Cirrhosis Stage 4- My journey

[Livmar]

My journey started in 2015 when my platelets had dropped to 98K from 200K + the previous years. My Primary care doctor whom I had for a few years just stood by and did absolutely nothing watching my platelets drop by over 100K! I switched primary care doctors in 2015 and my new doctor immediately requested I see a hematologist.

Needless to say, this new hematologist labeled me as a Chronic ITP (Idiopathic thrombocytopenic purpura ) patient without ever running one single test. She would tell me to see her back in 6 months to see if my platelets had changed. This went on for nearly 2 years. I should point out that I had absolutely no symptoms at this time but just low platelets which never really impacted me.

I just stopped seeing hematologists because I felt they were not helping me. Finally right in the middle of the pandemic(Summer 2020), I started getting a slight pain on my left side ribs. I thought it was the bed because we had a mattress that was getting a bit old. I waited until spring 2021 when I had my two Covid vaccines and finally saw my primary care physician. She immediately indicated it could be the spleen. I had an ultrasound of my spleen done and it showed an enlarged spleen(16cm). A normal spleen for males is from 10-12. I saw a new hematologist who ran a few blood tests and once again indicated I had chronic ITP.

At this point, I was really getting ticked off with hematologists and saw a 3rd Hematologist. I was very direct and demanded I get certain tests done. I had started at this point to do my own research. This 3rd hematologist ordered a CT scan of my abdomen which showed Fatty liver, varices and an enlarged spleen.

I should note that my whole life I have been healthy always exercising, never abusing alcohol, trying to eat right. From 2015 on my new Primary care doctor would order all the liver tests(ALP, AST, ALT), a couple liver ultrasounds. The US always indicated "fatty liver" I would be told to eat healthy and exercise over and over which is what I have always done. I have never been obese, perhaps 10-15 pounds overweight.

Finally, my doctor ordered a GGT liver test and it came back abnormal. I was told to see a Gastroenterologist. The findings were as per the CT scan, varices, etc. I was also ordered an ultrasound but with electrography (It measures the density of the liver). I think this is what may also be called a "Fibroscan" ? Anyhow, this is the test that finally showed that I have cirrhosis stage 4. As you can imagine, this came to me like a punch in the gut. So I have cirrhosis, portal hypertension (which is when the liver cannot output all the blood and it creates all these varices). The spleen becomes enlarged as it also has problems with output of blood trapping platelets. I was put on Carvedilol which helps relieve the pressure and hopefully prevents internal bleeding from the varices.

At this stage the only symptoms that I have is the continued slight pain in the spleen and back area to the left of my left shoulder blade area. I saw a Liver specialist who confirmed all the above. She ordered an MRI and several other tests.

There are several things I have learned :

. Some doctors take shortcuts and just parrot what other doctors say. Switch doctors the minute you are not satisfied with someone.

. Standard liver enzyme tests like AST, ALT and ALP are useless without some other tests like GGT.

. Ultrasounds do not paint an accurate picture of liver disease. It's better to just get an Ultrasound with elastography or Fibroscan rather that just wasting valuable time.

At this point since February, I have lost over 12 pounds, my MELD score is 7 and my ELF is 10.52. I am diabetic but due to my continued exercise and starting the Mediterranean diet since February, I no longer take medication(A1C =6.1). I firmly believe that diet, exercise, getting enough sleep and reducing stress can do wonders. These are all things under our control. My hepatologist told me I can remain stable for years if I keep doing what I am doing. I am keeping my fingers crossed at least until we can hopefully get a liver drug on the market in the next 1-3 years. I feel it is coming.

Finally, I will leave you with stanzas from one of my favorite poems "Invictus":

"I am the Master of my fate:"

" I am the captain of my soul"

[Themightyjnj]

I am cheering you on. It's crazy but my story is almost identical to yours .

[Livmar in reply to Themightyjnj]

Themightyjnj, I am sure there are many which is the sad part and its only going to get worse. We need to educate ourselves.

[Justice1872]

Livmar. I totally understand, I have sought out many various doctors of the same specialty because my crisis is not urgent for them, and I keep hunting until i get the right one. March on my friend, while the journey is not easy we can steer our own way with research, initiative and action.

[robynkaren in reply to Justice1872]

Hi I have been told I have a fatty liver and enlarged spleen for many years I always have awful pain under my ribs on left side but no doctors cared My gastrenologist finally did an fiberscan and now told Chirrosis and is severe I enjoyed your post and dolearn alot here thanks good luck

[Livmar in reply to robynkaren]

Hi robynkaren, thanks ! We have to keep fighting for ourselves and help each other through our experiences.

[Livmar in reply to Justice1872]

Justice1872, You hit the nail on the head. We need to advocate for ourselves because no-one else will.

[3331]

Change oil to extra virgin olive oil. You need it at least a couple tablespoons every day. Your whole body needs it.

[Livmar in reply to 3331]

Hi 3331, Indeed you are correct. I totally eliminated butter and use Extra Virgin olive oil in its place for everything. Four tablespoons is the recommendation for me per day. Take care.

