Episode #5 | Your Prognosis Isn't a DEATH SENTENCE!!! - Liver Disease & Cirrhosis
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- เผยแพร่เมื่อ 16 ก.พ. 2023
- All of the doctors gave me 90 days to live at the most. Well, it's now 466 days later....
Prognosis - the prospect of recovery as anticipated from the usual course of disease or peculiarities of the case (Meriam - Webster’s dictionary)
East Tennessee Liver Disease & Cirrhosis Support Clique (NO JUDGEMENT!!) / 1226017141344912
#cirrhosis, #liverdisease, #vanderbilt, #alcoholicsanonymous, #alcoholism, #addictionrecovery, #meld, #support
My doc's haven't given me a time line for my end stage nafld cirrhosis. My motto has been "keep on" keeping on with my Lord. 74yo next month! Appreciate your podcasts ❤😊 Having liver disease can b lonely
Sending 🙏 ❤❤
My timeline is possibly 2 years, 8 months ago. Take me now... this disease is brutal. I will be stopping all medical intervention. I can no longer endure perinstis every 2 weeks, 7 medications a day. They are gross and not worth the effort. It takes me hours to get the nerve to take the next one. I am happy you have support, my family are a dumpster fire.
Decompit cirrhosis, end of life, meld score 24. Liver transplant or death. Who can afford the travel, medications, and stress not me. I can barely make it to my Dr 15 miles away. Transplant center Is 4 + hours away weigh I am 88 lbs and jaundiced, and bruised from head to toe. I want to just go home with the lord and my parents. Simple request.
Really enjoying hearing your story. It takes a lot of strength to tell your story to a bunch of complete strangers. Wishing the best of health to you.
Thank you friend!
I have recently been diagnosed but luck because I don't have any symptoms. My morale went way down. Thank you so much for your inspiring videos. At moments like this is where hope is needed more than anything. Researching the prognosis from literature does not help, it is very negative. However, by listening to testimonials such as yours, I came to realize that it is better not to depend in those statistics and better focus on lifestyle changes and to keep a calm mind.
Hello from CA
I too have end stage cirrhosis . Older, not many symptoms but fatigue. I just wanted to speak hope, love and peace to you this day. 🙏 ❤😊
Well said, u motivate me to be strong. For my twins i push myself to be strong.
I wish i knew what damage i was doing to myself..hell i have meld. My score is 12 or 15 and have been taken off the transplant list. I was told first I need a transplant but now they said its risky. First I had hope then i gave up but my kids need me and I want to live for them..one twin has cerebral palsy. First the dr.s couldn't pin point the problem..changed dr. Then covid. I drank before but ditched it a couple of years ago and had soda. Thanks for reading and takecare🥦🍍🥑😊
Hi my name is David i am in england. I got my end stage cirrhosis diagnosis in september just gone. Over here we have the NHS which is on its knees after covid. Since September I have heard nothing from my consultant. I have spent christmas thinking I am going to die. I stumbled across your you tube channel and watched your vids escpecially episode 5 and it has given me hope, thank you. Before xmas i was so scared and in shock from my diagnosis. Anyway I am going now to take your advice and not resign to a death sentence. I will carry on watching your channel and hopefully pick up some tips.
My friend, determination is the #1 medicine. I'm so glad that you find my channel helpful. You hear so many things about cirrhosis much of which is not true. It doesn't mean that you're days from death. If you've been diagnosed and can still get around then it just means you need to change some things. THOSE THINGS ARE DIFFERENT FOR EVERYONE but make them a priority. I'm nothing special at all. Just a guy who understands the fear that comes with a diagnosis like we have. Make it a goal to prove the doctors wrong. Even tell them that you're going to surprise them ;-)
The videos on this channel are so good, I hope someone who might be going through the same thing watches these videos and that it helps. I’m watching these just thinking about how everything that’s gets discussed, I went through (he’s actually gone through one or two things that I didn’t experience and same the other way). And this video is no difference. April 2017 I was given 3 months to live, 15 months later I received a liver. They base how long you have according to your meld score. And mine was wayyyyyyyyy high. But my body wouldn’t let me go and it fought even when I didn’t want to. I’m grateful I’m here to watch these videos. It’s so great to hear from someone else who went through it. Thank you!
