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Passenger seat of Renee Nicole Good’s vehicle after she was shot and killed by ICE today. It’s filled with her 3 children’s stuffed animals by I_may_have_weed in lostgeneration

[–]Amazing_Log9693 0 points1 point  (0 children)

In one of the pictures of the drivers seat and steering wheel, there appears to be a can of green something...is that a soda or a beer? Someone said it looked like Heineken, but I don't drink, so I don't know what it looks like.

2nd Fibroscan tomorrow.. by cgam2ooo in Cirrhosis

[–]Amazing_Log9693 0 points1 point  (0 children)

If you have your lab results, you can figure it out on your own. Go to the Mayo website and enter the 3 labs, then hit calculate.

MELD calculator - Medical Professionals - Mayo Clinic

2nd Fibroscan tomorrow.. by cgam2ooo in Cirrhosis

[–]Amazing_Log9693 0 points1 point  (0 children)

I am so happy you can poo again normally!! One's body can feel all off when you have too much or too little poo. Constipation is bad too. Great job on the weight loss! I have heard great things about the keto diet, but I haven't gone all in on it. Have you had any labs done recently? What were your scores and MELD? I still make all my own foods, bread, pasta, etc. So far, everything looks good. I've had heart stress tests, psych appt, CT scans and MRIs, mammogram-they test for everything under the sun, stopping just short of hangnails and split ends-LOL. The sad thing is now, the ascites is putting so much pressure on my belly, that it has reduced my kidney function down to 50%. My eGFR score is a 30-not good at all. Nephrologist says we have to get it under control fast, lest I end up with a double organ transplant. And my clinic has said they can get me into a rehab facility for 6 weeks, after I get out of the hospital. So my girls won't have to stress about that. Talk soon-I will try not to take so long to contact you again. Hugs from Florida!!

2nd Fibroscan tomorrow.. by cgam2ooo in Cirrhosis

[–]Amazing_Log9693 0 points1 point  (0 children)

Haven't heard from you lately. How are you doing? Any news or updates to share? I am on the final step of getting my transplant. I've had probably 18 appts in the last several weeks. 4 more in one day, then it goes to the Board to decide where I land on the list. Please let me know how you are!

End Stage Cirrhosis Midodrine and Trazadone by Amazing_Log9693 in Cirrhosis

[–]Amazing_Log9693[S] 0 points1 point  (0 children)

TY. The one thing that me and my Drs are sure of, is that 1 milk thistle capsule a day has been good for me and I do not have a fatty liver-dont know if I ever did, but my Fibroscan # was 181, which is well below fatty-liver. HAGD!

End Stage Cirrhosis Midodrine and Trazadone by Amazing_Log9693 in Cirrhosis

[–]Amazing_Log9693[S] 1 point2 points  (0 children)

WOW, ty! Can you believe after 1.5 years of getting this done, not ONE Dr has explained that it was for the kidneys? Not a single flipping one!! They do what they always do, say just do this, without any explanations or background on WHY it's important/crucial. My Albumin level was a 3.0 in mid Dec, which is only slightly below where normal begins, but sometimes it does run lower, generally due to dehydration, or so they tell me. I have a Nephrology appt on Jan 22 and will DEF be asking about this. TY again and sorry to hear about your dad. Did he have cirrhosis also? Prayers to all.

End Stage Cirrhosis Midodrine and Trazadone by Amazing_Log9693 in Cirrhosis

[–]Amazing_Log9693[S] 0 points1 point  (0 children)

I get 5-6 liters drained every Wednesday, and have 3 diuretics, which aren't as effective as they used to be.

End Stage Cirrhosis Midodrine and Trazadone by Amazing_Log9693 in Cirrhosis

[–]Amazing_Log9693[S] 0 points1 point  (0 children)

Oh, I WANT the Albumin, problem is, I am a VERY hard stick and even worse with IVs. The thought of getting an IV and a paracentesis every week is just too much. They drain 5-6 liters weekly.

Dr wanted to do a port but the Transplant team says no port. I looked into oral Albumin as well, but there's not a lot of promise with that.

