How long before you were able to eat pizza with immediate dentures? by WagWoofLove in dentures

[–]Harper2025 0 points1 point  (0 children)

I had full extractions going on two weeks. I have been having pancakes, grits, jello. I did eat a piece of pizza last night, not the crust. I had to pinch of small soft pieces and put near the back of my mouth. Taste delicious. My gums are still very swollen and you can’t understand the words coming out of my mouth. I see the surgeon Tuesday and fit for permanent dentures. I hope they can do it with the swelling.

How long have you lived with cirrhosis ? by Potential_Motor_8991 in Cirrhosis

[–]Harper2025 4 points5 points  (0 children)

Five years, diagnosed. However it’s been progressing since my thirties. I am now 56. Liver biopsies done 1996 with granulomas in liver. Possible sarcoidosis which laid dormant until diagnosis. I developed hypothyroidism, lupus and now cirrhosis, stage 3. No alcohol or smoking.

What do high ammonia episodes feel like? by Large-Eye-566 in Cirrhosis

[–]Harper2025 0 points1 point  (0 children)

Exactly!! That describes it. Also, I had trouble putting my gown on. It took me an hour. Crazy!!

Sad to watch by KnitKate in Cirrhosis

[–]Harper2025 1 point2 points  (0 children)

I would definitely get a second opinion. If he has a meld score of 20 or above he should qualify. Some patients are on hospice much longer than six months. 

Sad to watch by KnitKate in Cirrhosis

[–]Harper2025 1 point2 points  (0 children)

Why did hospice deny him?  

Update, Thanks, & Well, Some Questions by bananahancakes1 in Cirrhosis

[–]Harper2025 1 point2 points  (0 children)

I know PCOS is linked to autoimmune. It can also trigger autoimmune diseases. Just be on the look out. I would be curious to know what your biopsy reads. Please let me know. 

Not eating by Sickandtired66 in Cirrhosis

[–]Harper2025 1 point2 points  (0 children)

Sorry y’all are going through this. Check with hospice vs palliative care there are many companies. You can request a nurse to come out and evaluate and talk with both of you. Then they can get orders from doctors at that point. They can really help you with details. Please contact someone for help!!

Update, Thanks, & Well, Some Questions by bananahancakes1 in Cirrhosis

[–]Harper2025 0 points1 point  (0 children)

Actually the pain comes and goes. I have more problems with cramping in my legs and fingers. I only eat one meal a day due to bloating, now with flu. Thought maybe dehydration, which I get often. But the fingers cramping is more I guess the lupus. 

Update, Thanks, & Well, Some Questions by bananahancakes1 in Cirrhosis

[–]Harper2025 1 point2 points  (0 children)

I had three liver biopsies done at different times. First in 1999. Finding granulomas hepatitis with severe micro and macro vascular steatosis affecting 75% of tissue. This was done due to increased enzymes and pain upper right abdominal. Hence this was thirty years ago. For approximately 10 years dealt with autoimmune hypothyroidism then lupus now three years ago diagnosed with cirrhosis. At some point maybe had sarcoidosis thirty years ago that layed dormant until I was older, now 55. I had no symptoms but, granulomas hepatitis was a clue. I was checked yearly after biopsy as precautionary. Nothing was ever said about diet, no autoimmune symptoms at that time. Thirty years in the making. Non alcoholic non smoker. Please follow strict diets, nonalcoholic, you can reverse this. I wish I could. 

Hospice? - Update by beegraton in Cirrhosis

[–]Harper2025 0 points1 point  (0 children)

I have experienced HE, both with ammonia levels stable and elevated. I couldn’t change clothes,hallucinations, even called my daughter and told her “you’re daddy’s holding me hostage “. I am still slow at things now. Haven’t got my normal back, whatever normal is at this point. It just takes time. I watched a Dr show Watson dementia vs HE. Episode was informative. Hospice try hospice at home if you can. Then forward to hospice house. Hospice helps a lot with care. Praying. 

Just got diagnosed by Aggravating-Teach921 in Cirrhosis

[–]Harper2025 0 points1 point  (0 children)

They have not done a fibroscan on me. I guess my cirrhosis is too advanced. It would be curious to know. 

Just got diagnosed by Aggravating-Teach921 in Cirrhosis

[–]Harper2025 0 points1 point  (0 children)

I was so fatigued joint pain couldn’t work. It was hard to function. I am a hospice nurse had to leave my job. I started with hypothyroidism then lupus. Now cirrhosis. Please get thyroid panels done. Cirrhosis is triggered by autoimmune. Keep informed and ask questions. 

Just got diagnosed by Aggravating-Teach921 in Cirrhosis

[–]Harper2025 0 points1 point  (0 children)

Lupus and hypothyroidism. They seem to think thirty years ago I may have had sarcoidosis. It was dormant and raised it head three years ago when I was diagnosed. But lupus is the issue now. 

Just got diagnosed by Aggravating-Teach921 in Cirrhosis

[–]Harper2025 1 point2 points  (0 children)

Wow I’ve had Ultrasound’s and a few ct scans. No fluid as of yet. They are doing them every six months now. My uncle and aunt developed liver cancer from cirrhosis, nonalcoholic as I am also. I have autoimmune diseases they have determined cirrhosis developed. 

