Episode #2 | Immediately After My Diagnosis - Liver Disease & Cirrhosis

In early January 2022 the hospitals made the determination that due to my condition(s) they had done all that they could medically do for me. I was sent home so I could be "more comfortable".
East TN Liver Disease & Cirrhosis Support
groups/12260...
#cirrhosis #liverdisease #livercirrhosis #support

[@deniseshell9170]

thank you for sharing your story. My brother is 46 yrs old and going through the same thing. Same symptoms. Vodka has been the choice (any alcohol also). We can get him to the hospital after begging and they make him feel better (drain his abdomen, meds, etc). Once he is released, he is back to drinking within days to a few weeks. He says he doesn't need help. He's got this. I worry everyday how much time I have left with my lifetime best friend 😞

[@fortressfarms82]

My better half saved me. She never gave up. She does my meds everyday, takes me to all Drs. appointments, and was there through all of the crap that led up to it. We've talked and at some point she will do a video "From Her Perspective".

[@pascopirate]

I hope you get better Nick. Ive been there. I understand everything you are saying.

[@deeder001]

YES! My body temp was fine, in fact it was always 98 or 99 degrees, but always had the sensation that I was cold. Used an electric space heater in my room and cranked it up. My poor mother would come into the room to help me with something, change the paracentesis dressing that was soaking through to the sheets or something else, and would be overcome by the heat after a few minutes, had to step out for a few minutes before returning. I would sit out in the sun, too, and immediately fall asleep when it was 90 degrees out. I think this part may actually be the renal failure? A friend of mine had kidney disease, needed dialysis two or three times per week, his liver was fine. He reported exactly the same thing, could NOT get warm and always had the heat cranked up beyond anyone else's tolerance until he received a kidney transplant!

[@ladonnasimpson2954]

Thank you ♥️🙏🏽

[@farberam]

My brother has been given 6 months to 2 years from his alcoholic hepatitis diagnosis. I’ve been trying to learn everything I can about it and how people can recover from the extreme damage that has been self inflicted. Thanks for sharing your story.

[@fortressfarms82]

It's my pleasure friend. We were lost and didn't know what to do. I have other videos where I talk about the uncertainty & fear along with the fact that your prognosis not being a death sentence. If there is anything specific you'd like me to discuss or research just let me know. I'm NOT a Dr., medical provider but I can speak through my personal experiences.

[@mark70s29]

Yes it is self inflicted..but..as in my case drinking kept me going, ironicly.. due to my bipolar issue.

[@markgordon8146]

Try tell a drinker not to drink.....im a survivor...went on HIGH protein diet..9 years sober..no junk food..also nuts..goat milk..ect.....

[@stocksfield100]

Thanks for info, keep well

[@Eros13adios]

20 years does come fast to your mind when they tell you all the problems you've developed. Drinking frequently or every weekend becomes something that one could adopt routinely that one day them Doctor's could have the bad news ready to deliver to you..Then you look back to your life and wondered,where those 20 years went. 🍺 😳🧐🤔

[@smokeyarmstrong8292]

Had a very similar experience in late 2021...I was on the same horrible fluid restriction and was beyond miserable. Drinking that little bit of diet Shasta was the highlight of my day...

[@Coffeechat1979]

