Hi everyone,
I'm sorry to be writing this in a "mass email," or even in an email at all, but with everyone's schedules, it would be hard to find times that worked for everyone, and we wanted everyone to know what is going on.
Some of you know that Chris had a liver biopsy on October 5. For some of you, this is brand new news, and for that I apologize--again, it's hard to find times to call everyone, and quite honestly, I didn't know what to say, especially for those of you with whom I don't speak regularly. Our hopes were that everything would be just fine and we wouldn't need to be worrying anyone about us.
On Monday night (October 15), we found out the biopsy results. Chris has a condition called nonalcoholic steatohepatitis, stage 3-4 (NASH). You can read more about it here, from the National Digestive Diseases Information Clearinghouse.
Again, some of you know everything, some of you only knew that "something" was going on, and some of you didn't know anything. I want everyone to be on the same page, so bear with me if anything is repeated. For those of you who have seen my posts on Facebook or Twitter, or have emailed me about other things, if you're wondering why I haven't said anything until now, I just needed time to process everything and figure out what to say.
Backing up a bit, Chris was scheduled for his regular physical in August. He'd had blood drawn a few weeks before the appointment for the usual tests that doctors run for physicals. The PCP noticed that C's liver enzymes (ALT and AST) were slightly elevated, but didn't think it was anything to really worry about. He told C to go back to the lab in a few weeks for another set of tests; when C did that, they were a little bit higher. More waiting, more testing, including an ultrasound which showed a fatty liver, but no tumors, no cysts, etc. During this time, C was very worried and anxious, but he dramatically changed his diet and began exercising more, hoping that this would bring his levels down. The additional blood tests showed that the levels were STILL climbing, and C's PCP referred us to a gastroenterologist, who ran even MORE tests. We knew it wasn't cancer or the really bad forms of hepatitis, which has always been a concern for C, because of the population he works with. The gastro also reviewed all of C's records from when he was in the hospital from the accident, just to be sure that his liver wasn't damaged and "forgotten." All of the gastro's tests came back negative, which was good, but we still didn't have a clear answer. He recommended waiting a few months, then retesting the enzymes; at that time, if they were still high, he'd send C for a biopsy. C asked if the biopsy could be done now, for peace of mind and a definitive answer. He had a feeling it was NASH and the gastro was feeling similarly--the only way NASH can be diagnosed for certain is with a biopsy.
It was a good thing that C asked for the biopsy now, although we didn't think it would be this severe. Even the gastro was shocked. Stage 3-4 means there is significant fibrosis (scarring) on the liver. The important thing is: NASH CAN BE STOPPED. It might even get a little better, since the liver CAN heal itself if the damage isn't too advanced. C still has NORMAL liver function. The treatments are good ol' diet and exercise, which means C is in control of his destiny. This is good (no drugs that might make him feel sick or have weird side effects) and bad. C is VERY scared, naturally, about having this, but is even MORE scared that all the hard work might not pay off. He also feels that he is continuously being dealt a bad hand--the accident, two layoffs, now this, so it's going to be hard to get him to a place where he's feeling optimistic. He's got a lot of things on his side: he's young, he doesn't have any other chronic conditions (such as, diabetes, heart disease, high blood pressure, high cholesterol), we can afford to hire a personal trainer and the best food out there, we have health insurance and access to some of the best doctors in the world because of where we live, and most importantly, he has a support system. My parents, C's dad, and I are all working on helping him to take one day at a time and get to a more positive place about his diagnosis. And of course, we would appreciate any and all support, encouragement, prayers, and good wishes from you too!
Thanks for reading. Below are answers to some questions you might have, but if you have others, please let me know.
Much love,
Jen (and Chris too)
Questions!
How did this happen? NASH is a lifestyle disease. Being overweight and having abdominal fat are two risk factors, and those apply to C. The irony is that not everyone who is overweight will develop this (I'm heavier than C, and my liver is perfect) and not everyone who has it is overweight. There are other risk factors as well. Sadly, doctors are seeing more cases of this, due to the American lifestyle.
