Second Opinions

I visited my gastroenterologist, the fabulous Doctor C, to keep him up to date on the progress of my treatment. I took him all my latest lab results, the two prescriptions the research doctors have given me to treat my pain and insomnia and the questions I had been accumulating about what I have been going through.

Doctor C is a great listener and takes as much time as needed to deal with his patients’ questions and problems. He went over my file and the latest test results I brought with me. He had a number of questions about the physical side effects of treatment. He asked about the nature and severity of them as well as any measures that were being taken to either counteract or mitigate their effects. I also asked him for his opinion of the drugs they had given me for the muscle pain (tramadol) and for insomnia (trazadone). He immediately pulled up his drug reference app on his smartphone and gave me the details. He told me that the tramadol was fairly standard for the pain. He went into more detail about the trazadone. He told me it was an antidepressant that had been around for over 20 years and that it was a very safe drug. He said that it had also demonstrated good results as a sedative. He told me that as an antidepressant the dose went up to 300 mg. and that as a sedative the dose was either 50 or 100 mg. I was prescribed one 50 mg tablet as needed. He told me that if it was not working at that dose to take two. It was perfectly okay and would probably be very effective.

He also questioned me quite extensively about my state of mind. He is very concerned about the side effects of interferon. He has had extensive experience in prescribing it for various conditions and has seen that it can be devastating to some patient’s mental state. He mentioned that his father had taken it for a lung condition and had become extremely depressed. He was a bit surprised that I was not on any antidepressants. He mentioned that when he prescribed the standard therapy for Hep C for his own patients he usually started a prophylactic regime of antidepressants right at the start. He suggested that I pay close attention to my mental state and that I should keep both the study doctors and him informed of any changes.

It was a good meeting and I think it shows the importance of having someone you trust on your team going into treatment, whether it be a research trial or the standard of care.
The books and advice sites all say that you should have a hepatologist as well as your primary care or personal physician in your medical team. I am not sure it is absolutely essential that you have a hepatologist. Doctor C is a gastroenterologist who has extensive experience with Hep C. As a hepatologist is a sub-specialty of gastroenterology, an experienced gastro person should be familiar with Hep C. If not, look around until you find one if you can.

You need to have a doctor who listens to you. That is the most important characteristic you need to find. You need to find the best mix of attention and knowledge in your doctor. This is especially true for a research trial. The research trial doctors are very good and want their patients to succeed, but I have never talked to a trial doctor for more than four or five minutes. The conversations are about specific reactions and not about the general state of my health, my state of mind or my progression of symptoms. Thus, you need to have a doctor outside the trial to backstop the questions, the decisions and the information you are getting in the trial. You need someone who is on your side.

Unless you don’t have a choice, and unfortunately there are lots of people in that situation, don’t go into a research trial unless you have a personal or primary care doctor who knows exactly what you are planning to do and what to watch for because of it. If you can, get a referral to a gastro person with Hep C experience or a hepatologist before the trial. You can give them the details of the trial, they can get your history and you can forward your results to them as you receive them. This way you can get the support you need when you have questions and concerns that may not be met by the study doctors.

Never be afraid to ask for a second opinion. It is your right as a patient. Get all the information you need to feel comfortable proceeding with your treatment be it drug trial or standard of care. You are the only person who has only your best interests at heart, so do whatever you need to defend those interests.

Steel Gray Lining

The day I found out I had Hep C was a crazy day. I remember talking to my doctor and him doing a very minimal job of explaining the disease. I remember being stunned by the news that I had a chronic, long-term and serious disease. I also remember that I was confused and puzzled about what might be the consequences of having this particular disease.

I went online immediately and Googled Hepatitis C. I went to the most reputable (in my mind) web sites – the Mayo Clinic, the Centers for Disease Control, Johns Hopkins – and starting to read about Hep C. The first thing I checked was what having Hep C meant in terms of living my life. All the sites said the same thing, the best thing you can do to assist your body in fighting the disease and in dealing with the effects of the disease is to stop drinking. I remember the “oh, shit” reaction to that as I realized that it would be a major change in my life. My wife and I usually had wine with dinner and there is nothing quite like a cold beer on a hot day or after a long days’ physical work. But I didn’t think much about it past that because when it is put in terms of “keep drinking, die faster; stop drinking, live longer,” it creates a clear-cut choice and one I didn’t have a great deal of trouble making. In the 14 months between being diagnosed and entering treatment, I drank on election night 2008, Thanksgiving 2008, New Years Eve 2008, Valentines Day 2009, My Birthday 2009, Calistoga vacation 2009, Thanksgiving 2009 and Monterey Vacation 2009. Even my Gastroenterologist didn’t have any problem with my behavior.

Then I read about the long-term effects of Hep C. The endgame of cirrhosis or liver cancer and possible transplantation all were very serious, but they were all very long-term. All the discussion of Hep C indicated that it was a disease that progressed slowly. You probably have it for years in the chronic state before it finally begins to produce symptoms. Even after it goes symptomatic, most people have a considerable period of time before it reaches the endgame state of treat, transplant or die. This is all somewhat reassuring in that it removes the pressure to decide Right Now what to do about the disease. You have some time to do research, to have more detailed testing done, to examine your personal life situation and then to reach a decision about what to do, what course of action to take.

The next stage of research was reading about the symptoms and side effects of having Hep C as an active infection in your body. The three I remember making an immediate impression on me were: fatigue, depression and brain fog.

They defined fatigue as a general lowering of energy. It is not something that automatically means exhaustion or collapse or some such. It means that you notice you just don’t have the energy to do either the same types of activities you have normally done in your life or you can’t do them as long or as intensely.

Depression is the fact that you don’t Want to do as much as you did before, or the things you used to like to do or just to do stuff at all. It doesn’t have to be a serious clinical state of having a hard time doing day-to-day activities or really having no desire to connect with your life. It can be a sort of general malaise that keeps you from being as excited about new projects, new activities or just doing the things that you enjoy.

Brain fog is a general decrease in your cognitive abilities. It means you have a hard time paying attention, keeping a train of thought, and have problems with short-term memory or concentration. You just don’t generally feel as sharp as you did in the past. You might notice you are forgetting more, or doing something that doesn’t make sense or not being able to remember why you are doing something or being somewhere (at least more that the normal level of forgetfulness and brain-lock).

I had all these three in spades and, as the Executive Director of my organization (known forever forward as DB the ED) said to me, maybe the steel-gray lining within the cloud of learning I had Hep C was finding out the symptoms I had been having had a definite cause. I had a definite reason for the behaviors I had been experiencing for the last few years. It wasn’t necessarily just that I had slipped into a mild depression; that I had somehow become lazy and shiftless; that I was feeling the onset of Alzheimer’s disease or some other mental depredations. I had a serious viral infection that produced these sorts of effects as a result of its activity in my body. This knowledge definitely produced a sort of relief. It’s a strange sort of relief to be able to say that depression, fatigue and mental deterioration are the result of a long-term, liver-destroying viral infection. But to have a solid reason that is not dependent on the variable biochemical definitions of depression, clinical or otherwise, somehow gave me a more solid form of hope.

It is definitely Not a silver lining, but a lining it most definitely is. And steel-gray or not, it gave me a much firmer grasp on my recent past and a clearer picture of the future.