A Dollar Out of Fifteen Cents

*This is the sequel to My Liver Hates Me that I wrote recently about the recent diagnosis of NASH, or early Cirrhosis.  See Nov. 14th’s post for that story. 

I’ll be blunt– I’m scared.  I’m not ready to die. Not yet.  I’ve been working too hard to get to the point where I’m at in life to just give up.  I have overcome so many obstacles.  I’ve been told my story tends to motivate people by being self made due to resiliency, or grit, as I’ve overachieved and surpassed any expectation people have had for me.   My current health condition of NASH, or early Cirrhosis, gives me about 10-15 years to live, with things deteriorating as this progresses, so pretty much 5 quality years left before I start to wither away.  Without a story book ending or a transplant, there is a strong chance that I don’t even make it to retirement age.   Why the hell am I even saving so much into my Roth and 401?!  Every day this affliction will in theory get a little worse with the symptoms and inflammation, until I’m yellowed and swollen and vomiting up bile.  Marcus Aurelius implies in his classic book on Stoicism called Meditations that once you hit age 40 you pretty much have lived life.  Well, I’m in my mid-40s, so I am in mid-life. I’m too old now to have a story of ‘dying young’, but I am a victim of my youth.  We are all familiar with the ‘27 Club’ of musicians dying.  One of which, Layne Staley from Alice In Chains, had terminal liver damage from severe drug addiction and spent the last year of his life in recluse in his apartment. On the rare occasion where he would make an unintentional public appearance at a grocery store or on the street it was noted how jaundiced and near death he looked.  That is my potential outcome.  

Or I can choose to try and beat this affliction.  There is a chance I can reverse this back to where I’m just living with a damaged liver, but minimal impact on my life expectancy.  That possibility is in my control.   That is what I’ve decided to do. I’ve decided to live. I am determined to live.  I worked my ass off to escape the shitstorm of my youth, depression from PTSD, and severe childhood trauma that caused me to not give a fuck about my health. I expected to die young when I was in my younger days, but don’t actually want to.  Not now.  I have so much I still want to do. I don’t know what those goals are, but I know I want to be there when those come to realization and completion.I was told that based on similar circumstances, there was probably a 70% likelihood that I didn’t make it to age 20 with the life choices I was making, whether that was by own doing as a result of the PTSD and depression, by the drugs and alcohol I consumed regularly, or by the reckless decisions I was making. I beat those odds and am still here, and plan on beating these odds, as well. I accomplish things and beat odds. That is what I do.

8 fucking years of continued medical bullshit.  My weight ballooned up 50 pounds to where I was at an all time high of 274 pounds July 4th week for our anniversary trip not even 5 months ago.  I’m glad I cut no corners and ate like King Henry VIII, drank the best wine I could, and ate 2 dozen pot brownies while on that trip, since that turned out to be my last hurrah. Literally had an anniversary steak surf and turf dinner and expensive wine and 2 desserts, plus gelato daily. I appreciate that resort experience now more than ever. The weight and bloat that happened, however– my God. 25 years ago I wrestled in some college tournaments at 170 pounds, so literally 100+ pounds lighter. How the mighty have fallen.  8 years of orthopedic setback after orthopedic setback leading up to this current point. The pain, depression, and weight gain have been relentless.  During these last several years I cut back significantly on my wine drinking, happy hours, and sports and beer with the boys, which I loved to do, and turned to weed for the medicinal benefits of the pain and relaxation. To give my lungs a break I evolved to cannabutter. When not medicated due to my chronic pain diagnosis, I would indulge in way too much CBD edibles– sometimes almost a full bag a day.   The weed and munchies that were heavily present, along with the disabling orthopedic issues that caused inactivity, did not help the waistline.  I became severely obese and am disgusted with that detail in my life. It crushed my health and created a cycle of chaos for my mental health and ego. I have intentionally withdrawn myself from society even though I live in the heart of the entertainment area of a major large city. At times recently, I have gone months without even leaving my apartment grounds except to go to the post office or pick up some meds from CVS. This isolation has furthered my depression.       