Did C feel sick? NO! That's typical with NASH, though. It's silent, just like heart disease. The person can feel fine for a long time.
Is this related to his accident? We don't think so, although being in bed for months recuperating probably didn't help, nor did the medications that were used to keep him alive and out of pain. There have been some studies showing that the liver can be damaged by the TPN that was used to "feed" him while he was in the coma, but the studies were done on people who were on TPN for months or years, not weeks as in C's case. No one knows for sure where this began.
Didn't C's mom die of liver cancer? Yes, she did. Because she didn't go to the doctor until it was literally too late, no one is sure how her cancer began. We do know that NASH, when untreated, can turn into cancer. We would not be surprised if this is how hers began. To use those cliches, prevention and awareness are really key. GO TO THE DOCTOR.
NASH has "hepatitis" in it. Isn't that really really bad? ANY inflammation of the liver is called hepatitis. "Hepat" refers to the liver and "itis" means inflammation. Bronchitis is inflammation of the bronchial passages, otitis media is an ear infection, etc. NASH is inflammation caused by the fat deposits. It's not communicable; he didn't get it at work or any place else, I can't get it from him, etc.
What happens next? We wait. C works on himself. In 3 months, he'll go back to the gastro for labs and an exam. That's about it. Eventually he will have to have another biopsy to measure how things are going on the inside.
How are you doing, Jen? I'm OK. I'm worried, obviously, but I am a little more optimistic than C is right now about this. Keeping my mind off of it helps--hooray for being super busy at work. I've been working out with a personal trainer for two months now, and have change my eating even more (lost ~10 lbs and 12 inches overall), so I know that C can do it too. In the back of my mind, I also wonder "what if lifestyle changes don't work for him?" but anything is possible. C's severe anxiety about all of this has taken its toll on me, but we've found someone for him to talk to, and she specializes in helping people through health issues. I'm excited about him taking more control of his life and feeling better (overall) in the next few months. I know that once he starts seeing progress (even if it's just being able to run further or lift more), his positivity should grow.
I'm sorry to be writing this in a "mass email," or even in an email at all, but with everyone's schedules, it would be hard to find times that worked for everyone, and we wanted everyone to know what is going on.
Some of you know that Chris had a liver biopsy on October 5. For some of you, this is brand new news, and for that I apologize--again, it's hard to find times to call everyone, and quite honestly, I didn't know what to say, especially for those of you with whom I don't speak regularly. Our hopes were that everything would be just fine and we wouldn't need to be worrying anyone about us.
On Monday night (October 15), we found out the biopsy results. Chris has a condition called nonalcoholic steatohepatitis, stage 3-4 (NASH). You can read more about it here, from the National Digestive Diseases Information Clearinghouse.
Again, some of you know everything, some of you only knew that "something" was going on, and some of you didn't know anything. I want everyone to be on the same page, so bear with me if anything is repeated. For those of you who have seen my posts on Facebook or Twitter, or have emailed me about other things, if you're wondering why I haven't said anything until now, I just needed time to process everything and figure out what to say.
Backing up a bit, Chris was scheduled for his regular physical in August. He'd had blood drawn a few weeks before the appointment for the usual tests that doctors run for physicals. The PCP noticed that C's liver enzymes (ALT and AST) were slightly elevated, but didn't think it was anything to really worry about. He told C to go back to the lab in a few weeks for another set of tests; when C did that, they were a little bit higher. More waiting, more testing, including an ultrasound which showed a fatty liver, but no tumors, no cysts, etc. During this time, C was very worried and anxious, but he dramatically changed his diet and began exercising more, hoping that this would bring his levels down. The additional blood tests showed that the levels were STILL climbing, and C's PCP referred us to a gastroenterologist, who ran even MORE tests. We knew it wasn't cancer or the really bad forms of hepatitis, which has always been a concern for C, because of the population he works with. The gastro also reviewed all of C's records from when he was in the hospital from the accident, just to be sure that his liver wasn't damaged and "forgotten." All of the gastro's tests came back negative, which was good, but we still didn't have a clear answer. He recommended waiting a few months, then retesting the enzymes; at that time, if they were still high, he'd send C for a biopsy. C asked if the biopsy could be done now, for peace of mind and a definitive answer. He had a feeling it was NASH and the gastro was feeling similarly--the only way NASH can be diagnosed for certain is with a biopsy.
