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