I had a medical crisis, I didn't die, I wonder why

[nash2]

Last summer I had a medical emergency. The odds were it would kill me but I survived with few life threatening consequences. The problems I had are commonly fatal for 80 year old men. There is a message in my experience which I hope to share with you in this article. It is a bit longer than most but stay with me. Understanding consequences is critical to survival and as patients we ignore them at our peril.

Much of the last decade for me has been tainted by the fact that I have cirrhosis due to NASH. People who have been with the foundation for some time know the story but for any newcomers a short review.

Like so many, the first time I ever heard of NASH was when the hepatologist said "You have NASH cirrhosis and I'm sorry, we have no treatment". This was after years of trying to get a diagnosis for unsettling things that I was experiencing. This was in 2015. When I then learned that the standard of care for asymptomatic liver disease was to ignore it until it became serious I became so angry at my doctors that I felt I had to do something. I started the Fatty Liver Foundation in 2017 to give me a platform from which I could object to the way patients were treated.

My cirrhosis journey has been different from that which many experience. I was able, through diet and exercise, to go from a stage 4 to a stage 2 based on liver stiffness measures by Fibroscan. Until late spring of last year I felt pretty good but things began to change about May. It was little things, increasing fatigue, more difficulty remembering things, not feeling like my balance was quite right, occasional gastric upsets. The kinds of things we all think of as the normal course of becoming older. I was 80 after all so not unexpected and easily ignored.

Over several months things got worse and in June I started having severe muscle cramps in my back. Like so many the covid lockdown ruined my previous efforts to get exercise and I hadn't really kept myself up. That was an easy thing to blame it on and I had a few sessions with a physical therapist. Didn't help much, then in July I fell. I didn't think I really hurt myself although my back pain was considerably greater. Just strained I said. It will improve with a little time. My back didn't really agree with me and got worse. I finally went to my PCP at the insistence of my wife. He drew some bloods and we talked about exercise for my back.

That same day he called us and said "Go immediately to the ER, they are expecting you. You are having a critical calcium event which is very dangerous".

We got to the ER and sure enough, they immediately hustled me into their critical care room and started a battery of tests. In a short time I was admitted to the hospital and a flurry of people and tests took place of which I am only vaguely able to remember. The crisis was because my calcium was off the charts. Several times high normal. Calcium is a critical electrolyte but high levels are very damaging to hearts and kidneys in particular.

For a couple of days they were drawing blood every few hours. Both of my arms were covered in big ugly black bruises from the elbow to the wrist. My platelets had dropped so low that all of the needle sticks leaked. I didn't understand at the time but they were running troponin tests. They were waiting for my heart attack to begin. Troponin is a chemical that is released when heart muscle starts to die.

I was in quite a serious condition. When men my age have that kind of crisis, if they don't die shortly, they are on a toboggan ride to hell which will bring death in a matter of a few months as systems slowly shut down.

In the middle of all that drama my other tests came in and the diagnosis was that I had a pretty aggressive form of multiple myeloma. The oncologist was so concerned that she came with her nurse to my bedside during her lunch hour to get my consent for treatment and immediately shot me up with a bucket load of cancer drugs. The myeloma had been the cause of my decline and the elevation of my calcium and it was doing its best to kill me.

Among the things I learned from all the testing was that when I had fallen I didn't just strain my back. I had a series of compression fractures. I damaged my thoracic spine quite badly with fractures in T1, T3, T6, T8, and T11. At this point I'm only concerned about T6 and T8 as they had the most damage but as my blood chemistry got back to normal and they wanted me to reduce the pain meds my back became the central focus of most of my waking hours.

When it became clear that I wasn't about to die, it was time to move to rehab. Several weeks of that and I finally got to go home where we got me a hospital bed and I played the part of mostly helpless bag of bones for a number of weeks. But, as most of you know our mantra is get your exercise. Do something. If you can only do one repetition, do one. Then tomorrow do two, but don't let your disease chain you to your couch.

I started PT with a hospital based trainer that only worked with cancer patients and we began my recovery. In the beginning my back was so unhappy that it really limited me. One of the exercises that I valued is the leg press. You push a plate to lift weights using just your legs. The best I could do was 75 pounds. A healthy 6th grader could probably beat that but it was a beginning.

