I'm not sure where to start other than to say, thank you Donna Jean for finding this site. I don't know how we got along without it.
My dear husband Gene has had cirrhosis for almost three years. It was very severe when first diagnosed and it has been a battle to get him to the stable state he is in currently. If his Docs had their way, he would have died several times over.
Exactly two years ago, Gene was also diagnosed with esophageal cancer which was discovered on an endoscopy looking for varicies. This was devistating news. Gene was okayed for surgery but fell into a coma following his preop physical due to a mild bladder infection. Following this, we were told surgery, radiation or chemotherapy were no longer options. Within a few months, Gene was placed on home hospice care. Somehow, a miracle happened. Gene's hemoglobin returned to normal and his liver function tests improved greatly after fighting, and I mean fighting to get Gene on continuous rotating antibiotics to control the toxins. Lactulose was only minimally effective at best and after a week off antibiotics Gene would develop hepatic encephalopathy quickly. Hospice tried to withold the antibiotics on the basis that it was unethical to prescribe them when there was no infection and the Medical Director said he would let Gene die before he would write a script. But there is justice, the infectious disease doctor and oncologist required the Hospice doctor to write out the prescriptions for rotating antibiotics.
Gene was in Hospice for seven months but was deemed inelligible when the cancer didn't spread and his liver function improved.
That was a little over a year ago. Gene is still doing okay. Sometimes he is better than other times but the antibiotics keep him clear headed and fairly well coordinated.
We try to live day by day knowing the Cancer could spread at any time. Nobody can explain why such an aggressive form of cancer has not killed Gene in two years.
I seem to be the one having the most difficulty coping recently. I've experienced anxiety, depression and overload being the one who has to watch for subtle changes in Gene's status, struggling with the medical system or lack thereof, dealing with Gene's resistance to my help, worrying about tomorrow and working as a speech pathologist with severely developmentally disabled adults.
For almost three years I've felt so alone. Knowing there is a community of support and information will ease my burden and help me replenish my source of emotional energy.
Forgive me for being so long winded. I don't know how to edit my introduction.
I'm looking forward to hearing from others and sharing what I know. I know life will be much more bearable now.
Thanks you all for listening,