My 25 year old son is going through this right now 😢 He just came home from a 16 day stay in the hospital 9 of those on life support. Its been very scary for sure, he has the ascites with his belly but every time they drain it he fills right back up within 24 hrs. They have him on all kinds of meds but the biggest is that lactalose I think is what its called. He takes it 3 times a day and because his liver isnt functioning the doctors said that medicine is what flushes the toxins and poisons out. We go in tomorrom to talk to his primary about getting him on the transplant list. The crazy part is they think he has had a bad liver since he was born and that even the two years he did drink would not have done this to his liver. Hes not drank in over two years and when he did it was right after he turned 21 and he drank only beer. Im not sure if that matters or not but like I said they said his liver is so bad that it looks like an 80year old liver whose been drinking for over 20 years on an everyday basis. That the little he did drink should not have done this so their literally at a loss. When he was in the ICU they kept telling us that he would be transferred to another hospital that does the transplants because the hospital he was at didnt do them bit that wouldnt happen until they got him stable enough to tranfer. It never happened they literally got him stable and sent him home. He lost a total of 7 pints of blood and had to have 6 places in his esphogus banded to stop the bleeding. It was so scary this was the second time he had bleed like that but the first time wasnt as bad and they never spoke of liver cirhossis during that stay. They also never told us that it could happen again with the bleeding. I hate that hospital and I swear I will never have any of my family go back to that shitty hospital! Sorry im venting but I also wanted to say thank you for your story and putting it all out there because Im trying to research and find everything I can on this disease. Its nice to hear it from the people that have or is going through it because doctors just sugar coat everything and its so irritating.

[@fortressfarms82]

I completely understand! When I was in the hospital I was having to have blood transfusions because I was passing so much blood. Banding really does do a lot of good things in the short-term and often they hold for the long-term. At his age he has a benefit because of how yummy is the liver can repair a lot. Hospitals will say that he has a liver of an eighty-year-old because honestly they have very little faith in recovery initially especially with cirrhosis. It's incredibly sad because they don't believe that people have the ability to turn themselves around because of all of the traumatic news that's being given all at once. It sounds like you're doing absolutely all of the right things. I know often the doctors are very vague at the information that they give because they're never optimistic about cirrhosis patients. Keep asking a lot of questions and never be afraid that you're asking too many. They will give you answers as long as they see that you are being persistent. It took us months to find out what the right questions were to ask but if you watch a lot of my videos You'll see some of the stuff that we found out. Stay strong for your son because he needs it and he sounds like a fighter!

[@Coffeechat1979]

@@fortressfarms82 Thank you, you have actually helped more than you know in understanding. Because your right the hospital basically told us in the beginning that we needed to pray for a miracle and that his age was the only thing on his side but than turns around and releases him. We actually didn't understand why because he is still very sick. He's using a cane to walk and has moments of confusion and not remembering certain situations. I think we had to just remember that even though he means a lot to his family that to the doctors they can't have or get emotionally attached. They've got to treat him just like any other patient but of course it iritates my husband and I but thats on us.

[@fortressfarms82]

@@Coffeechat1979 I completely understand but I can tell you that if he keeps a positive attitude and is willing to do the work the doctors tell him to do and even takes different initiatives on his own then the way that the Dodgers will respond will be completely different than they are now. He needs to ask the Physicians specifically what he has to do to live. They can only do so much for them to a certain point and his current condition but if he continues to fight and becomes that squeaky wheel to the doctors showing them that he is making all of the right changes and then some both you and he will be amazed at how his health-care will adapt.

[@DR3itmatters]

How is son doing?

[@Coffeechat1979]

@@DR3itmatters not good unfortunately 😔 He's had to be hospitalized on his birthday in August for the HE. It was so bad he didn't know who or even where he was. When the ambulance got him to the hospital he asked them where he was because he couldn't remember. We found out during that stay that he has what's called Hyponatremia where his sodium levels will get so low that his HE basically will take over. So they put him on sodium bicartrate and sennex-s along with all the other meds he was already on. They also put him on xanax a very low dose with abilify. He's still going in every couple days to have the fluid drained from his belly, we can't seem to get that under control. They were only taking 4-5ml before and now their taking 10ml every time but even than he fills back up so quick within a 24hr span its crazy. He has talked to UW transplant consultant and has a whole plethera of stuff to do in order to get one the list but most days he can't stay awake for any longer than maybe an hour tops. Needless to say its still bad if not worse and its so hard to watch because all you want to do is take it away, all of it! 😔😢

[@suewoo5]

Looking great for a man who had 1 foot in the grave.

[@fortressfarms82]

Thank you Cait! I love living 😋!

[@LilyWillow92585]

Thank you so much for sharing. What liver related medications were or are you taking? God Bless You!

