Any of you innocently live in denial? I think most people's instincts would be to storm the question with a no! I will admit friends that I often live in a reality challenged world, and I don't think it is always a bad thing. Sometimes it is self preservation. I was asked a question yesterday by a new specialist that is joining our "You want to see something weird" team. (That is what I call my team of doctors. They are all amazingly talented, at the top of their fields, yet they still act like middle schoolers dissecting their first frog...totally excited!) She asked how it is that I am able to still get out and exercise with all of my health problems. The simple truth is that it hasn't ever crossed my mind not to try. Something inside me instinctively tries to get back to that girl in her 20's who could do it all...in high heels...backwards! I had to laugh yesterday though when we were discussing the medications and the conditions they were treating. She asked how long I had worked in the medical field! I explained that I do not work there, but have been a guinea pig there for the last three years! hahaha
Ok...so the new specialist is a Cardiologist who spent the last few years as a heart transplant specialist. This is pretty perfect for my disease. Most of the immunosuppressive drugs are actually used as anti-rejection medications for transplants, so she knows the complications of long term use and other options. She stressed the increased risk of cancers from long term use of my medications and has ordered several screenings. I am wearing another halter monitor and she will decide whether there is anything additional that we can be doing.
Many of you know that my liver enzymes came back elevated three weeks ago. This is common with the medication that I am on, but it could also be caused by my immune system working on my liver. We increased my immune suppressants because of a slight progression in symptoms and my enzymes dropped a little. Hard to know if that is a result of the increased meds or my liver's own regenerative ability. We will test again next week before we get excited. If we decide that it is caused by the Imuran, then we will probably return to the Cell-Cept (a much cleaner drug) and add medications to boost its power.
Glad your still posting, you are about the only other person or blog I have seen where somebody has HE. I don't talk about my HE at all only my Lupus as people have atleast heard of Lupus, I tell people I have Lupus and an Autoimmune endocrine encephalopathy, When I say I have Hashimoto's Enceph no one can move there mind of the thyroiditis or so it seems. I have done cellcept in the past, it is a very tolerable drug.
ReplyDeleteI also have HE, and have been amazed to discover how many other people there are with this diagnosis, despite the continuing assertion that this condition is so extraordinarily rare. Don't get me wrong. I know we are a small number compared to most diseases. But still. I am in contact with 40+ other HE patients through a Facebook page for HE patients. That alone should say something!
ReplyDeleteWell anyway, I love your blog. I wanted to tell you that I have been compiling a list with links to every scientific paper and case study published on HE in the last few years. Some links will take you to an abstract of a paper, but many take you to the full text. The internet is amazing.
Over forty scientific papers have been published in the last two years alone. I just wish our physicians had the time and inclination to stay on top of the research that is flooding in from around the world about HE.
So here is a link to the list of cases in case you would like to do some "light reading" -- ha-ha! I have a sense of humor, you see?!
http://henotebook.wordpress.com/case-studies/