Rarely Posting

I rarely post on this blog anymore. I don't think anyone reads it, and I enjoy the interaction on a forum or social site. I post on Hep C Nomads, and Facebook, and use email more than I used to.

I may still post if I want to ruminate - clarify my thoughts by writing to myself.

I'm enjoying a renaissance. My life is so much better now that I feel better. I stayed with the ribivarin and interferon treatment as long as I could stand it, not as long as prescribed. Still, I have no detectable Hep C virus now. I'll test again in December, and then the following December.

It's possible that the treatment knocked out more than one virus, as it stimulates the immune system to recognize a virus as an invader and kill it.

My attitude now is grateful and positive.

Keystone Kops

On a Hep C forum, someone asked a question about how important viral load numbers are. She had been told her numbers were too low for treatment. This matters because people have better chances for success in treatment if it is initiated early. The longer one waits, the more the liver is damaged. There is in fact no reason to base treatment on the numbers. That answer, and some of the process I describe below, makes me think of the old Keystone Kops, who ran around, got in each other's way, and made efforts which no rational person could have expected to be effective.


My diagnosis came in 1997, when I gave blood. The viral load test wasn't done until 2002, when I told a physician assistant, who was doing my physical, that I wasn't sure I had Hepatitis C, I might just have antibodies. I told her I thought the viral load test was never done because it was expensive, but also that since it wasn't done, I thought my physicians didn't think I had an active case. She ordered the test immediately. After that I was referred to the health plan's GI department. The doc there said I had live virus. She refused to tell me the reading on the grounds that people obsess over the numbers. She also told me more than once that treatment was reserved as a last ditch effort to keep people alive when they were waiting for a transplant. Years later the department was reorganized. I finally got treatment starting October 2008 and stopped June 2009 with no detectable virus. I have come to terms with my dismay over finding that in the time between 2002 and 2007, I had developed Stage 1 cirrhosis, and that many people in different parts of the country had been treated years before I was, as soon as HCV was diagnosed. Whether a person is treated for HCV depends on where they live and who is on their medical care team, not on their viral load or how sick they are.

Enjoying Life

On Saturday I enjoyed three hours of dance performances by small dance troupes, and dance schools, courtesy of the Recreation Department and organized by Eveoke Dance Theatre. Several gave skilled, interesting combinations of Modern and Ballet. I was strong enough to sit through it, and then go on to an afternoon service at the Unitarian Universalist church. The next day, I was very tired and needed lots of extra sleep. That's okay. My visit to my sister in Santa Barbara went well. The travelling didn't bother me. So much stronger.

Memory Less Acute?

I never had a good memory for names, and now it's abysmal. Many thanks to family and friends who rattle off lists of names of actors, opera singers, politicians, even family members, to help me find the name I'm struggling to say.

The book (by Oliver Sachs) and film, "Awakening," come to mind often. Sometimes people would become very still, and be stuck like that unless someone touched them, jogged them somehow. I'm experiencing a very faint shadow of that stuckness at times.

Stoicism has not served me well in the past. "Everybody has problems," does not justify enduring difficulties without finding out if something can be done. The following quote from Hep C Nomads, a forum, stirs me again.



Post tx Problems

Postby ( ) » Thu Aug 13, 2009 9:11 am
Hi Gang. :)

I did two courses of tx and found it very difficult both times to return to the previous level of "mental agility" that I was accustomed to pre tx.
At first I suspected that I was simply getting old and the "mental fog", the "confusion" and "appalling memory" I was experiencing was due to nothing more sinister than that.
The reason I'm posting this is because I'm curious as to how many of us have experienced this state of affairs because I've just read this.

"I have been treated with interferon and ribivirian in 3 seperate treatments. I was a courier, avid reader, the family navigator from the age of 8 on, self taught in many areas.
As a child, my father made me go with my mother when we moved to a new base in the military, I ALWAYS naturally knew how to get home. Before treatment I was a courier in the St Louis area because I loved to drive and one trip to deliver, the route was a permant memory.

Last month I had an appointment at a Dr.’s office in Lexington KY, I actually looked at the map to make sure I knew where I was going…….. 2 hours later I was in the middle of a panic attack and late for my appointment after leaving early enough to stop at the mall on my way. I couldnt remember with a map how to get there, and had to call the Dr’s and get directions from where I was.

I can read a book, and if I put it down before I’m finished, I have to back up a page or 2 so I know what I was reading. I guess, looking on the bright side if there is one, I can now save money on books, because I can read the same book 3 months later, and not have a clue how it ends, untill I read it again.

