My Blood Test Results Don't Make Sense

At the beginning of the week I had blood drawn and today I received a copy of the results. Some of the numbers were alarming and others had me shaking my head in disbelief.

The good news - most of the tests in my hepatic function panel (ALT, AST, GGT, etc.) are better than they've been in ages. Seriously? My liver is cirrhotic, but on paper, these tests indicate that it's doing fairly well (for me, that is - it's all relative).

Other results aren't so wonderful. My MELD score has increased to 12, a jump of three points in five weeks. The docs are chalking it up to an elevation in bilirubin and don't seem too concerned. I'm praying that it's not a trend.

Additionally, my doc is running more tests now, one of which is AFP serum (it indicates the presence liver tumors). The normal range is 0 - 8.3 and mine is 106.2. ONE ZERO SIX POINT TWO. Holy crap! My doc believes the number is elevated because of my aggressive Hep C, not because I have a tumor. Six weeks ago I had two CT scans and neither showed a tumor, which is a good sign. But I'd be lying if I didn't admit that I nearly fell off of my chair when I saw that result. I'm grateful that it had been explained to me before I saw the results.

Up next: More blood work in three weeks and an endoscopy (where a scope is run down my esophagus). And I'm not certain what else, but I'll keep you posted.

Photo by Heidi Marasigan

Walgreens Came to My Rescue Today and Gave Me Great Customer Service -- United Healthcare's Specialty Pharmacy SUCKS

Nothing like a bucket of bad customer service to kick me out of my misery. Today, Walgreens was able to solve a problem in about ten minutes that UHC's in-house specialty pharmacy hasn't been able to fix in a week. My local Walgreens pharmacy has come through on so many issues - large and small - over the years that I am VERY pleased to brag about how good they are.

Conversely, there are a couple of meds that I'm required to order through my United Healthcare's (UHC, my health insurance provider) own specialty pharmacy. Although I've spent at least about an hour each day talking to a customer service rep trying to fill the order for my immunosuppressants, the matter is unresolved. Each person was nice, but no one got the job done.

At this point, the whole matter has become a comedy of errors and UHC looks like one of the worst-run companies aaround.

Walgreens, however, has been awesome.

And someone at UHC is going to receive a phone call from me, and (forgive me) shit WILL hit the fan!

No! I Wasn't Ready for This!

Nine.

That's my meld score. My transplant coordinator told me and my husband in early July, as my release from the hospital for hernia surgery was being coordinated. (It was repeat surgery to try to fix the incisional hernia that developed during my original transplant: The surgery didn't work then and doesn't seem to have worked this time, either. But that's another story.)

We had my surgeon do a liver biopsy while he was in the neighborhood, so to speak, and the lab review showed that my transplanted liver is cirrhotic. So my coordinator did some math and I'm a nine.

I've spent the past month trying to find a graceful way to share this news and I'm still struggling. The hardest part - and oh, my God it was so hard - was telling my kids. They are older teens, but they still need a Mom. It's almost certain that I won't be around long enough to see them graduate from college, or marry or have granchildren. That's just not fair.

There's also so much I want to do with my wonderful husband.

I'd handle this better if I could reach a point where I'd focus on the many tasks that need to be tackled, like a will and organizing papers. However, the past five weeks have been spend recouperating. Beyond that, I still can't talk about it without crying.

What about clinical trials? Those new Hep C meds? A second liver transplant? All very unlikely for many reasons, which I'll explain in future posts.

Please excuse the pity party. I'll find helpful info to share soon. I wish every person reading this blog good luck because there's a lot of it to be found.

Photo by Alaina Cherup

Not Again! The Itching is Back

About a week ago the palms of my hands began itching. My family and I were on a week-long roadtrip and I assumed it was due to the hotel laundry soap or lotion, perhaps a plant I had touched - who knows? But after a couple of days the itching spread and worsened and when I had bloodwork done this week, the mystery was solved: My bilirubin is high and I'm experiencing pruritus.

I struggled with this four months ago. Fortunately, after a few weeks my bilirubin level decreased (and finally fell into normal range) and the itching went away... until now.

There are few things more frustrating than non-stop itching. I have spots on my body that are red and irritated from scratching and I'm starting to get a bit grumpy. Ugh! I'm having hernia surgery in four days and can't imagine the combined pain-itching experience afterward. This could be interesting... and not in a good way.