[@fortressfarms82]

I'm on a slew of different medications. I think my last count is 14 different meds but not all of them are for the liver. Xifaxan is a huge one it's almost a must. There are also different medications like spironolactone and torsemide that will keep down the fluid retention. Granted you'll have to pee about every 45 minutes but it's much better than having ascites build up. You might also want to ask about blood pressure medication because even if he doesn't have high blood pressure now it can cause major problems in the portal vein that's in the liver. That can cause varices veins and internal bleeding. Also stay away from food with high sodium. Medications may also include things for acid reflux nausea and other things of that nature.

[@conniebaker1958]

Have you tried milk thistle? You can find it in the supplements Walmart it’s pretty . Some people have seen improvement with it.

[@jonathanpeirce]

I am happy you are doing better. Stay strong. May I please ask how much you were drinking? You mentioned you went hard for 20 years and I was hoping you could share with no judgement.

[@fortressfarms82]

At my peak (worst) I was drinking a 5th of 80 proof a day. Even more in the final year.. It was awful and the internal sadness I was feeling was overpowering. So, I just drank more to make that stop. I haven't had a drink since November 8th, 2021.

[@jonathanpeirce]

@@fortressfarms82 I really appreciate you sharing your story with us like this. I am sending healthy wishes and strength your way.

[@fortressfarms82]

​@@jonathanpeirce I just hope to help others with their journey. I know how terrifying it is and overwhelming. I didn't have an outlet or in person resource to educate me so I want to create one. :-)

[@deeder001]

​@@fortressfarms82 Damn I feel somewhat cheated! lol My max regular consumption was about 500ml whiskey per day. As I have learned the hard way, it is a dangerous game to gauge the safety of one's consumption compared to others. Every person has an individually unique biology. I always took some comfort that I was not drinking as much as so many others, and experiencing fewer 'problems' or effects (i.e. no DUIs or accidents, no black outs or memory loss). WRONG!

[@texasmade880]

How did you get your memory back. My daughters father is going through this. He don’t remember who anyone is and it’s heartbreaking

[@fortressfarms82]

It took me a few months for things to really balance out. I still do not remember the first month-and-a-half or so of my diagnosis. It's a complete blackout. I was basically hallucinating so I can tell people what I was hallucinating and seeing but none of it was real. That's been over a year ago and it's still blank to me. But once the encephalopathy cleared up which took a while my normal brain function returned. My memory was still very foggy and I had to be reminded of things and I couldn't carry on a conversation for more than 2 or 3 minutes without getting lost or confused. But it did improve and I'm back to my normal memory with the exception of that blackout and hallucination time.

[@philraso1433]

What medications were you taking for liver? I take milk thistle and drink coffee and green tea with ginger root eat a lot of greens as well

[@fortressfarms82]

At this time I prefer not to mention my specific medications. Primarily because I'm not a medical professional and don't want to give false reccomendations. I will say that coffee is a staple for me. As well as probiotics to maintain good digestion. Perscribed meds for your liver do have side effects that often need another med to balance it out. Your Dr. will be much more educated on your individual situation. My FB group (link in the description) has some really good info from medical sources on liver health. 🙂

[@KABLAMM_]

I know it's hard to answer, but how much were you drinking daily, weekly, over those 20 years? It's important for people to know so they can measure themselves.

[@fortressfarms82]

I was a liter of vodka a day drinker.

[@deeder001]

As I have learned the hard way, this is a dangerous game to gauge the relative 'safety' of one's consumption compared to others. Every person has an individually unique biology, genetic and environmental risk factors. I always took some comfort or sense of security that I was not drinking as much as so many others report, and experiencing fewer 'problems' or effects (e.g. no DUIs or accidents, no black outs or memory loss). WRONG! My max regular consumption was about 500ml whiskey per day. And it only took about five years of drinking daily. Before that, I was very much a moderate drinker who would often go few to several days without drinking and it wasn't any effort or trouble.

[@pascopirate]

Drink Cokecola and have people pray for you. Don't ever go to hospice. Its a depressing place.