So how do I get my memory back…… E Culli

Dr. Silverman responds:

Both you and Dennis S (author of comment #4, above) experienced cognitive deterioration after undergoing ribavirin therapy. Just like certain drugs that are commonly used as chemotherapy agents in the treatment of cancer, ribavirin is a “nucleoside analog” — a class of drugs resembling nucleic acids, which interfere with synthesis of DNA or RNA, or both. And just like many chemotherapy agents, ribavirin can cause side effects like gastrointestinal distress, anemia, hair loss, weight loss, fatigue, mutations leading to birth defects and generalized discomfort. Use of the drug in patients undergoing treatment for viral infections has also been associated with depression, insomnia and impairment of memory and concentration.

Though doctors may say to either of you that what you went through “was not chemo,” your brain may feel that’s a “distinction without a difference.” And for doctors to say that “even if it were. you would have recovered by now,” requires them to ignore the many other people who are also 10 years out (or longer) from their last dose of cancer therapies but who continue to have problems with memory, concentration and other cognitive abilities.

The bottom line is this: though it is not uncommon, unfortunately, for the kinds of symptoms you have experienced to be trivialized or brushed aside by some doctors — whether occurring after chemotherapy for cancer, or after ribavirin+interferon therapy for hepatitis C — it doesn’t mean that your symptoms are not entirely real, and it doesn’t mean that they are not related to the therapy you received.

It may mean that you need to talk to a different doctor, one who will take your symptoms seriously and steer you towards therapeutic approaches aimed at achieving your recovery from them. In the meantime, as a head-start in addressing the issue, “how do I get my memory back?” please see my response to Bob H.’s comment (#1), above."

If this sounds familiar, and I suspect it does, then you can find the passage I've quoted here.

http://consults.blogs.nytimes.com/2009/ ... ts-memory/

Post-Treatment Progress

Mon Aug 03, 2009 11:58 am
It's been five weeks since treatment stopped at 32 weeks. The tormenting rash is almost gone. My skin still flushes and itches, especially on my back. My concentration has improved. The oddest thing is the return of the ability to stay awake all day. I walk almost every day, building myself back up. Saturday I walked a lot, much of it uphill. That's encouraging. For the first two weeks or so, I ate a lot, including lots of sugary stuff. That compulsion has calmed down. I lost a couple of the pounds I had regained. Overall my weight is still down 20 pounds, which should help with fatty liver. I'm discarding my biggest hide-your-body clothes and now have a few things that fit. Wouldn't it be great if the virus stays suppressed and does not resume damaging me?

New Shoes

I have new shoes. I feel so much stronger, I was able to go shopping. Replacing things has been put off such a long time as too much strain on the little energy I had during treatment.

Stopping Treatment

Treatment stopped in mid-June. My health just became worse and worse, and I could not take care of myself adequately. I was taking ribivarin and Pegasys, a form of pegylated interferon, self-administered.

Symptoms: Rash and thickening of skin increasing since mid-November.
It was like poison ivy on top of a bad sunburn.
Itching, somewhat helped by cool water, hydrocortisone ointment, and recommended lotion, Gold Bond.
Flushing, the heat radiating from my skin four to six hours at a time. Ice packs help, but I can't sleep and apply ice packs at the same time.
Fatigue and increasing weakness and dizziness.
Confusion, inability to concentrate on tasks.
Debilitating effects of isolation and poor nutrition.

My skin is already healing. I have been able to stay up more hours, though I'm still not sleeping much at night. It's a relief to make a decision and turn my attention to regaining some strength, and spending more time with people.

If I try treatment again, I will know that I need much more help for daily life than I thought.

Enough, Already

After seven months, no more treatment. Too much suffering, too debilitated. It will take months to clear out the the virus-killers. My skin has been slowly recovering elasticity and growing less damaged and tormented.

I'm at peace with my decision. Now I'm staying up hours more, continuously, seeking to coordinate with the rest of the world's activities and expectations.

Update

I feel lousy. Good news - no detectable virus.

At Peace Tonight

It's Friday again. I've taken my Peg-Intron shot and ribivarin capsules.

I've been in bed most of the week, with a few short walks, mostly to the grocery store. Today I read and enjoyed several articles in WIRED Magazine. What a relief to be able to think and take in information and ideas. Most likely this will not be possible again for several days, but it's comforting. It helps me believe there may one day be an end, or at least a significant amelioration, of my fogginess and low energy.

Did I tell you about the inflamed, red, itchy rash on the upper torso? Don't ask!

The second viral load test again showed significant decrease in the virus, meaning it is worth while to continue the treatment. The goal is "no detectable virus" at the end of treatment, and again six month later. Alevai - from your lips to God's ears.

Happy New Year!

Thanks, pixie and Elizabeth for your comments. Thanks to everyone who responded to my good news by phone or email.

During 2009, I will clear the virus. In 2010, I will resume some of the activities for which I am too tired now.