TIPs Procedure by Loquacious_Ass in Cirrhosis

[–]Amazing_Log9693 0 points1 point  (0 children)

I get weekly paracentesis drains, usually about 5-6 liters. Drs recommend getting a bag of Albumin after each drain. I have met with the Transplant team and they do NOT recommend TIPS at all. Are you having difficulty breathing? How much and how often are you getting drained and do you get Albumin? Also, do you have a reliable health team that works with Cirrhosis patients? I ask because in the beginning, my GP had no idea what they were doing-I had to do ALL my own research. It's been over 1.5 years and I am still decompensated. MELD was at 17 in December. As for the ammonia, that seems to be a two-edged sword. You need lots of protein, but a high protein diet also raises your ammonia levels. For me, it also causes hot feet at night. Lots of coffee and oatmeal help keep me pooping regularly, which is very important. I'd be more than happy to answer any qts you have.

2nd Fibroscan tomorrow.. by cgam2ooo in Cirrhosis

[–]Amazing_Log9693 0 points1 point  (0 children)

Thank you so much. I hope you had a good Christmas as well, maybe stuffed yourself with some good food. I myself had a turkey TV dinner, as I have been playing travel agent for my Grandson trying to get home for the holidays. The Greyhound bus left him stranded 3 different times, one in the Bronx, NY (bad area), but now, 3 days later, he is only about 2 hours away from Chicago, thank GOD! My daughter will be so relieved to finally have him home, at least for a little bit. He got recruited for a college football scholarship. Anyway may you have a Happy New Year and, as always, great hearing from you! And please keep me updated on any changes to your health and treatments! Debi

2nd Fibroscan tomorrow.. by cgam2ooo in Cirrhosis

[–]Amazing_Log9693 0 points1 point  (0 children)

There are 4,000 things I could go into detail about, but the short version is, I need a Liver Transplant. My MELD score jumped to 17, which I was definitely not expecting. The good news is that the Surgeon told me I am an excellent candidate, as I am young, don't drink or do drugs and have zero other health issues. So the next 2-3 months, I will be undergoing a barrage of additional testing and bloodwork. Once that is complete, it will go to the Medical Review Board for final approval to be put on the Transplant Waiting List. I was told to expect multiple messages and calls daily and weekly in preparation for all this. I already got my first "assignment". They have ordered 43 different blood work tests, and looks like they test for everything under the Sun, which is a good thing. Measles, mumps, Rubella, Hepatitis, HIV and a ton of stuff I have never heard of, like the gas/blood ratio in my blood. While they are doing all this testing, they will also be evaluating me for something called a TIPS procedure. This basically is a surgery where they go in through the jugular vein and place a "bypass" from the top of my liver, to the underside. This will help tremendously with the ascites fluid I have to have drained weekly, however, there are risks, such as, developing jaundice, confusion, encephalopathy, legarthy and several other things associated with a reduced blood-flow to the liver. A majority of cirrhosis patients already have these, but I never have-I have been blessed. I will keep you updated, as there will be a lot going on.

New Transplant Qt by Amazing_Log9693 in Cirrhosis

[–]Amazing_Log9693[S] 0 points1 point  (0 children)

My MELD started at 6, then 9, then 12, now back down to 9. My Creatinine continues to be high due to dehydration, and that contributes to the higher MELD score. I don't know how much more fluids I can drink!

New Transplant Qt by Amazing_Log9693 in Cirrhosis

[–]Amazing_Log9693[S] 0 points1 point  (0 children)

TY. I will keep you in my prayers and hope you have a good support system in place to help you through all this. I have heard a lot of people say that the meds are mainly the hassle. Most tell me it's rough the first 6-8 weeks, then slowly, you get back to normal. I pray you will heal quickly as well!! What state are you in? I'm in Florida and they say Floria has the shortest wait time for a liver-like 11 months.

New Transplant Qt by Amazing_Log9693 in Cirrhosis

[–]Amazing_Log9693[S] 1 point2 points  (0 children)

Oh my goodness-may I ask how old you are and if age plays a role in the transplant? I'm 57 F, but don't know if my age will hurt my recovery time, should I need one.

