Cirrhosis Support Group
Cirrhosis is a consequence of chronic liver disease, most commonly caused by alcoholism and hepatitis C. Ascites is the most common complication of cirrhosis and is associated with a poor quality of life, increased risk of infections, and a poor long term outcome. Liver damage from cirrhosis cannot be reversed, but treatment can stop or delay further progression and...
I was diagnosed with NASH in Jan of 2019. This came about due to low platelet readings in my bloodwork. Since then I've tried to find out how, why? what is my life expectancy, Dr's aren't much help. I'm in constant pain, I can't take pain meds due to issues developed with a chronic pain condition CRPS Type 2 plus I don't want that crap in my liver! It's more then not what killed it! I have acites, I'm not sure how much, I have them sitting on my pancrease, I also have pancreatitis, gastroperesis, with barretts. It's getting to the point I can't sit, pain in the lower left quandrant, breathing, urine retention, but the urge to go is always there. I hate going to our local ED, they always look at you as a druggie, or you wait sometimes 24 hours if you're lucky, the even triage people in the waiting area. I have transfered all my care to Advent Health here in Florida, as my local Dr's were to cavalier about my health, we'll wait and see, how you get. I'm sorry I'm new to this I am not waiting to die! I want to fight why wont the Dr's teach me how? I've gone from 225-230 in Jan, I'm down to 149-150, as we speak, do I have a fighting chance, why wont the Dr's be more forth coming with info?
Bobby
No one can answer some of those burning questions, because, the human spirit & will to live defies science. Science & medicine are forever evolving, new treatments & maangement.
Grasp Today!
I used to believe that people with ascites were going down the last path. Proven wrong!
Organ transplant is changing, we're learning whole organ not always necessary, a wedge might do. Artificial organs are being developed. Don't let the dark side get you.
Those numbers- what are they? Weight, labs?
You've got a strong will & spirit.
I hope you fnd a doctor who can help guide you to the very newest & best options.
Find the closest liver transplant centre. Find out who the top cirrhosis doctors are there. Have your MD make a referral to that person. If it takes time to see him or her, it takes time.
Once in your world will change. These docs are dedicated to keeping you alive as long as they can. Hopefully you will never have to get a transplant, but if you do, well you do.
Your other conditions are complications to or perhaps even caused by undiagnosed liver disease. Livers are so resilient and tough that they can be screwed up for decades and you will not know until some fluky thing happens that makes it obvious. That is what happened to me!
Do get sucked into any alternative medicine crap about your liver, the only people who know anything about it are board certified internal medicine specialists and that even better subgroup of them, the true liver specialists.
If I were you I would call the Mayo Clinic in Rochester and ask to find out if they have any liver specialists from their hospital in your area. Those people have seem to have a world-wide mafia of their guys running liver clinics all over the place. Hunt one down, get in to see them. Their teams are the best care givers around for us liver folks.
So first thing, find the right doctor. If all you do from now on is hunt for the right doctor you will be rewarded.
Meanwhile, stay cool man. Your liver hasn't killed you yet and given half a chance and the right care, you will be doing a lot better soon. Do not dispair. You will be amazed at how many people there are that love you and care for you and will help you. Most people just want to be asked for help and will step in to do so.
Whenever I meet with any medical person, I am always as nice as I can be. I smile and joke with them, I do everything they tell me to do no matter what. The result, they like you. People do not want to disappoint people they like. That is the key to getting what you want and need. If you go in with a bad attitude and act like a jerk to those people, you will not get what you need, because they make the choice of whether or not to help you, you can only influence them to so. I even send flowers or chocolates to the front office people at my specialists clinic every once in awhile. Everyone likes a little gift and a sign of appreciation. Plus it will make you feel good too.
God Bless you, have hope, you live in the best place on earth to have a screwed liver, now all you have to do is find the right help.
I'm dealing with the NASH diagnosis better, yes it has been around for a while, and no one knew about it. (I truly don't see how it was missed) AS for the numbers I listed they were for weight loss, and that is still happening, and may be related to something more dark than liver disease. I'm being tested for everything under the sun right now.
As for meeting with my Dr's. I'm a born comedian, well at least I think so, but I do like laughter. I am very personable in all meetings with my Dr's. I will tell you this though. I have learned after having CRPS for 20 years, and the medical community, not knowing or believing in the disease has made my trust of Dr's a bit harder than most. I give the utmost respect, until I'm proven different.
Again I thank you both for your replies. I'm on the road so to speak, and I do believe that I am in the best possible place I can be for my area. People come from all over the world according to their history (Advent Health Orlando) so I'm putting my faith in them. I feel super confident, in the transplant team, and facilities, the care team that has been arranged, and I must stress the fact they are treating the whole me, spiritual, physical, social. I've never experienced any type of care like this.
First and foremost, I highly disagree with Tony's statement regarding ' NASH is a bs diagnosis in the sense of it being a catch-all. You have liver disease and they have no idea why, so they just call it nash." NASH is a very real symptom of something bigger going on. It's definitely not BS. I do agree with him in finding the right doctor and Mayo is a great step. I was diagnosed in 2010, having been in the hospital for 9 days and a very wise hospitalist talked me into a liver biopsy. I found I have hereditary hemochromatosis. I had heavy steatosis and my ferritin was > 3500. I don't see how I didn't go into liver failure or progress to Cirrhosis. I have been followed by a Hematologist and Gastrointerologist-who prefers my Hem to handle my hemochromatosis. I worked for my Hem for 4 years (as a nurse in his chemo room) and as fine a doctor as he is with Cancer, he and no one else have really shown a great deal of interest in my HH. Hemochromatosis isn't a "sexy" disease so it is often misunderstood and undertreated. So I have been to Mayo in Jacksonville, FL in January of this year, and it was the best thing I've done. Jax Mayo has a Hepatologist who sees Hemochromatosis patients 2 days a week. I had a very, very comprehensive workup. I believe if you got a diagnosis beyond just a symptom (NASH) you would have more hope and less fear. See if you can find a Hem or GI/Hepatologist in your area to get a liver biopsy on you. That's a starting point. Whomever diagnosed the NASH should be able to help you out. It may be HH, may not be, may be in part. But get in as quickly as possible. Don't fret. We are here for you. I'm not on this site much, so you can email me at shutterbug500@gmail.com. Gods speed.
I had to go to two separate hospitals before anyone took me seriously. I was assumed to be an alcoholic or druggie and had to prove otherwise with a peth test. The doctors at the hospital couldn’t find the source of my stage 4 cirrhosis so they chose to diagnose me with Nash and honestly I don’t care because that diagnosis got me in the transplant list.
I live in south Florida and see doctors at both the Mayo Clinic and the Cleveland clinic. You will never get the info that you deserve via the doctors or google it’s absolutely a learning experience that unfortunately takes time and patience.
I know the pain is intolerable and I’m sorry. The only thing that helped me before my meds were adjusted was sleeping in an upright position and a heating pad.
I wish you all the best and am happy to share anything I can to help you through this.