What is liver disease really like, a ... - Living with Fatty...

Living with Fatty Liver and NASH

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What is liver disease really like, a post transplant reflection on the experience

nash2
nash2Administrator

a good read from a cirrhosis warrior

There are some things I would like to say. Things I realized over a long period of time. Your mileage may vary, but I bet some things will ring familiar. I hope my articulation of them, serves, such as it is.

When you have cirrhosis, it is the beginning of a reduction of your liver's ability to deal with its daily chores. The inability to process food to the extent it should be processed and the inability to quickly rid the body of toxins sets off a chain reaction of events that gets increasingly difficult to tolerate.

By the breaking down of proteins, amino acids, fats and other compounds, the liver produces the chemical building blocks for the entire metabolic system. The glands depend upon it for hormones production such as adrenaline, testosterone, estrogen etc…. The brain relies upon it for chemicals such as melatonin, serotonin. endorphins. These are the very building blocks of sleep, happiness, and sense of wellbeing. As the liver deteriorates, these things become harder to experience. It wears upon the soul if you let it, or if you don’t.

As earlier stated, along with not providing these positive things, the damage to the liver, reduces its ability to filter out contaminants. Running on dirty blood becomes increasingly problematic, as one can imagine, but it is far worse to feel. The key is to reduce the intake of toxins as much as possible and manage portions well, to make it easier for the liver.

In my opinion, beyond eliminating the cause, small frequent portions of appropriate food (especially protein), totaling a healthy amount, is the most positive impact a cirrhosis patient can have on their situation. By easing up on your liver, you will get more of what is necessary from it, giving you the best quality of life possible. You will also be maximizing the liver’s ability to filter contaminants. It's like your washer is not big enough to do it all in 3 loads. 7 small loads would do a better job. Ascites is what happens when you are doing too big a load and stuff falls out. But nothing gets clean either. The not clean part is HE. If you or your loved one is getting bad, really, this thinking helps. Small loads frequently. Think about it. Own it.

If you or a loved one is experiencing cirrhosis, I think you are at least beginning to understand what I am trying to express. However, it is difficult and it is probably unreasonable to expect anyone unaffected to truly understand. Many caregivers do because of the love shared, but even that is sorely taxed at times. Doctors simply can’t deal with the reality, it seems to me. I guess the cost of relating is too expensive. Hell, if they related to the suffering of every patient they would probably lose function and become useless babbling idiots in short order. They see much suffering and there is little they can do save react to the symptoms, try to control them and transplant when they/you can’t (if qualified). I wasn’t, then I was, now I am.

I am thankful, however:

The science experiment America has done with its food is a failure. Everything is flavored corn syrup. Which is really not even a thing, unless you want to make it, the corn lobby says we do. I mean how much cheaper can it be than sugar (bad enough). Thank you, Corn Lobby.

Doctors would be well to explain these things to patients to get them on an active role with their health. Educating them to make better choices and manage their digestive system to the maximum. To teach about foods. How choosing this food or that can help your meds work or even in mild cases eliminate the need for them (follow Doctors advice here). How important it is to manage food intake in the best possible manner. It just makes obvious sense. However, it seems to me, Doctors either don’t understand the positive impact the best possible diet can make (scary thought), or they don’t want to go through the trouble (another scary thought). Truthfully, I don’t know what their deal is, but I suspect profit plays a role. Maybe I am just cynical, but other than stupidity, I cannot imagine another excuse.

Obtusely, they will say there is no pain in the liver because it has no nerves. What they fail to realize, or face; is there is a whole new nameless-sucky-experience they can’t even begin to imagine, as the liver progressively loses its ability to do its job. It begins to attack your manhood/womanhood, your energy, your ability to think, your skin, your ability to regulate heat, your ability to fall asleep, your ability to stay asleep. Even the chemicals, that energizes you in the daylight and calms you in the dark become absent. When you feel your ability to be happy, or even rest, slipping away, do we call that pain? Whatever, it sucks. Do what you can about it. No one healthy will understand the way you feel. It can’t be done with working equipment. This group helps a lot with that I think.

Earlier I mentioned our ability to tolerate. My ability to tolerate came over forty years of undiagnosed liver disease, beginning in the 70s with Hep C, and ending up with liver failure and Liver Cancer. Then a seeming remission of cancer and a transplant 4 months ago. I became increasingly worse over a long period of time. During this time, I had a feeling that I wasn’t as good as I should be, but I tolerated it. I even felt guilty that I was slowing down and feeling progressively worse. Ironically, that ever so slowly, stretched my ability to tolerate it even further, till I was almost dead.

Ok, so my point is this, If you have cirrhosis, I think you have already tolerated more than most people can understand. If you are like me though, somehow, you are glad that you now understand why your party has been so pooped. Even whilst it is. For damn sure, I felt bad about feeling bad and always felt I needed to explain. That dog don’t hunt and I recommend against it. Be willing to explain, but also be willing for others to fail to understand. Don’t pin your happiness on somebody’s ability to understand. Its freakin hard to wrap your mind around, and it’s happening to you, either vicariously, or actually. Just do the positive things you know will make a difference and keep learning what those things are. If this thing is gonna take you out (like I thought it was with me), I hope you make friends with that. I would be glad to share how I did. And seriously, if you value love and happiness, don’t make your caregiver be the police. If that ship done sailed; go dock alongside them quickly, you know you should. It will make things somewhat better.

I have said many words and I am sincere but clumsy. I hope some find use for my words and find some comfort. Please forgive whatever slights I have committed and for being so windy. I hope I don’t sound bitter, I am not. I am so grateful. I am thankful to my hero and his family. I wish for blessings upon all of you. I just had a few things I needed to say. There are a few more, but that’s another story, for another time. Till then, proper foods in proper proportion at the proper frequency.

