Eight years ago now (wow has it really been that long?) My NASH journey began with a big bang...
I'm now into year two of bandings for portal hypertension and at this point in my life I'm ready to jump in with both feet and do all I can to try and keep anyone, anywhere from going down the same path that I have been on for the last several years ... like I said it started off with a bang (one that crept up like Prius and hit my life like a MAC Truck!)
Eight years ago I was - HEALTHY - and I mean that in the BIG FAT Healthy way the uppercase letters depict. At 323 pounds I had allowed my weight to creep up about 5-10 pounds per year for fifteen years or more and never really given it much thought. Back when I had a decent job I had health insurance and actually got a glucose test and was proudly labeled non-diabetic. Type two diabetes had run in the family and I was not only proud but somewhat boastful that everyone else in the family was a diabetic but not me. Once, that was true.
First came the swelling feet. Support hose says the Dr. Next came a positive test for diabetes, shortly followed by high blood pressure. More meds, no problem says the doc. I did my best to lose as much weight as possible as quickly as possible; I had seen the ravages of diabetes on my mom who had been diabetic for years and had just recently undergone quadruple bypass surgery and was NOT doing well. Exercise was iffy to non existent; several years before I had fallen off our roof in what my wife refers to as my Peter Pan Accident (no I can't really fly) and had just recently weened myself off of years of opiate use that was far more detrimental than helpful. So diet it was... I walked as much as I could but started eating like a human should again and the weight started coming off. At first it was nice; I was seeing progress, I was getting thinner and then the slow bomb exploded!
I started getting sick. At first just a little nausea. That nausea quickly became constant and was often accompanied by vomiting and diarrhea that over time became as constant as the nausea. Went to see the Dr. again. Something is not right I say... Ahhh meds says the doc. Let's mess with those blood pressure meds and see if we can't find a dosage that likes you better. Down 5mg STAT. Oh, still sick? Uh, down 10! No, that's not working your BP is back up - so up 5mg STAT. An unknown number of visits later, my BP was still fluctuating, my diabetes was still present and my health was failing rapidly. By this point I was close to 150 lbs (down from 323 in about 6 months) and was so sick most of the time that eating, sleeping, working or doing anything was practically out of the question. Then came the day I woke up in the hallway with my wife crying and surrounded by paramedics; wondering where I was and what was going on. That's pretty much the last thing I remember until I woke up from the life flight in another state in hospital on kidney dialysis. Guess what? My Dr. called. ME: "I TOLD YOU I WAS SICK!" oh - NOW he heard me.
I was pretty sure I was gonna die several times over the last eight years and I've had even more times when I felt like I wish it would just hurry up and get it over with already and still more times than that once I got to the point that I was sure this was it my body would say - okay; now that I have your attention I think you need to start realizing who's the boss here now and it ISN'T your wishes or desires - it's what your wishes and desires have led to.
This disease is devastating, life changing, and will make you seriously reconsider what you once thought was important or valuable. It will make you feel like crap while not being able to do it and have you feeling fine when you're crapping your life away. It's a pain AND it will also make you smile and cry when someone posts about something as normal to most folks as a normal bowel movement as it hits home just how much your life has changed. You still want and need the friends and family that are no longer there but you really don't want to be 'that guy' that is always complaining and whining or always GOING TO do something but never does. This is NOT something you want to find out first hand... you're just gonna have to trust me on this one: The change WILL change you!
Over the years I've seen more hospitals had more tests and scans and blood work and procedures done that I ever thought possible and they are not likely to lessen in frequency over time. I've felt, good, bad and in-between; but in all honesty bad a lot more than anything else. It's not a nice way to live. Having gastrointestinal issues brought on by the diabetes (which is now gone! thank goodness) has made the diet journey a real challenge. What's good for my gastroparesis is horrible for my liver and visa versa. It gets to be a real challenge when you have to think all the time about what you ate and when and how much activity you have had, how likely is it that what you've eaten in the last several days is okay? or is this gonna be a delayed reaction from what may or may not already be present in my system? It's pretty exhausting actually.
If you end up where I am you're going to be frustrated. Guaranteed. Frustrated with yourself, frustrated with the health care system, frustrated with the lack of information from those who are treating you, frustrated with the lack of information among health care professionals and their often lackadaisical disregard for what you are going through or their comments about your obvious alcoholism. You'll be fed up with being fed up, tired of being tired, sick of being sick wish that SOMEONE would please just give you a straight answer and tell you WTF is going on with your health? I was lucky ... I found the fattyliverfoundation.org and HealthUnlocked not everyone has had this support and information. For me; it changed my life - AFTER my life changed!
Since starting this path that I inadvertently chose for myself I've been lucky to have had a supportive family and one or two good friends to ride out the rapids with, over time I think I have a pretty good health care team; each of them different in their own way - but at least one has been honest and human enough to actually be honest and human and draw the curtain and have THE TALK. Things are not good; even when they're good. Like life, it's a one way street, but not with the stops you want or the points of interest you thought you might be enjoying OR the good health to enjoy them if they were even available options.
I can't change what can't be changed but I can do something - maybe not for me but hopefully for someone else. If my words, my life, my time or my energy can be spent stopping anyone else from making the same poor health choices or having the same errant attitude that death is a matter of if not when - that this, this effort is worth my effort, my time and my energy and whatever time I have left. PLEASE - even though I'm really nobody, for your sake and the sake of those who love you - WAKE UP! The future is in your hands! Life is gonna end but it's far too beautiful and precious to waste. NOW is the time to do something while you can instead of being forced to react to something you can do precious little about. Come Rise Up, Come Give Love, What Are You Waiting for? It's a Brand New Day. If you see a friend or family member heading up this creek, hold the sh!t end of the paddle up and with a good heart and kindness explain exactly where this journey will take them and that they DON'T want to be here!
(I know I talk too much and say too little and that this is bound to be filled with errors and inconsistencies - but it's MY story... don't let it become yours)