When I got the NASH diagnosis 6 weeks ago after my Fibroscan it hit me hard. I was 5 months out and recovering from a major spinal fusion and bone spur situation in my lower back that was debilitating, and kept me hammered on strong pain meds, nerve blocks, and muscle relaxers for a long time. I also just had Covid the prior month, which really fucks up your liver.  I have had a history of abnormal liver test results, which I didn’t prioritize at all assuming I had time on my side. For these reasons, I didn’t expect good news from the testing, but also didn’t expect bad news. I knew I had liver damage brewing for many reasons, including the decades of substance abuse that started in elementary school and became regular by 7th grade; the genetic disposition I have to what seems like every illness that runs on either side of my blood line; the diet I developed that fattened my liver like a duck gets fattened for Foie Gras; the 20+ years of pain killers and other meds I have been on for numerous orthopedic injuries, surgeries, and setbacks as a result of my obsessive sports career; or the ridiculous amounts of supplements I took that were supposed to make me superhuman.  However, I was not ready to actually hear the words, “you have early stage cirrhosis.” Took my breath away hearing that.  That literally changed my life. 

Luckily, I have situated myself over the years to now being in a position to have the resources needed to support me. I live within walking distance to one of the top medical centers in the world with cutting edge technology in use. I have insurance. I have PTO that allows me to go see the doctors as needed. I also have both parents still alive who I’ve built into a support system for me on this with complete transparency.  I talk with both/either daily.  Otherwise, this medical situation is a ‘need to know’ basis.  No one at my work knows the actual situation. I’ve simply told my Sales Director at work that my liver is messed up from the recent surgery, and some other health related issues. I’ve already cut out most of my circle of friends due to being toxic for my growth, so that isn’t a concern.  My girlfriend whom I live with has also been supportive and there with me pretty much for every step along this shitty path of shitty health I have had the last 8 years. I know how hard this ordeal has been for me, so I can imagine someone who shares a city apartment with me and has an intimate understanding of my saga feels heavily invested—and also at times heavily burned out from my shitshow.  

Mentally, I knew I had to change my mindset immediately. I know I needed to grieve, but I also had to come to terms with the new diagnosis, and plan an attack. I have 2 Masters degrees, so I know how to research and also run projects. This has prepared me for developing my approach.  I read up on Stoicism. A lot. I read and reread Meditations a few times. Marcus Aurelius starts a chapter by literally saying, “you are going to die… we all die.”  Like everyone before me, and everyone who will come after me, this is a fact of life. The greatest of the greats are dead and had their own demise to deal with. I am not special in that regard— I am simply part of nature and its circle of life. My cirrhosis diagnosis is not unique to me. Liver disease is quickly becoming one of the biggest health threats in pretty much the entire world due to diabetes and the huge market for supplements that are non-FDA approved that have dire long term consequences.  At my Stage 3 NASH diagnosis there is a medically proven possibility I can reverse this to where I’m no longer knocking on death’s door.  The only thing I can control is my lifestyle and diet.  I discovered I’d need to lose at least 10% of my body weight to start to give my Liver and health a fighting chance. Although the obsessive research has been beneficial, it has also given me inconsistent feedback, and severe anxiety to the point where I struggle to sleep after going down those WebMD rabbit-holes at midnight regularly.  

