John Worley John Worley

First post: Oct 6, 2013 Latest post: Oct 19, 2018
As most of you know John found out he had Hepatitis C several years ago but all of his tests were fine so we kind of forgot about it. Oh, we read all about it and what it could cause but other than his diabetes he was great. Well about 2 years ago I had class and he went to the NP we were seeing at the clinic to get his normal 3-month test results and came back and told me that his blood work showed he had bone or liver cancer. Needless to say we were terrified, he told his brothers and sisters and we told our children. It took almost a month to get an appointment with a specialist (gastroenterology) to have him go over the lab results and his files. Dr. K was great and told us that no he did not think it was cancer but he did want to do a lot more test. When we went back we found out he had Hep C 1A (the hardest kind to treat) and his numbers were high. He also ordered a sonogram. We went back to see Dr. K every 4 months for a while where we found out he also had cirrhosis (non-alcoholic) until John started to have massive swelling in his feet and legs and could not work. We had talked about medications for the Hep C but Dr. K. was not comfortable giving them to him due to the danger and John and I had researched them and he does not want to risk the damage they might cause including death. He was put on a diuretic for the swelling and was already on a medication to help control the ammonia levels in his blood due to the liver not filtering (this is also deadly can cause a coma and death). Some of the side effects of his medicines are that he can not be out in the heat and son or gets dizzy and ill. The last thing he had was a CT and they found that his spleen is enlarged so he has to be careful of hitting it (thus the fall down the stairs the other night scared me to death) and that he has a varicies on the spleen (that is a vein that is bulging and could rupture or leak). He is scheduled for an endoscopy to make sure there are no esophageal varicies on October the 30th and a colonoscopy the day before Thanksgiving.  As you can see it has been a while since I added to the journal and I hate to have to start this. Today 9/19/18 the oncologist told us that John definitely has some form of very aggressive cancer we just don't know what kind and what can be done till they get a good tissue sample from a biopsy that will be scheduled right after the PET scan is completed.  He will get 2 iron infusions since his is so low and we go back to see the Dr on October the 8th to go over all the results and see what he thinks needs to be done.