Photo by SuperFantastic

Saving Your Liver May Cost an Arm and a Leg

As noted in my most recent post, the FDA has just approved two new medications to treat Hepatitis C: Incivek (Vertex's telaprevir)and Victrelis (Merck's boceprevir). According to www.drug.com, Dr. Douglas Dieterich, a professor of medicine in the division of liver diseases, at Mount Sinai School of Medicine in New York City, said that the approval of Incivek and Victrelis "represent the first real advances in the treatment of hepatitis C in 13 years."

This advancement is the best news Hep C patients have received in years - but celebrations may be premature. The astronomical costs of these meds could be an overwhelming barrier to treatment.

A May 25, 2011 post on the HBV and HCV Advocate Blog featured the Fair Pricing Coalition's stance on the price set for Incivek:

...the Fair Pricing Coalition (FPC) is appalled at the price set by Vertex for Incivek,” said FPC member Lynda Dee. “The FPC is concerned that the exorbitant wholesale acquisition cost (WAC) of $49,200 per 12 week course of Incivek treatment will adversely affect the ability of people with HCV to access this new drug and that it will also set an excessively unreasonable future price point for the many HCV drugs in the pipeline.

“Merck’s Victrelis costs $48,400 for 48 weeks of treatment. Now Vertex has set a price approximately four times greater than Victrelis for twelve weeks of Incivek treatment. While we welcome a shorter course of Incivek treatment, both price points are outrageous.

The FDA label recommends that 12 weeks of Incivek be taken with pegylated interferon and ribavirin for either 24 or 48 weeks, depending on a patient’s response to the regimen. The WAC price for 48 weeks of HCV treatment with pegylated interferon and ribavirin is approximately $30,000. The $49,200 WAC price for 12 weeks of Incivek will more than double the already exorbitant 48 week price of pegylated interferon and ribavirin.

The FPC also cites an expected "...30% increase in the cost of treating side effects caused by use of the new HCV protease inhibitor drugs."

More information is available in the story and at http://fairpricingcoalition.org/.

Just last night I watched a television news show about the high quality, low cost health care available in Thailand, where hospitals are actively working to attract patients from other countries, including the US. My heptologist traveled there earlier this year and also commented on how good the health care is. Maybe we should move?

Photo by Marc Garrido i Puig

Great News for Hepatitis C Patients (Well, for Some of Them)

Along with other people infected with the Hepatitis C virus, I was elated when the FDA approved two new medications - telaprevir and boceprevir - both of which have proven much more effective in achieving sustained virologic response (SVR) than the current course of treatment. For people like me who have genotype 1 Hep C, the hardest to treat, the news is especially good.

Yet I just learned that treatment with one of these new medicaations may not be in my immediate future, if at all. Turns out that immunosuppressants have a negative interaction with the drugs, so liver transplant patients with Hep C can't tolerate them; at least, not for now.

Well, this just sucks. For five years we've waited for these drugs to reach the market, hoping that this would clear my Hep C and give me a chance to be realistically hopefully, and seriously consider the future, make plans, expect to be around for a good long time, enjoy some grandchildren.

But right now, the future just seems dark.

Photo by nikstyles

There's a What?! in My Ear?

Back in January I had an ear infection. It seemed silly to have this childhood illness at 51. But I've had chronic problems with my left ear since the age of two (I call it my "Achilles Ear"), so I shrugged my shoulders, saw an ENT, took the prescribed antibiotics and ear drops and assumed all was fine.

Two months later the infection was back. This time I called my primary care doctor, who phoned in an antibiotic and ear drops. Again, it cleared up.

Yet two weeks ago, the ear infection appeared for the third time. Obviously, this is a problem that needs more attention. Back to the ENT, who did a culture. Yesterday the nurse called and said the doctor wants me to use the ear drops only. Oh, and she also said that I have a staph infection.

Whoa there! Staph? That's not good. I realize staph is found on our bodies and one study I found showed that 15 percent of ear infections are caused by staph. But I'm immunosuppressed, which makes me a tad bit worried. I can't find anything online that explains what happens to people like me who have staph infections.

Tomorrow I'll talk to the ENT's nurse again, to learn what type of staph was found. Then I'll call my transplant center and, hopefully, find out what this means and what must be done to resolve the problem so it doesn't recur.

Photo by Robert S. Donovan, www.everystockphoto.com