A few miles back...

The following is a post from a support group website that I belong to written a couple weeks ago. It casts some light onto some of the things that I have been experiencing. One of the things that is so striking to me already is that I am going to have to be my own case manager and advocate. It is unnerving how common this disease is and how little resources and support there is available in South Carolina.




Passing on the Queen

Sunday, August 2, 2009 | A Rambling story
 

Thursday I  went to the Gastroenterologist  all fired up and ready to do battle! I took a list of questions in with  me and was in a pretty good mood. The nurse that did my vitals told me that I would love Amy, the Nurse Practitioner, and that she was the "Queen of Hepatitis C". Things were looking good.

When Amy came in she was very reassuring, letting me know that I am probably not as much of a Biohazard as I was feeling the other day! In spite of what the nurse at the urgent care told me, I probably have not given Hep C to my kids or even my wife!  I knew that….but hearing her tell me was very helpful. (note: Thank GOD, I now know that I am the only one in my family with Hepatitis C!)

Things were going pretty well and then she began to talk about treatment. As she started in talking about responders and non-responders I could feel myself starting to drift off.  "It is chemotherapy but it is a different kind of chemotherapy, milder and over a longer period of time than for cancer". (Is she trying to tell me that this is going to be a kinder, gentler chemo? Hmmmmmmm…I'm not sure that I buy it)…..

…….At this point I can feel myself drifting up towards the ceiling. My brain is also drifting, but in a different direction, having apparently cut ties with the rest of my body.  "...and sometimes patients who have successfully cleared the disease from their system, relapse after 6 months….".   I am vaguely present.

"Do you have any questions?"

I glance at my list in my hand and answer timidly, "no, thank you for your time" (shhhh…don't wake the dragon). I have quietly conceded the days battle.

I have left almost completely. When suddenly my secret weapon springs to action, almost startling me.

"Are there any alternative or natural treatments that can be used or that might help?" asks Lauretta, my wife.

The Queen is not pleased. "No", she replies as her mouth tightens and the corners curl. "Some of the non-regulated by a government agency herbs actually cause harm to the liver. If they were helpful I would have heard of them and pharmaceutical companies would have picked them up and be selling them".

Lauretta had asked THE QUESTION that I needed to have asked.  Suddenly I realized that the Queen, while she is nice and kind, and pleasant, is in essence a pharmaceutical rep/ salesperson.  She knows Peg and Copeg and everything else is outside of her realm. While this may be satisfactory for many, it is not for me.  Even though I expect that I will do the Peg/Copeg tx I want to feel like my doctor has something more to offer as well. 

I guess my main feeling is that whatever route I choose to pursue, it is probably going to be hard at least at some point and when I reach that point I want to feel like I can have absolute confidence in my careprovider. I know that they cannot guarantee outcomes, and I am OK with that….but they do need to guarantee that they will respect me and try to work as a collaborator in my treatment. I view it as I am building a "treatment team" and while the doctor may have a critical role, so do my wife and I.

I left the doctor's office feeling discouraged and confused, (still only partially in my body) but fortunately Lauretta helped to get me back in the game  (and in my head)by reminding me that I had some positive steps ahead of me to take. We drove over to the hospital and I had blood drawn so that I could learn my genotype and viral load, and I scheduled an ultrasound of my liver. These two things are actually big progress.

Over the weekend I have done some research and I have found another doctor's office who specializes in Hep C! On Monday morning I will give them a call and try to schedule an appointment. Hopefully by the time the lab results come back I can get an appointment with them. I don't need a Queen...or a King.....or even a Princess or Prince.....I need a collaborator.