What I Wouldn't Give for a Good Night's Sleep...

Chamomile tea, a nice warm bath, counting sheep - when it comes to sleep, you name it, I've tried it. But insomnia still dogs me, as it has since I was diagnosed with end-stage liver disease and told that I needed a transplant. While everyone else slumbers, I'm awake and watching TV, tired but unable to sleep. Often, it isn't until 5 or 6 a.m. that I doze off, not restfully, feeling uncomfortable about all the things I'm missing as I sleep the day away... and then the cycle repeats itself.

I've come to learn that I'm not alone. A PubMed article, "Role of Sleep Disturbance in Chronic Hepatitis C Infection," posted on the National Center for Biotechnology Information, U.S. National Library of Medicine website, reveals the following:

Chronic infection with the hepatitis C virus (CHC) is associated with physical and mental symptoms including fatigue and depression that adversely affect quality of life. A related complaint, sleep disturbance, has received little attention in the literature, with the exception of sleep changes noted in cirrhosis and end-stage liver disease. We present an overview of studies indicating sleep problems in patients with CHC, with about 60% to 65% of individuals reporting such complaints. Evidence suggests that impairments in sleep quality exist independent of antiviral therapy with interferon-α and prior to advanced stages of liver disease. Further investigation of sleep disturbance in CHC patients with a mild stage of liver disease may provide important information on disease course as well as allow additional opportunities for patient support.

Unfortunately, there is no "cure" for insomnia; experts stress the importance of working with your doctor to find a solution. A Guide to Hepatitis C, Treatment Side Effect Management, is a fact sheet on the HCV Advocate website that offers basic suggestions to address insomnia, including the following:

• Make eight hours of sleep a regular habit. Sleeping less during the week and trying to catch up on the weekend doesn’t work

• Try to go to bed at the same time every night

• If you have a clock that is always lit, turn it so you can’t see the time

• Exercise every day

• If you nap, keep it short and early in the day

• Try reading before bedtime, but use a low-watt bulb

• Do not eat during the few hours before bedtime, but don’t go to bed hungry. If you eat something, choose food that is light and nutritious. Avoid spicy or greasy foods

• Take a hot bath before retiring

• If you feel you need to worry, tell yourself that you will only worry in the daytime. Make your bedroom a fret-free zone. Learn relaxation techniques to reduce stress and worrying

• Listen to relaxation tapes before retiring

• Do not lay awake in bed for more than 20 to 30 minutes. Get up, do something boring for a little while, and then go back to bed

• Your bed is for sleep and sex. If you are not doing either of these, stay out of bed

Hopefully, some of these tips will help. Here's wishing Sweet Dreams for us all.

Photo by Philippe Ramakers

Sometimes I Get Depressed

Please pardon my absence. The past three months have been busy, but enough of that - it's time to blog again.

As of my last post, I'd experienced a rejection episode and was working with my docs to recover from that. Although I expected to have all that behind me by now, some of the challenges continue today. My blood work results are finally beginning to show real improvement, except that my bilirubin level still is not in the normal range.

It's taken a mountain of medication to get to this point. I've stopped, started and adjusted more meds than I care to count. Although I was initially expected to have discontinued the prednisone by now, I continue to take a small dose daily. I'm also taking CellCept. Additionally, my potassium and magnesium levels are low and I'm taking meds for that. In a nutshell, taking meds is like eating a small meal. And then there are the 4 or 5 insulin injections daily...

This frustrating regimen, which has been VERY slow to work, combined with the stress of the holidays has left me blue. I'm depressed. I hate feeling like this: In fact, last week I was in tears for several days. What the... ?! This week I was determined to turn the corner, so I created a "to do" list each day. Every item I crossed off was an accomplishment (something I had control over!) and the sense of satisfaction has been very helpful. Tomorrow I'm going to get a pedicure as a reward. I'm also going to try to get a little exercise.

I'm also going to do more blogging. A number of interesting research projects have recently been published and as I read up on them, I'll share what I learn.

Photo by Mattox

Liver Transplants and Depression: What the Research Shows

Depression is fairly common in the world of liver transplantation. The blues often set in before surgery: An estimated 31 to 50 percent of patients awaiting transplant experience some degree of depression. Even after transplant surgery, 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).

As I looked for information about liver transplants and depression, what surprised me most was the lack of information on this topic. Granted, I only can access the research, journals and reports available online to the average layman who doesn't subscribe to medical search engines. Nevertheless, given the prevalence of depression in patients, I expected to find info more readily accessible.

If you have information on this topic, please leave a comment. Information is power... and to people (like me!) who are feeling depressed and tired, it could be a wonderful antidote.

Post-Transplant Depression: My Friends Stage an Intervention

Continued from my last post...

Apparently, my closest friends had noticed my unending depression, so like all concerned girlfriends, they talked amongst themselves. A LOT of them were in on the discussion, it seems - at least six that I know of, so far - and they also conferred with my husband about how I always seemed tired, hardly left the house, didn't socialize much, looked like crap and so on. Essentially, they felt that I was "stuck" and needed help - professional help - to move forward.

And so, one girlfriend called to say that she'd be near my home Friday morning and wanted to stop by for a quick visit. "Sounds good," I said. "Looking forward to seeing you."

On her way to my place Cari called to tell me that she would arrive soon. "By the way, Carolyn is stopping by, too," she said. Wow, I thought, This is great. It's going to be fun to catch up. I'm so gullible sometimes. Duh. It's Friday morning and two of the busiest people I know are skipping work to "pop in and for a quick visit." Yeah, right.

The gals arrived and with coffee mugs in hand, we settled into the living room and chit-chat ensued. Within a couple of minutes, though, the conversation turned serious. They told me how they had observed my blues, the rut I was in, the considerable duration of my depression. Carolyn and Cari confessed that they had spoken to others, including my husband. They explained their wish for me to work through my depression, and their belief that I needed professional help to do so. They told me about a good counseling resource that accepted my medical insurance and offered a few names.

After a few silent moments of pondering, I had to agree with them. I needed professional counseling to help me through my depression. The cost was a concern (we are BROKE!), but I pledged to make the necessary phone calls and obtain the assistance I needed.

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.

My closest friends also love me enough to intervene, sit me down and tell me the harsh truth, even though it might hurt me to hear it. Not just anyone can get away with that. And there aren't many people I love and trust enough to hear clearly, even when the news is bad. Each of these friends is worth her weight in gold.

So I did as promised. It took about three weeks altogether, but I received authorization from our health insurance company, made an appointment and finally met with a counselor just before Christmas. I'll tell you about the appointment and about a long, difficult conversation with my husband - which proved to be my "Eureka!" moment - in another post. My next post is going to address transplants and depression, and some of the things I've learned about this issue and how it is - or isn't - managed through the healthcare system.

New Year, New Attitude

It's January 1, 2009 and I know many people are elated to see 2008 end. It was a very tough year for me and my family, but there were plenty of bright spots, too. I would categorize last year as "transitional," with lots of changes, challenges and learned lessons.

One of the most significant lessons I learned was about my health and ongoing depression (since my transplant; it worsened over time). I'll be posting about that on this blog over the next few weeks - many, or most, transplant patients (and people with other chronic illnesses) struggle with the blues in some fashion and perhaps reading about my experiences will prove helpful, in a what-not-to-do way.

I look forward to 2009 with a new attitude, with optimism and hope, reflecting on the message I discovered in a fortune cookie:

"Your path may be difficult, but will be rewarding."

Photo credit: Radu Andrei Dan