[Rcjb]

It seems a lot of us have similar stories. My cirrhosis is not yet staged. Will be soon. My primary care doc ordered cat scans that found nothing! Cat scan with contrast done same day (went to ER in pain) found cirrhosis, portal hypertension, varices and enlarged spleen. I’ve had low platelets, wbc for at least 5 years.After 30 years with high blood pressure, it’s now low.

I wholeheartedly agree with your recommendations. Don’t wait for docs to do job. Demand answers.

[Cat551 in reply to Rcjb]

It sounds like you’re taking the right steps and have a positive attitude! Doctors don’t take fatty liver seriously, we must be persistent until we get answers. I’ve had mild NAFL for over 15 years. My platelets have been dropping for the last year, from 217 down to 103. I lost 10 lbs even though I’m thin and my last US was normal and my Fibroscan was good. All they’re doing is watching my platelets go down, down. I’ve gotten a new hematologist and we’ll see. Good luck!

[Livmar in reply to Cat551]

Hi Cat551, please keep an eye on your platelets and everything else. My platelets were at 98,000 in 2015 and now they generally hover around 47-52. I do have severe portal hypertension. You want to make sure you do NOT get worse. Get an ultrasound with elastography, MRE or Fibroscan, get your ELF, MELD scores and make sure you stay on top of this. For my particular situation, based on all my experience with hematologists, I would prefer to see a liver specialist(Hepatologist) and gastroenterologist.

[Cat551 in reply to Livmar]

I had an ultrasound a few months ago and liver had no signs of NAFL, and didn’t early this year when I had an US of my liver and spleen. Both were normal size. I had a good Fibroscan (CAP 216, kPa 3.3), in Nov. Although, I know things can turn around quickly though. My platelet count may be possibly related to a blood disorder. My mean platelet volume (MPV), is also high, platelet turnover or destruction. I have a hepatologist but he seems unconcerned. The doctors have a wait and see attitude. It’s frustrating.

[Livmar in reply to Cat551]

Find new doctors until you are satisfied. I have excellent doctors now. Take care

[Livmar in reply to Rcjb]

Hi Rcjb, Isn't it amazing. If I knew then what I know now, I would have sought the proper doctors and jumped way in front of this beast of a disease. Anyone with low platelets that has had this condition for years should have immediately triggered a liver issue with doctors. Doctors are just like any other profession, you have your good one's and your bad ones. For too many of them, its not their fault. They simply have not had the education and or training needed to send someone to the correct specialist. How sad.

[WinterWillow]

Thank you for sharing. I too, have a very similar story/experience as yours. I was diagnosed 2 years ago with stage 4 cirrhosis which very much felt like a sucker punch. I did find out 10 years ago that I had NASH but only told to "lose weight." No information was provided about the seriousness of progression. In the past 2 years, since diagnosis; I have researched and learned everything on my own, and through groups like this. I did find out through my journey that I also have Alpha-1, a genetic disorder that can increase lung and liver disease. I have 2 "bad" genes and both lung (since birth-asthma) and liver. No one ever considered this as a factor when I was diagnosed through a liver biopsy 10 years ago and diagnosed with NASH. It is sad how uninformed and uneducated doctors are on most things related to the liver. As much as I hate that others are on this journey, it is comforting to know that none of us are on it alone. We are warriors. All of us. Keep doing what you are doing as you are doing everything you can. Blessings!

[Livmar in reply to WinterWillow]

Hi WinterWillow, Many blessings to you as well. Good on you for doing your own research. Best of luck on your genetic disorder. It is incredible the amount of information from sites like this and others that we learn from. Thank God for Wayne creating this wonderful community where we can learn from each other. I am truly blessed!

[fattyliver2022 in reply to WinterWillow]

I was recently diagnosed with the MZ heterozygote gene of A1AD, all because my ALT and AST levels have been high. It appears that there are a lot of people, unknowingly, who have A1AD. I now have fibrosis stage 3. I hope with weight loss and eating healthy, I can stave off cirrhosis. I have been leaning on God through all of this. Its really tough to have to deal with this. Prayers to you.

[Sawsee24 in reply to fattyliver2022]

My daughter & I have both been diagnosed with the MZ gene. My father died from Heptocellular Cancer and 2 brothers from Cirrhosis. Thank god my daughter discovered the gene during a dna test. My other daughter is awaiting her results. Unfortunately, my Dad and brothers were cremated so I’ll never know. I’m sure he had full blown Alpha-1. I have a fatty liver and was told to lose weight and exercise (no biggie, according to Dr.) Last Ultrasound (for unrelated problem) showed fatty liver with some scarring. Just turning 65 & getting Medicare. Going to aggressively follow up. My daughter has a Fibroscan next week. Luckily, I live close to Johns Hopkins and can seek care there! I’ll keep you updated. Definitely have to be your own advocate! Dr’s push it off as no big deal 😡