My goal was to be able to run again. Before covid I had regularly jogged on a running path near our home. I'm sure that everyone was pleased that I had a goal but no one was taking bets that I could do that.

We are now a couple of months into my recovery and just this week I jogged for 1/10 of a mile for the first time in nearly a year. It wasn't pretty and I imagine the sight of a grey old guy pretending to be a runner wouldn't inspire confidence but it was that first wobbly step to a better future. My training weight on the leg press is now 300 pounds which works and we don't want to go higher to avoid risking injury to my back. It still limits me somewhat but is steadily improving as the muscles slowly adjust to the new geometry of my spine.

So why would I relate all of this to you. I believe that I have survived this because through much of my life I remained active even though my profession kept me far too long in front of a computer. I played racquetball 3 times a week for thirty years. I walked and jogged from time to time through most of my 60's and 70's. I didn't have the expected heart attack in the hospital because I had maintained a decent cardiac health throughout my life. I didn't entirely lose my physical strength in my advancing years so I had a foundation to build back on after the crash.

My message for you is that it is never to late to start. Any level of exercise that tells your body it is time to do something is a benefit. Treating exercise as something that must be a part of your life will extend your life and make it feel better regardless of the road you ultimately travel. I know it is difficult and pain saps the will so easily but the rewards are real. Believe that and you can progress. Whatever gains you make will serve you in this journey of life that we all take part in.

[Jkf1]

I'm so thankful for you in sharing this. Our Lord Jesus must truly be with you. Glad you are still here!

[Addieann]

what a great testimony!!! I’ve also been diagnosed recently with cirrhosis and high enzymes. Wish I’d caught it earlier. I’m doing everything I can to save what’s left, and maybe I too can improved my scores. I’m 74, and have two 6 year olds. , so I have much to live for!! Everything I read is very negative, so I’m happy to see your encouragement!! Best wishes to you!! I’m eating very healthy too for the last 5 months. Lost 23 pounds, so I’m hoping to heal my liver too. Blessings!!

[NeverBeen2Spain]

IDK how you do it. Every time I try to exercise, it sets me back days. I'm so exhausted after I can barely function.

Is multiple myeloma common with NASH &/or Cirrhosis? This is the 4th or 5th time I'm being tested for it via lab. Do you know if they ever tested your urine protein creatine & if it was high? My proteins aren't right, depending which ones, most are too low , but my protein creatine urine is too high. Collagen/amino acids raises it very very high, weird, I know.

I just had a liverm biopsy, waiting for the results. Do they test for cancer usually? And does MM show up on a liver biopsy?

Thank you for sharing another story, knowing you had MM & made it through, helps. I can only imagine how much that must have hurt with your fall too & how difficult it all must have been. Grateful you have a good support system.

[nash2 Partner in reply to NeverBeen2Spain]

Lots of questions there. Recovery from exercise takes longer if you are older or ill so ease into it and expect the early days to be hard. It is the price we pay for letting ourselves get so weak.

Myeloma is probably independent of NASH though having a disrupted system could make it easier to get I imagine. Don't know of data to answer that.

Kidney damage is a concern with myeloma so it is something they watch. A specific test for myeloma is called M-Spike. If your docs are concerned about it you might ask them to run that one. It specifically measures abnormal proteins from the cancer.

Cancer is usually flagged by ultrasound. Unlikely to show up with a normal biopsy.

MM is a blood cancer so independent of NASH. It can lead to amyloidosis in organs including the liver but MM would normally be identified first.

[Bloomwithgrace in reply to nash2]

Yes, they did do the M-spike test and it was negative. They originally did the kappa and lambda light chain studies which both were elevated, but upon further tests, the myeloma was ruled out. Our hematologist said that when both are elevated it is normally from infection and usually only one or the other are elevated when its bone cancer.

Yes, exercise will be tough for any age but especially when we get older. I would encourage anyone to find even an on line class to do. I was very lucky and found a class on line that is offered 4 times a week for 1.5 hours each class. Mine are yoga, cardio and hand weights. I am 67 years old. Sitting is the new smoking they say. Can really cause problems for us if we dont move even if we just walk for 30 minutes a day.

