You may think it helpful to tell someone who is struggling through HCV treatment about how you scaled Mt. Everest without oxygen during your treatment, but it may make them feel inadequate and hopeless. Keep your experiences to yourself unless you think they will help.

Don’t tell them how to feel – “Get over it, you’ll be fine” is the last thing we want to hear when we are ill.

Don’t over-sympathize – Pity doesn’t help and it is demeaning.

Here’s what you can do instead:

Listen – Sometimes we communicate far more with sincere, attentive listening, than we do with words.

Offer support – You can give on-the-spot support, such as “I don’t want to pry, but if there is something going on and you want to talk about it, I’m happy to listen” or offer help, such as, “Is there anything I can do?” Don’t offer to help if you aren’t prepared to follow through with a “yes” or a firm, “I’m not able to do that, but I can do such-and-such.”

Relate – If you had similar experiences, and your intention is solely to show empathy, then it is fine to relate your experiences, as long as you aren’t trying to show one-upmanship.

Great advice for us all. And I'm going to add one final bit of counsel: Be sincere. I can tell if you aren't and that hurts most of all.

Photo by Jon Wisbey

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

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.

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