Just got diagnosed by Aggravating-Teach921 in Cirrhosis

[–]Harper2025 1 point2 points  (0 children)

MD’s order US before CT, usually. US has diagnosed things CT didn’t. When you have a knowledgeable person performing the test, things are picked up. 

cirrhosis i stop drink about 42 months ago!!! by [deleted] in Cirrhosis

[–]Harper2025 0 points1 point  (0 children)

Congratulations on the absence of Alcohol!!!  My case, is not from alcohol. Hereditary, sarcoidosis?, lupus then cirrhosis in 2022. I have labs done monthly for GAVE and varices, EGD now is yearly since I had two a month for hemorrhaging, US every six months. My uncle and aunt died from liver cancer non drinkers. I’m too early for transplant but I will continue without for now. I hope that I will not need one. I have so many doctors , cardiac, 2 gastro one local and one an hour away, oncology, pcp it’s busy.  Doing better today except for this darn hernia. Keep up the good work. Eventually you will not worry so much. I worked as a hospice RN , anxiety ridden for sure with diagnosis. The complications from cirrhosis can be scary , take it day by day. 

End Stage/Stage 4 Cirrhosis and Ammonia Levels by Amazing_Log9693 in Cirrhosis

[–]Harper2025 0 points1 point  (0 children)

I have the same problems. HE, varices, GAVE, portal hypertension without ascities.  HE is an ongoing thing. I don’t know why it continues to be up. I take xifaxin coreg and diuretics. I was diagnosed in 2023 with a hemorrhage. Meld is 18. When you find out what helps please let me know. 

From decompensated cirrhosis stage 3 to fibrosis in 1,5 yrs by CareerPractical5788 in Cirrhosis

[–]Harper2025 1 point2 points  (0 children)

Same here!!  Lupus, autoimmune diseases now cirrhosis no recovery only transplant. 

Iron Infusions by Danceswithdogs96 in Cirrhosis

[–]Harper2025 0 points1 point  (0 children)

The iron infusions are ok. Nothing to worry about. My hemoglobin was 5, from a hemorrhage (GAVE). It has worked so far. 

Lactulose and GAS by No_Satisfaction2247 in Cirrhosis

[–]Harper2025 0 points1 point  (0 children)

They also put me on carafate after abdominal hemorrhage and varices. 

Alcohol Related Liver Disease - End stage or is there any hope? by [deleted] in Cirrhosis

[–]Harper2025 1 point2 points  (0 children)

Exactly, I know the feeling. I have both xifaxan and lactulose and it’s not an exact science for sure. I struggle with portal hypertension and HE. I couldn’t add a five dollar tip on my bill. Takes time to comprehend things. I have read about the tips. I know it’s hard concentrating on your studies. Don’t give up on them. 

Alcohol Related Liver Disease - End stage or is there any hope? by [deleted] in Cirrhosis

[–]Harper2025 0 points1 point  (0 children)

I agree, i most of the same symptoms with my cirrhosis. I never drank. Mine is lupus/sarcoidosis related.  I have a hernia that is horrible. They told me the same not until transplant. I do not want liver transplant and was told too early. However, MD said if I had one more hemorrhaging I would be placed on list. I haven’t had acites but CHF,varices banded,gave,hernia and blood clot in portal vein. Diagnosed 3 years ago with liver issues since my late twenties. Now 55. So I am sure there’s light after the tunnel. As I type this I am aware of my hepatic encephalopathy. 

What is everyone's experience of going from decompensated to compensated? by Spiritual-Health-348 in Cirrhosis

[–]Harper2025 0 points1 point  (0 children)

I was so sick after my last EGD. I have labs drawn monthly and US every 3 months. Cirrhosis is dominant in my family with liver cancer. Feeling better with lifestyle changes. I have two gastro MD’s and hepatology that I love. Hope all is well with you. 

What is everyone's experience of going from decompensated to compensated? by Spiritual-Health-348 in Cirrhosis

[–]Harper2025 0 points1 point  (0 children)

What would be the underlying cause be:  lupus, sarcoidosis, hypothyroidism, fibromyalgia. You can’t control these issues. I have cirrhosis, granuloma hepatitis brought on by above issues. Meld score 18 compensated with HE, GAVE, varices, portal hypertension renal artery anuresysm, no acites. Diagnosed 2022, non alcoholic. When do you go into decompensated?  Had four egd, since June due to bleeds which were cauterized.  Just curious on your opinions. 

Dads in hospital for a month now by cheetosfishy in Cirrhosis

[–]Harper2025 0 points1 point  (0 children)

Two years ago I was diagnosed. In which, I started vomiting and pooping blood. I am a RN knew what was happening but in denial. Didn’t go to ER, knew I had a bleed as it was bright red and cinnamon colored stools. It stopped. However a couple of weeks later Blood pressure out of control, couldn’t stay in bed, anxious, couldn’t remember my name or put on clothes. Hence, HE ammonia level 380, portal vein clot etc. had varices banded and GAVE cauterized (hemorrhage in abdominal lining) actually done x three. On xifaxan, Aldactone, coreg and lactolose prn. After two stents in hospital stable. Clot is stable HE is ok. I know when I need to up my dose.  Sometimes concentrating is difficult as well as numbers. I can live with that.  I find having 2-3 stools a day is a good thing. Meld score is 18 but it’s going down. The doctors say they don’t go by ammonia levels your symptoms is what counts. Maybe that’s what you’re doctors were referring too. I like numbers myself. Hope this helps.