Today was both better and worse than expected. I'd say that is about
par for the course. It was better in that my wife really just needed some rest. The hospital poking and prodding any time of day is truly draining. My wife related on a number of occasions where the night nursing staff is out at their station in the middle of the night talking loudly and laughing. I know how hard their job is, but you'd think they'd respect the needs of the patient for some quiet time.
She is so incredibly weak and is still slightly encephalopathic. Every move is a challenge and happens in slow motion. A 30 second trip to the bathroom is now a 10 minute exercise. I helped her with a shower today. She took the indignity of requiring help for bathroom and shower well. She has always been very private regarding the bathroom and bathing - I sometimes believe no one in her family has ever farted, and know from long experience she belongs to that special class of people that can only poop at home.
What this disease has done to her body is appalling. She is so thin. Her arms, where she was handled or where IVs were placed, are splotchy shades of red and purple. Healing just doesn't happen. She is gaunt. She was never large, but now her skin seems paper thin and hangs at the joints or looks wrinkled like crepe paper - that is where her belly, ankles and feet aren't swollen due to water retention. I told her today that any god that allows this to happen to one of "his children", is not a god I want any part of, but she shushed me. I can conceive of no reason why any person should have to go through this. I've never been religious and probably shouldn't even mention the subject, but there it is.
She is 54. We have been married 22 years and have one active and healthy 18-year old daughter (there is a long story involving pediatric liver transplantation there which I may share at some point). Prior to my daughter's birth my wife's doctor had noticed on annual blood tests that her liver enzyme test results (SGOT, SGPT, GGT) were slightly elevated. The ability to detect HCV was very new at the time, and even if detected early there were no treatments. We knew something was not right, but her health was good and stayed quite good for another 15 years or so. Eventually our primary care physician got a clue, made the HCV diagnosis, and referred us to a GI doctor associated with one of the three nearby transplant centers (UCSF, CPMC, Stanford). He followed her for some time before starting treatment with Ribavarin and PEG-Interferon. I guess this was back in 1998 or 1999 when it first became available. Unfortunately, my wife could not tolerate the combined treatment and the Ribavarin was dropped. We continued with the Interferon injections, in multiple courses over about
three years. She suffered through that time like a trooper. The treatment is not pleasant. We would have to periodically stop the injections because her white blood cell count would drop too low. It became clear that she was a 'non-responder', and the Interferon was discontinued.
The source of her infection is unknown. She believes there are two likely sources. As a youth, she was hospitalized and received multiple transfusions (for what reason I do not recall). Prior to our marriage, she had also used cocaine (shared a straw or whatever they used to inhale it), like so many did in the early 1980's. So maybe it is one of those. She dreads needles, so I know that isn't a possibility. She is also, or was also, a smoker. Perhaps a pack a day 20 years ago, and for the last few years a very light smoker. She tried many ways to quit, but could not. Is that a contributing factor to the HPS? Earlier in her life she had been a bit of a drinker, getting a DUI once, spending a night at the county jail, and forced attendance at AA. Thankfully, she turned that around, and has been sober for years. She suffers from chronic back pain and has been on pain treatment of various sources, with increasingly potent medications, for many years. Currently she has a transdermal fentanyl patch which works well. Of course, this slows her bowels, and you know what that leads to.
The GI doc has clinic visits once a month in our area and he became concerned about
her 02 saturation and prodded her to get a pulmonary function test and to come to their center for transplant evaluation. My wife was in complete denial and kept putting it off, "I'll go after our daughter's 18th birthday", etc. As it turned out she didn't get to make the choice. My daughter came home from school one day to find her Mom extremely confused. Something pushed her over the edge, a cold or dehydration, or constipation and her ammonia level spiked. Seeing your Mom (or wife) like this for the first time is scary (although as I think back I recall a precedent years ago). After talking to one of the GI doc's nurses they instructed me to call 911, and our first experience with HCV/ESLD in the ER started. That was December 10th, 2008. I'll try to relate the results of that hospitalization and the resulting transplant evaluation tomorrow, and answer some of the other questions that were asked.
Thank you for your comments, I appreciate them all. I read many of the posts in this forum about
a month ago when looking for detailed, first person, experiences with ESLD. After this most recent hospitalization, I wanted to get more info, and had to dig through my browser's history to find the website again. It was worth the effort. Thank you all for being part of this forum.