[Bloomwithgrace]

Wayne, you are such a living testimony of perseverance and faith. I have been on your site since my son was diagnosed with stage 4 cirrhosis. I am so grateful for your recovery and pray you continue to get stronger every day! My son has also had several instances of near death experiences with his health after his diagnosis. He survived life support on a vent in 2021 from Covid pneumonia. He came home even after complete liver failure, and his lungs not responding to coming off the vent. He was recovering well from all of that until this December 2023. Due to his immune system he was diagnosed with candida glabrata in his spinal fluid. An overgrowth of yeast that caused spinal meningitis. His only symptom was severe headaches. Since he has an enlarged spleen, he is prone to anemia most all the time. They assumed that his anemia allowed the overgrowth of the yeast that is a normal fungus that occurs naturally on our bodies. What ensued was he acquired steroid induced insulin dependent diabetes, (diabetes is no longer a factor), a staph infection from an infected central line (port), his kidneys failed from the antifungal medication Amphotercin. The same medication causes reduced blood counts as well for platelets, ect. He then experienced blood clots in his leg and arm and was placed on blood thinners that he received from an injection in his abdomen. And then without any warning, he started hemorrhaging from the abdominal wall. They discontinued the blood thinners. They think that the insulin sticks along with the blood thinner injections in his abdomen that this may have been the culprit. This internal bleeding lasted for days and he was given 12 pints of blood. It was a very scary time, because it took almost 5 days to coagulate on its own. But by Gods grace it did finally stop. He still has the abdominal hematoma, and was told that it may take 6 months to a year for the body to reabsorb the hematoma. As that got better, he had a staph infection from the PICC line and was placed on vancomycin which also damages the kidneys and causes low platelet counts. But he persevered through all of that. Then at the end of the vancomycin, he developed pneumonia. Another round of antibiotics this time daptomycin. After 5 days on the meds, he developed a reaction to the drug with welts and swelling. So back on the vancomycin. Then some lab tests were done to screen for bone cancer. These came back normal, so we were grateful. He has also experienced a collapsed lung, sepsis, hemorrhagic shock, and a collapsed bladder. I don't know how my son has been so strong in spite of his liver disease, the kidney failure and the attack on his immune system, but he has been amazing. He is still in the hospital 3 months later, but now his kidneys are on the mend, and he is doing physical therapy to finally get home. He has to climb three flights of steps to his apartment, but he is maintaining a positive attitude and this is his new goal. I just wanted to share this story because the spinal meningitis was very rare, but they attributed it to his liver disease. Also he has overcome many obstacles, so want others to know just hang in there and fight through the battles even baby steps are small victories. When Derek had the internal bleeding the hospital was only giving him a 30% chance of surviving the hospitalization. And here we are blessed to be here and thriving, though slow, and gaining ground a little bit at a time. I pray for all those on this site to find answers to be healed. I am so grateful for you Wayne and all the others on the site that share their setbacks and victories. I have learned so much from being a member. I hope this information will be helpful for your members. To God be the glory at this moment for his healing, strength and courage that he provides in those times when we most need it most.

[nash2 Partner in reply to Bloomwithgrace]

That is certainly a journey. It is amazing how much we can tolerate. My best wishes to you and Derek.

[Bloomwithgrace in reply to nash2]

Thank you so very much! Prayers for you Wayne!

[Ilovejoe]

First, thank you for your update, we all care about you! Secondly, your encouragement and educational guidance has helped many of us and is much appreciated. Better heath for all of us!

[Burrinne]

Thank you for this GREATa d positive article. I am 68 with NASH among other things and so many of the chat board are FULL of bad information and not as many give full upbeat positive feedback when for some of us that is better than any of the over prescribed medications most of us are getting.

You article gets. “Hell yes”. From 8-80 we ALL NEED encouragement and sir you are a blessing to this site. Thank you for sharing…

[Burrinne in reply to Burrinne]

This is regarding the above article from Nas2- The 80 year old gentleman

[TwirlerGirl]

Thank you, Wayne, for this, for being the motivator for so many of us, for your stamina in the long slog to an effective drug, and for educating us and an entire healthcare community about a previously unknown disease called NASH. Thank you for making such a difference in my healthcare journey. And now I’m headed for the treadmill, because every little effort counts. I am also still here. Be well.

[nash2 Partner in reply to TwirlerGirl]

Thanks Twirler, what a nice note. I'm glad you are still here.