When I did the Fibroscan I was approximately 256 pounds, that means I’d need to lose a minimum of 26 pounds to start to help— 230 pounds became my goal weight based on that 10% logic.  Every pound after that would increase my odds, so I’m targeting under 200 pounds as my goal, which is around the weight when I was a personal trainer many moons ago.  However, I cannot lose the weight too quickly as this will actually add to the inflammation for whatever reason I’ve yet to understand. I also can no longer have any drop of any type of alcohol– wine, many salad dressings, flavorings, etc..— all are no longer an option. Nor is weed or CBD allowable since those process in the Liver. This has forced sobriety on me, which probably isn’t a bad thing, although I’m jonesing for a glass of Caymus right now and a fat rip off my bong. I immediately researched what I was consuming daily in both food and supplements and medication to see what was adding to the injury. I gave to the neighbors or threw out everything that was toxic to me. I ended up giving away about $1,000 worth of food and CBD gummies. I went to Whole Foods and replaced all that garbage with stuff I can eat.  Everything in my kitchen is now edible for me, which gives me confidence and options.  Also, I’m no longer ordering $100+ dinner and lunch deliveries several times a week. Even though Whole Foods is a bit more expensive, I’m now saving at least $250 a week in food delivery expenses—crazy how that works.  I also tossed almost every supplement I had, as all these are processed via the Liver and fuck it up worse. All gone— the weed, CBD, Mushroom coffee, my MultiVitamin, my allergy meds, my pain meds, my anxiety meds, etc. I have gone totally cold turkey overnight, which is scary because of how screwy my mental health and orthopedic situations are.  I have nothing available that is foreign to my body to help my other issues, so I’ve focused on learning meditations, breathing techniques, and started praying again to give me some hope. These have helped me navigate through these first 6 weeks. I had a setback about 2 weeks in and came down with a terrible head cold that evolved into a respiratory infection that lingered for a couple weeks. I couldn’t take any meds to help with the cold symptoms or infection, so I had to rely on 4-5 steam showers a day, and 2-3 servings of hot lemon water and honey tea per day, which did help better than I thought they would. The downside of the honey was how much added sugar and carbs that threw into my daily nutritional macros. 

Conveniently, within the last few months I have finally been physically able to work out and do cardio again for the first time in 8 years, so I’m already highly motivated in getting back in shape, even without the fucked up Liver being a motivating factor.  I was an athlete and personal trainer when I was younger, so I still consider myself athletic, but fluffy. I’m obsessive about things due to my mental health, so I’m wired to not miss a workout and take no days off. Since I work from home and have a great walkable neighborhood and community pool no one uses during the work day, I do a 5k walk or 30 minute pool workout every day at lunch. This is when I listen to audio books. I also got back into doing push-ups and dumbbell curls with 3-4 sets a day of each. 

I feel the increased daily activity alone would help with some of the body shaping and weight loss, but I also know that diet is going to be the biggest thing I can do.  I used my insurance to schedule with a Dietician referred by the Liver doctor.  The Dietician helped me understand my daily nutritional macro goals, and also measured my body fat and related data.  Turns out I am in terrible shape. That motivates me further, as I was an athlete and also a personal trainer in what seems like a lifetime ago now.  I was told I can lose initially 10-12 pounds a month (about 3 pounds a week) and still be OK, since I had plenty of fat to lose, and bloated water weight.  This would eventually need to slow down to 8 pounds a month (2 pounds a week).  I love to cook, so I researched the hell out of what I can and cannot eat and have created numerous recipes. I also was told that intermittent fasting of 12-14 hours a day would be optimal. I decided to initially do 16 hours of fasting the first 2 weeks, but that was making me too weak, lightheaded, and I wasn’t getting enough calories. 

Heavily influenced by the munchies before my diagnosis, I was consuming approximately 3,200 calories a day on average. Often, like on my July 4th resort trip, considerably more. The first 2 weeks of my new diet and fasting I struggled getting to 1,200 calories a day in that short window of eating because I was uncertain on what I could eat. I was at a 2,000 calorie a day differential, and literally lost 7 pounds the first week and 7 again the next week. This was unhealthy obviously, but tied to the flushing of toxins out of my body, fasting, and unintended starvation.  I’ve since targeted 1,800-1,900 calories a day, since that is my daily amount needed to maintain my weight, then you throw in the cardio and workouts I’m doing and this becomes a 500-700 a day calorie differential.  Now that I’m 6 weeks in, I’m averaging about 3 pounds a week, or 12 pounds a month.