I'm so glad that this is helping you and others! It truly warms my heart and fills me with joy! The road is hard and the path is often unknown. When I was diagnosed I couldn't find any good information from those with the same experience. So I decided to make one. based on mine. Thanks again!
@@fortressfarms82 oh you’re very welcome. Like I said, I have shared much of your experiences. Were you home or at the hospital when you got the news of a liver being available and you were a match?
@@btoal2001 I have not received a new liver yet. When I was diagnosed my meld score was in the high 30s and I was retaining so much fluid that it was impossible to operate on me. Over the last year I changed everything from my diet my lifestyle and of course stop drinking completely. I followed my doctor's directions exactly. My meld score now stays in the high teens & sometimes low 20's. But I've balance for the moment. I still have to have blood work done every month, ultrasounds usually every 3 to 6 months, and appointments every 3 months with my GI nephrologist and primary care. I also have regular appointments with my transplant team at Vanderbilt who monitors me closely. When my medication stops being as effective and I begin to decline I will have completed all of the protocol that was given to me by them to be activated for a transplant. The hard part is the uncertainty but I have a very strong will. Thank you again so much for your support!
@@fortressfarms82 oh good yes I am thinking of you, to be honest, you look really good in your videos I just assumed you had recently received a liver. Keep fighting. Do not give up. If you need someone to speak with about your situation, reach out. My meld score was 34 when they were preparing me and my family for the end. I’ll never forget the night, my mother left the hospital for the night. I went into the bathroom, I was so yellow from the jaundice, I was sick and in pain and I remember thinking that I couldn’t keeping loved ones up to doing this and I was so miserable that I couldn’t fight any more. I decided it might be time to end it. I got back into my hospital bed and cried. And then, no lie, an hour later a nurse came running into my room and said “ Dee found a liver and it’s all yours. This time tomorrow you’ll have a new liver”. When she walked out of my room, I started crying again. But this time the joy is why I cried.
Thankyou from across the pond my wife has been diagnosed with cirrhosis and ascites a month ago we have both gone very very low salt, Also taking milk thistle and tudca and trying to carry on as normal as possible 2 hr walk most days, Take care.
Keep going friend! It can be so hard on relationships but be there for eachother. You have No idea how far that goes! Keep us posted on how things are going. 💚🙂✌️
Good for you man! God Speed!
Thank you so much for the inspiration.
You are so welcome!
This is an awesome message 🤙
🙂
Good stuff brother. Glad to see you are feeling well. Been too long since we’ve talked. We should get coffee, or a bagel sometime. Would be great to catch up.
Is this Chad? How goes it? I love me some bagels :-).
Here’s a question if you read my comments. A year or so when you’re starting to see people and they tell you look good, and you think they really mean it this time (I’m 5’9 and I’m comfortable at 155-160 lbs. I spent most of the first year at 136). Did you get people who may have come to visit, or saw pictures say to you “I don’t think I could ever go through all of that. I think I would have died.” I tell them all, five years before I got sick I would have said the same thing, did I go through those suicidal bouts, you bet I did. But a large majority of the time I was sick I decided I wanted to live. No one thinks they can do it until they do it.
You never know what you're capable of until you're forced to.
I too have cirrhosis,Stage 1 compensated. Yet I alread have mild portal hypertension ? Im diabetic too and the calvedilol blocker was causing my sugar to run high. Not sure I can take them l have small verices. Not big enough to band, but wanted me to take beta blockers which raises my blood sugar ? Best of luck to you❤
Have you checked out dr berg?
Can you make your intro unforgiven by metallica.
I'd love to! But I don't want to risk a TH-cam copyright strike 🙂.
@@fortressfarms82 good videos..
You tube has come along way.
There is so much education and awareness.
It's good to c that people actually care for the most part.
@@SuperJoker759 Thanks! I can't speak for TH-cam but I'm glad I'm helping through my experiences. When I was diagnosed we had no one to talk to or ask real questions about what was happening. We had to learn the hard way as we went. I just hope I'm providibg something of substance. 😉
It does help.
It is a good thing you do and it is appreciated.
Kind regards from Leonard.
@@SuperJoker759 thanks Leonard!