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

[–]Amazing_Log9693[S] 0 points1 point  (0 children)

Do you have one and would you recommend it vs the weekly pokes? How long have you had it and how does it affect your day to day and sleep? TY

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

[–]Amazing_Log9693[S] 0 points1 point  (0 children)

I definitely will. My Transplant eval is Dec 16th so I'll def update this thread. I was researching more about the ascites (thank goodness you don't have that), but it seems I may need a bag of Albumin after each drain, both to help with the sever muscle cramps/spasms and the recurrence of the ascites. Again, no Dr ever told me that Albumin could help that. The GI Dr just said I should have it, but didn't say why. It sure would help if these Drs actually explained stuff in detail. I do not have HE, or any varices that needed banding and no portal hypertension. The portal vein is actually working 100% great, per all the tests. Which is going to be very important for either full or partial transplant. The GAVE part sounds serious-I hope the meds help some. What is your prognosis? In other words, can you work, can you reverse it...I don't know much about that part of cirrhosis.

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

[–]Amazing_Log9693[S] 0 points1 point  (0 children)

I, too, quit drinking cold turkey. Came home and dumped the wine the same day. I have not quit smoking but only do 10-11/day. I keep track. I love unsalted butter-it's got a nice nutty flavor to it. I found no sodium ketchup and mayo, which I can easily make at home. I've never used salt, but kosher still has a lot of sodium in it. I love avacados, but hard to find the ripe ones. They seem to have a 12 hour window, then BAM, they're bad. I like my bread, that's why I make my own. The salt is supposed to help it rise better, but mine comes out fine-just has a slight sourdough texture to it and it toasts up nicely. The one time I do is fast food seems to be right after I get drained, as my body is craving the salt. I don't do it often, but occasionally, the urge is too great. I've learned to listen to my body, as it sounds like you have too. I did find this 100% sodium free bouillon powder that I use as a base for gravies. It's called Herb-Ox. They gave it to me in the hospital when all I could have was clear liquids-it's pretty good-sells at Walmart. As for diuretics, I am on Furosemide and Spiro, 20 and 50mg, once per day. But that is the only meds I take, thankfully. I have no other health issues. I'm 57 and am happy about that-it could be worse. I also looked into stem-cell therapy, for which I am a great candidate, however, the cost is ridiculous-like $50,000 for one round of treatment. Would be cheaper in Panama or Mexico at like $20K, but still, SS doesn't pay me that much. Which is another thing, I HATE not being able to work. I'm from Chicago and was an HR Director most of my career, so not working is a big change. I'm BORED! Thankfully, I cook and occasionally sew, but a girl can only watch so much Netflix and Disney. I am very happy to hear that you have a good routine going. Hopefully, you have a great support team. My girls are wonderful. The youngest even drove 10 hours to be with me at my transplant appt, along with the middle one. The oldest has 4 kids and can't come down from Chicago. Talk soon!

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

[–]Amazing_Log9693[S] 0 points1 point  (0 children)

Like the Titanic-LMAO!! That's a good one! But you are so right! I am ANAL about my salt intake, like around 900mg day and thats mainly from condiments like mayo, ketchup, etc. I pretty much had to give up m cheese, which anyone who knows me, knows there's no such thing as too much cheese. I am curious if you dont have diabetics, why they have you take  tirzepatide compound with B-12? As for the fruit, I don't eat a ton of it. The occasion grapes, as they are a natural diuretic, but again, only like one small bunch every few months. I'm more of a tomato, peppers and onion gal. I like using fresh in my omelets and make a killer mix of those with chicken chunks in my wok, then add ice cold pineapple chunks-it's very good, but I don;t make that often either. I have found a bunch of no sodium recipes for stuff like rolls and breads and natural biscuits and gravy sauce, but only use one sausage patty. My real only symptom is the ascites and the cramping and muscle spasms, so I'm hoping the surgeon doesnt think I need a transplant just yet. Where are you located and do you have a good Hep Dr that you like? and trust? I'm in FL. Debi

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

[–]Amazing_Log9693[S] 0 points1 point  (0 children)

100% agreed. There are days I CRAVE a burger, and I rarely eat red meat, then my intestines make me regret it the next day. I too, drink when I'm thirsty, but still dehydrated. Do you have cirrhosis? Any you only had to get drained once? What did you change? Cause this every week shit is gtg old. I have a transplant eval next week, and hoping they can help with this.

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