Stress and sleep are the 2 areas I’m currently struggling with the most with. Those damn WebMD rabbit holes I tend to do at night before bed are my enemy. My high stress sales job, my shitty health, the fact I work from home so can never truly unplug from work, the large amount of medical debt I’ve acquired because of 8 years of medical chaos, and fights with the live-in girlfriend mainly because we’re literally never more than 30 feet away from each other when home for the last 8 years, have all contributed to scary levels of stress. Plus, I have mental health issues from all the cruddy experiences I have endured since I was a small child, so most things become magnified for me. Thank God I have a good therapist I see weekly, a couple’s therapist we see twice a month, journal daily, and use writing as an outlet to help unpack all this chaos. I don’t think I’d be able to navigate this without those interventions.  

I just had this past week my 6 weeks progress check with my Dietician. I’m down 20 pounds, and 25 pounds since my Fibroscan, so I’ve attained 10% weight loss already, which is the unofficial target to start to help the Liver inflammation. Of those 20 pounds, all of it is fat, primarily visceral fat.  My visceral fat, which is the fat surrounding your organs, is down 26% and I’ve actually gained more lean muscle. I’m transforming into my younger athletic self. My body fat has gone down 6%, so 1% a week.  My waistline is down 3” and I’m fitting in jeans I haven’t been able to wear since 2016. 

These 6 weeks aren’t without some areas of caution, though. I’m reminded every time I look in the mirror of my Liver damage by this triangle shaped bulge where my liver is. 6 weeks ago this bulge measured 4.5” by 3”.  It has shrunk each week to where it is now about 2.5” x 1.5”, so that seems to correlate with the weight loss. Even though it is getting smaller, it is still causing my significant anxiety— I can literally see a lump where my liver is.  There are also Liver-damage related symptoms like itchiness, cramping in my feet and legs, a dull pain that shows up 1-2 times a day for a short duration in my Liver area, and a more frequent and longer lasting cramping pain in my rear rib cage by the Liver. These symptoms remind me of how serious my health situation is, but they have appeared to have decreased in frequency over these last 6 weeks with the weight loss. 

As a result of these symptoms and for my own peace of mind, I asked the Liver doctor to get some imaging done in my abdomen. My mind has gone to worst case scenario, and to thinking I have been developing cancer in either my Liver or Gallbladder, so an Ultra Sound and bloodwork were ordered and I just got the results back. The Ultra Sound ruled out everything but NASH, so that is still present. I don’t have prior data from 6 weeks back or earlier when I was at my worst, but my Liver is currently enlarged by 13%, which can be the cause of that bulge.  The blood work was amazing, which is absolutely tied to my obsessive dieting and removing all the toxins from my body.  My ALT score, which reflects active Liver inflammation, dropped 44% in 6 weeks and is now normal.  I was also PreDiabetic before, but am now no longer in that category at all.  I couldn’t have asked for a better progress report than that blood work, which was a best case scenario. I thought I’d be down a bit in the ALT score, but not 44%.  Same for the A1C score and Glucose. This totally reinforces the diet and lifestyle change. I feel I am giving myself a chance.

Although my blood tests are fantastic, my weight and body fat have already dropped over 10%, and I am physically feeling better, I know I am nowhere near being out of deep end on this journey. I still have pain, a bulging Liver, and other symptoms. NASH doesn’t simply just go away.  It took a lifetime to get to this point of illness, and 6 weeks of results are simply a trend, but I want to make this progress the new normal.  I need to lose another 10% of my weight, which puts my weight around 200 pounds. That would be 20% weight loss, significantly less body fat, and an overall improvement in other areas of my health, hopefully also aiding my fatty Liver. I have a plan and am motivated.  My life depends on it.