Overload

I'm EXHAUSTED!

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

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

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

Liver Numbers Continue to Rise; Next Stop - Another Liver Biopsy

Yesterday's lab work results weren't so great. Liver enzymes, GGT and alkaline phosphate rose again. A liver biopsy is the next step in trying to sort out what's happening. So next week I'm off to my transplant center for what has become a familiar routine. And this rollercoaster ride continues...

Photo by clix (Brazil)

Still Riding the Hep C Rollercoaster

In May 2006 I learned that Hep C had damaged my liver so badly that I needed a liver transplant. Thus began my rollercoaster ride, which begat this blog. And that ride continues ...

In January I started treatment on pegylated Interferon and Ribasphere and last month, at the 12-week mark, we learned the treatment hadn't cleared the Hep C virus from my system. In other words, it didn't work. It was no surprise to us: After all, the treatment didn't work 2 1/2 years ago (seven months after my transplant) when I was placed on it.

But there was a bright spot in the results - my liver enzymes, Alkaline and GGT all had dropped significantly and this was news to celebrate. In spite of research indicating no benefit from staying on treatment for "maintenance therapy," we decided I would continue on it because of the improved impact on my bloodwork. However ...

My last three sets of blood test results show a steady rise in liver functions. AST and ALT are closing in on 200 and GGT is 519! What the hell?!

This is virgin territory. It never occurred to me that the numbers might increase while I'm on treatment. Candidly, I'm not comfortable in this realm of the unknown.

Next step: Repeat basic labs in just over a week, along with PT-INR and Hep C viral load count. Depending on what those results show, my doc may order a liver biopsy sooner than later. And I'll keep riding the rollercoaster, hanging on for dear life.

Photo by Lars Sundstrom

Saving Money on Meds

Yesterday I received the best possible kind of mail - a card certifying my enrollment in a program that will save me up to $200 off the cost of my immunosuppressant. When you consider that my copayment for this med just increased from $360 to $600 per year, the card is like manna from heaven.

My sincere thanks to the pharmacy service rep who mentioned the Prograf Value Card program and enrolled me in it. I'm grateful for any savings we can gain, given that this is but one of the medications I take daily. I'm not familiar with the eligibility requirements for the program but found the online website to enroll.

Post-transplant medication costs are significant. We have good medical insurance but our out-of-pocket copayments exceed $1,700 per year. That doesn't include my cost for the pegylated interferon and Ribasphere I currently take, which an additional $500 per year (a drop in the bucket compared to the many thousands of dollars these meds cost at "retail").

If you take Prograf and could use assistance paying for it, perhaps this can help you. Good luck!

Photo by Will Thomas

The Miraculous Merits of Magic Mouthwash

One of the ongoing side effects I’ve experienced on my Hep C treatment is sensitivity in my mouth. The area under my tongue, the inside of my lips and even spots on my tongue are uneven – not smooth like they should be – and feel as though a sore could break out any time. Some areas have been painful and I’ve had occasions where my teeth ache and it hurts to bite down, but not in the “I need a root canal” sense.

At the most recent visit to my primary care doctor I described the discomfort and with a stroke of her pen, Dr. M. prescribed relief for this annoying side effect that’s plagued me for more than two months.

The miracle: Magic Mouthwash. This stuff is amazing. Swish just a bit of it in your mouth and it immediately numbs and soothes.

Magic Mouthwash is often given to people with oral ulcers, especially cancer patients undergoing radiation or chemotherapy. I’d never heard of it until a couple of years ago and forgot about it until the doc wrote my prescription.

Please note: While the mouthwash has a cute, consumer-friendly name, it is mixed by a pharmacist according to the prescribing doctor’s specifications. It is not available without a prescription.I’m always searching for ways to ease the discomfort or challenges caused by my Hep C, transplant, medication, whatever. In my experience, people sharing their experiences with others can be as beneficial as a visit to the doctor.

If you’ve experienced similar issues or other problems, please leave a comment and describe how you dealt with it. I appreciate any and all input.

Photo by Mathias Alvebring