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John’s Story

Site created on October 6, 2013

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.

Newest Update

Journal entry by John Worley — Oct 19, 2018

We are on day 9 of John's hospital stay and it seems like something new every day. They still can't figure out what the biopsy cells show (all we know is so far every pathologist who has looked at them say they are wrong but don't know what they are, we know quite a few what they are NOT) and the cancer Dr. has sent them to a gastro pathologist to see if they have ever seen anything like them and maybe can identify them. Right now we are more worried about his kidneys and how big of a hit they are taking from all the fluid in his stomach (they have drained it twice since we got here). They are trying meds and other things to reduce the fluid in his body and get his kidneys back happy but if those don't work he may be looking at dialysis next week. At this point, I know of wish they would just do it and get him feeling better. So, we are still in the ocean of "we don't know" and paddling as fast as we can. I think this weekend will be meds, rest, and hoping he starts peeing like a racehorse and his kidneys kick it back up. I will try to add another update soon. I will add that we had planned a rewedding (we were married by a judge in Walhalla SC with borrowed rings) for our anniversary next year. We have moved it up to November the 18th and there is an event for it that I will share the link. https://www.facebook.com/events/2181630695418342/

Read More of the journal titled "Sorry I have been behind in updates!"

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