It was a good thing that C asked for the biopsy now, although we didn't think it would be this severe. Even the gastro was shocked. Stage 3-4 means there is significant fibrosis (scarring) on the liver. The important thing is: NASH CAN BE STOPPED. It might even get a little better, since the liver CAN heal itself if the damage isn't too advanced. C still has NORMAL liver function. The treatments are good ol' diet and exercise, which means C is in control of his destiny. This is good (no drugs that might make him feel sick or have weird side effects) and bad. C is VERY scared, naturally, about having this, but is even MORE scared that all the hard work might not pay off. He also feels that he is continuously being dealt a bad hand--the accident, two layoffs, now this, so it's going to be hard to get him to a place where he's feeling optimistic. He's got a lot of things on his side: he's young, he doesn't have any other chronic conditions (such as, diabetes, heart disease, high blood pressure, high cholesterol), we can afford to hire a personal trainer and the best food out there, we have health insurance and access to some of the best doctors in the world because of where we live, and most importantly, he has a support system. My parents, C's dad, and I are all working on helping him to take one day at a time and get to a more positive place about his diagnosis. And of course, we would appreciate any and all support, encouragement, prayers, and good wishes from you too!
Thanks for reading. Below are answers to some questions you might have, but if you have others, please let me know.
Much love,
Jen (and Chris too)
Questions!
How did this happen? NASH is a lifestyle disease. Being overweight and having abdominal fat are two risk factors, and those apply to C. The irony is that not everyone who is overweight will develop this (I'm heavier than C, and my liver is perfect) and not everyone who has it is overweight. There are other risk factors as well. Sadly, doctors are seeing more cases of this, due to the American lifestyle.
Did C feel sick? NO! That's typical with NASH, though. It's silent, just like heart disease. The person can feel fine for a long time.
Is this related to his accident? We don't think so, although being in bed for months recuperating probably didn't help, nor did the medications that were used to keep him alive and out of pain. There have been some studies showing that the liver can be damaged by the TPN that was used to "feed" him while he was in the coma, but the studies were done on people who were on TPN for months or years, not weeks as in C's case. No one knows for sure where this began.
Didn't C's mom die of liver cancer? Yes, she did. Because she didn't go to the doctor until it was literally too late, no one is sure how her cancer began. We do know that NASH, when untreated, can turn into cancer. We would not be surprised if this is how hers began. To use those cliches, prevention and awareness are really key. GO TO THE DOCTOR.
NASH has "hepatitis" in it. Isn't that really really bad? ANY inflammation of the liver is called hepatitis. "Hepat" refers to the liver and "itis" means inflammation. Bronchitis is inflammation of the bronchial passages, otitis media is an ear infection, etc. NASH is inflammation caused by the fat deposits. It's not communicable; he didn't get it at work or any place else, I can't get it from him, etc.
What happens next? We wait. C works on himself. In 3 months, he'll go back to the gastro for labs and an exam. That's about it. Eventually he will have to have another biopsy to measure how things are going on the inside.
How are you doing, Jen? I'm OK. I'm worried, obviously, but I am a little more optimistic than C is right now about this. Keeping my mind off of it helps--hooray for being super busy at work. I've been working out with a personal trainer for two months now, and have change my eating even more (lost ~10 lbs and 12 inches overall), so I know that C can do it too. In the back of my mind, I also wonder "what if lifestyle changes don't work for him?" but anything is possible. C's severe anxiety about all of this has taken its toll on me, but we've found someone for him to talk to, and she specializes in helping people through health issues. I'm excited about him taking more control of his life and feeling better (overall) in the next few months. I know that once he starts seeing progress (even if it's just being able to run further or lift more), his positivity should grow.
