I went back to the hospital yesterday for the 2 week checkup after treatment stops. More bloodwork, another ECG and a physical exam from a doctor. I managed to glean from what he said to the nurse that I have an enlarged liver with steatohepatitis (non alcoholic)
(Nonalcoholic steatohepatitis or NASH is a common, often “silent” liver disease. It resembles alcoholic liver disease, but occurs in people who drink little or no alcohol. The major feature in NASH is fat in the liver, along with inflammation and damage. Most people with NASH feel well and are not aware that they have a liver problem. Nevertheless, NASH can be severe and can lead to cirrhosis, in which the liver is permanently damaged and scarred and no longer able to work properly.
NASH affects 2 to 5 percent of Americans. An additional 10 to 20 percent of Americans have fat in their liver, but no inflammation or liver damage, a condition called “fatty liver.” Although having fat in the liver is not normal, by itself it probably causes little harm or permanent damage. If fat is suspected based on blood test results or scans of the liver, this problem is called nonalcoholic fatty liver disease (NAFLD). If a liver biopsy is performed in this case, it will show that some people have NASH while others have simple fatty liver.)
And palmar erythema (Palmar erythema is reddening of the palms at the thenar and hypothenar eminences. It is associated with various physiological as well as pathological changes, the principal one of which is portal hypertension. It is also seen in patients with liver dysfunction. - Wikipedia) non of which I was aware of.
The nausea still comes and goes and with it my appetite. I'm still very fatigued and it is frustrating! I just want to feel like I did before all this drug trial started. I go back in six months for more follow up. As the nurse walked me out she said it was probably just as well that I quit when I did as it was most likely they would have pulled me from the study anyway because of the blurred vision. She said it is something they watch very closely. So I guess either way I would have been done.
I am going to take one more week off work and then head back. I sure hope the energy level increases! After visiting the hospital on Friday I went to Richmond and visited with my Mom as I really don't get into town all that often. I took her out to Steveston and we had a bit of a walk along the water and stopped for fish and chips. It was really nice.
Today I am off with my two sons to go and visit my oldest son and granddaughter for dinner. I don't think I've mentioned it but their marriage has come to an end and they are sharing custody of the baby. It is sad and I love them both and am not taking sides at all. I really don't think there are sides to take, it just slowly came to an end for both of them. My only hope is that they will all be happier this way and that the baby will have all the love and care she requires from both parents as I know she will. They both love her dearly and will work with each other to make sure she is secure and happy.
Our weather here has been on the cool and wet side but I really don't mind. The heat kills me right now and saps what little energy I have as well as making the nausea flair. One day at a time and hopefully life will get back to normal quickly.
Last weekend Josh and Lacey and I went to visit friends in the Shuswap and had a very nice relaxing weekend. It felt good to get away for a bit and just relax.
One last note. A week ago I saw my liver specialist and after examining me for the end of treatment he asked what I thought happened. I said "it was all about the nausea and vomiting and not being able to work, houseclean, feed the animals, clean the litter box, grocery shopping and everything else it takes to run a life on a day to day basis when you are alone. I didn't have the luxury of just lying down and being sick" and he just nodded. He said "what now?" I said, "Well, I plan on regrouping" He looked at the nurse and she said "we just don't have anything else right now" He then mentioned a drug that I missed and looked at the nurse. She said "You like that one don't you?" and smiled and he nodded yes he did. Then he looked at me. I said "Hey I'm always up for a drug trial at least to try it and see" He nodded and said "OK" and that was the end of the conversation.