POSTED WITH TJ'S PERMISSION

18 Replies
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Well, thats cheered me up .😕. Ten years cirrhosis, increased fatty liver, .. ten years of "being healthy.

That in itself has been a nightmare for me, i dont know if i have ever thought of making piece with the fact it's going to take me out of this life, i dont even think about it if i am honest . Could it be because i class myself as just existing and not living due to the daily affects of being tired or even more so insomnia, more than once ,especially since the new year when diagnosed with osteopenia of the hip and two prolapsed discs middle to lower back and now onset of osteoarthritis. Which imparts my mobility.

This is not the life i desire.

This is becoming a battle

My fight is giving up.

No.. i am not depressed so i know it's not mood related.. all i know is i am not getting any younger so why carry on living this way .no .. i will rephrase that. Not living. Existing.

nash2
nash2Administrator in reply to Millie09

This disease does wear you down. A lot of people here do know exactly what you mean. It is a journey that everyone makes in the end but no two are quite the same. I try to provide good information and support and I know that the research will eventually produce treatments so my personal goal is to stay alive long enough to see them come but one does reflect on the personal price at times.

Millie09
Millie09 in reply to nash2

Don't get me wrong, you provide excellent advise Wayne and yes i know it is a journey we all have to take but for some like me can only take so much.

4 drains from ascites,endoscopy, we have all been there. Science can only get better but that will.not be in my time line.

nash2
nash2Administrator in reply to Millie09

There is that balance for sure. Some of my comments are for the broader audience who follow this community. I do understand your feelings and false hope isn't helpful for most. I appreciate that you are willing to share such intimate feelings. I think it may help other people gain perspective on their own situation.

Millie09
Millie09 in reply to nash2

Well hopefully my thoughts will help someone else.

I'm only 48 and your comment could've been my own. i don't have much fight if any at all left. i don't understand why or how Im still existing...too sick to live, not sick enough to die

Hi rainyday , bless you.. i thought it was just me on this forum expressing the true facts of how liver disease be it alcohol or other can drag you down.

Yes for some they are that poorly they get the gift of a new chance at life. But when we are inbetween that is the hardest part to deal with. If ever you wish to message in private your most welcome.. linda

i stay out of most conversations because Im afraid if I say how i really feel I will sound like im whining or like Im bitter towards those on a transplant list ...im glad they have hope at least . .I am not a candidate for transplant. ..so I have no future, cant make plans, exhausted from trying to sleep waiting to get sick enough to die knowing being as sick as i am is the best Ill ever feel .....having no energy no motivation, no purpose. ..and it isnt depression , i dont dwell on it...i cant change it ..now i just wonder how long it's going to take...how long can a person just exist in this condition ...according to diagnosing doctor 3 to 5 years and Im only two years in ....doesnt give a person much to look forward too

nash2
nash2Administrator in reply to RainydaySuperstar

I wish I could offer something that would help, but this disease just attacks from all directions and sucks the strength right out of you. When I was trying to get a real diagnosis my sister was dying of cirrhosis. Very difficult. It was one of the things that caused me to form the Fatty Liver Foundation. The jury is still out as to how my course will go but I decided to try to warn people who have the disease but no idea that they do. I know it is a paltry reward, but you and Linda are heroines in my book. By sharing your stories you provide a warning to others and some of them will benefit.

Millie09
Millie09 in reply to nash2

So sorry to hear about your sister.

You should not keep out of conversation. You need to express how your feeling.

Im sorry to hear that you are not a candidate for transplant. But then even people who are or people with transplant it is not a cure it is but a treatment to the disease.

Transplanted people still have a lot of physical and psychological demands. I was told 2 years ago on liver for life forum that i should live as much as i could and not waste any more time pondering on the WHAT IFS ... don't get me wrong, i struggle every day with one symptom or another, 2 weeks now with upper right quadrant pain and now constant nausea. No longer eating chocolate! And that is not from choice but i do not want any.

I wished there was more i could say to you .

My moods go up and down like a yoyo.. very indecisive then all foggy brain then fatigue etc.. it really is an awful disease of which i am only myself to blame.

Im trying to reach out to tell others this is what happens when it is too late. If i can be honest without sounding self pity i really hope someone takes heed before they end up like we do.

nash2
nash2Administrator in reply to Millie09

Thanks Linda, I appreciate you providing that perspective. Our goal is to encourage people to understand this disease and their risks and patient stories are really important so thank you.

Wayne

Millie09
Millie09 in reply to nash2

Most welcome ..

I happened on to this site while I was researching the latest on NASH. I lost my Dad (both his brothers at earlier times as well) to liver cancer after the progression of NASH (inherited in our family) about 14 years ago. It's hard to believe the science behind this devastating disease has not advanced very much, if at all, in 14 years. Diet (weight loss) and exercise continue to be the advisable "treatment" for slowing the progression of this disease.

Best to all!

nash2
nash2Administrator in reply to 2014happy

Hi Happy, it is vexing that the history of progress with the disease has been so slow, but the tide has changed. There is a vast amount of research happening today. The next problem is that there aren't enough patient willing to participate in the clinical trials that have to be done so progress is delayed. That is why we advocate screening even though the medical profession doesn't agree.

fattyliverfoundation.org/pi...

Wayne

Thanks Wayne! Although having a liver biopsy is a scary proposition for me yet the only way to confirm a NASH diagnosis.

nash2
nash2Administrator in reply to 2014happy

The idea is a bit scary and like any procedure, there are some risks but with biopsy, they aren't high. I have had 3 and while it isn't something to look forward to it does produce important information and knowledge is key to your doing what you can with this disease.

Thank you for the encouragement and this wonderful forum!!!

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