Hi everyone. I am new here, just joined today. But I have checked the site out on and off for the past 6 months or so. I decided to join, as I am just about
at the end.of.my.rope and my children have been encouraging me to "talk to someone" or get some kind of help, and I think this group may be a good start.
My husband has Hep C, end stage cirrhosis of the liver, diabetes and a mitrial valve heart blockage. He used to drink, but walked away from it when he got the esld diagnosis. I just have to say, its been a very hard three years.... I'll try to summarize....
My husband has had Hep C prob for 35 years. Most of this time he had no symptoms and no problems. He also had been taking vicodin for years because of chronic back pain. Three years ago this month he had a very serious motorcycle accident. Ended up in ICU for a couple of days. We found out at that time that he had a low platelet count. The next 18 months he spent recovering from the accident and had two separate surgeries on both wrists to repair the damage. Because of the injuries his pain medication increased and he was taking large doses of antibiotics.
When time came that he could return to work, after only a week back at work he started having foot problems (diabetes related). Over the next six months he ended up having three toes amputated. More pain meds and more antibiotics...
While he was in the hospital, the Drs found a heart murmer that concerned them, so after he healed from the amputations, he saw a heart specialist. The specialist diagnosed a partially clogged mitrial heart valve, which didn't need immediate attention, but will eventually need surgery to be replaced. In anticipation of that, the Dr. recommended that he see a gasterointologist (sp?) to evaluate his Hep C and low platelets so he could be in the best health possible when it came time to replace the valve.
Around this same time, my husband started exhibing signs of sleeping alot. It seemed like he just could not stay awake. When I took him to the gastero... after tests and a CAT scan, he was diagnosed with late stage liver disease and Hepatic Encephalopathy. This was last November.
This last year has been a nightmare. The HE comes and goes in cycles. He doesn't have any of the other symptoms - no ascetis, no varices, no jaundice. But I swear the HE might just kill us both. He also has been exhibiting a lot of dizzyness, weakness and has fallen several times. Some days he has all his wits about him. And other days, not so much. He seems to become obsessed with certain items and that both drives me crazy and, at times, worries me.
For example one of his obsessions was getting ready for the next big earthquake (we live in Calif). He made several trips to our local REI store and bought around $500 worth of survival gear. Now, I know we needed certain items to have a earthquake kit to be prepared, but not to the extent that he went. He seems to think we need buck knives, guns, sacks of rice and coleman stoves to survive the apocolyptic mayhem in the streets that will happen when we have the next big one. Honestly, if the house doesn't fall in and kill us, we live in an area where we will probably only need directions to the local Red Cross Center.
And now he has an obsession with his guns. I have found him asleep on the couch gripping on to his rifle more than once. This worries me. I make him put away all his guns when I am in the house. He thinks I'm ridiculous, but I just think I'm being wise. He does not have good coordination in his hands, get dizzy and off-balance and at times can be forgetful. Who's to say he won't put a loaded magazine into the gun, forget that he did that, stand up and fall over and the gun goes off?
Anyway - sorry to talk your ear off. I just really need people who have been through similar situations to talk to I guess. He's not sick enough or crazy enough to hospitalize or institutionalize, but how do you manage the crazy stuff when the patient thinks YOUR the one thats crazy?
Thanks to everyone who read this through! I really like reading what all of you have to say in the other posts. It helps.
Pam