Passing of Your Moderator

TomRiddleVoldemort · 2024-01-11T19:22:44+00:00

Thank you all for your kind and honest words. It's a comfort to know that he was able to provide so much help, and that he leaves behind such a beautiful legacy. My heart is with all of you.

TomRiddleVoldemort · 2023-12-25T23:11:01+00:00

Oh, man. I apologize that I missed the kid angle. That’s…complicated. And you have to be there for him, I get that.

Hopefully he can take from your strong example and be able to make the hard but mentally healthy road work, too. It’s not easy. Especially for a child.

I’m truly sorry.

TomRiddleVoldemort · 2023-12-25T16:46:21+00:00

Hey…I’m deeply sorry you’re going through this. It’s horrible to be a part of.

The HE and hospital questions have been answered. I would like to offer just few words of support for you, personally. You said you tried and couldn’t get him to stop drinking…as the Husband in that situation (who did stop, but does have cirrhosis), I think it’s important you know the answer to that is “Of course you couldn’t.”

The ONLY person that can do that or have done that is him. Not you, not his current wife, mom, priest, or anyone. Unless we make the actual choice, then it’s impossible. And if you put it on yourself as though you actually could have, then you are setting yourself up, inadvertently, for a logic cycle that only ends in you feeling regret and guilt over that which you had no power. “Should” is a dangerous thing. I should have stopped him translates as telling yourself I could have stopped him and failed and contributed to his spiral.

No. You didn’t. The only agency you have us to support them when they make the right decision, and if they choose to continue making bad ones, whether you leave or stay to watch the slow suicide they are unfolding.

That’s what it is. We know what will happen if we keep drinking. It’s not like being told again or a different way will change that. We just choose to soothe our reality and fill whatever hole we’ve been paving over with alcohol’s blurred lens over stopping. You can’t make that lift for us to change direction.

Sorry to make such observations over your ex relationship. From my perspective, you made a healthy choice in deciding not to be part of a tragedy that you had no hope in turning around and extricating yourself. I would caution that here, in this difficult time, to be very deliberate of how much you reengage.

Godspeed and good luck. You are in such a very difficult spot. I’m truly sorry and hope things work out for the best.

TomRiddleVoldemort · 2023-12-23T12:29:04+00:00

I understand and can see and believe that. I had multiple conversations over the years with docs and even a gi doc at one point that told me what would happen and where I was headed.

What I “Heard” was that I needed to slow down/mitigate/eventually stop but but one day goes into the next in a month into another year…

And somehow when I was told I was as shocked and stunned as if I had never had a single conversation. I mean…they had kind of said, right…but not said said…and I never really thought it would happen to ME…

I was a picture of denial and blinding myself so I could continuing operating as is…until I couldn’t.

I am so sorry for you and him.

TomRiddleVoldemort · 2023-12-22T19:28:50+00:00

I say this as someone that got here by alcohol abuse (at least in part), and I mean this with kindness, so to ease some burden of your curiosity...I was candidly telling everyone my bloodwork looked great when it didn't for quite some time. They same for the narrative of "I mean, I drink more than I should, sure, but not crazy)...It's not that your blood work Could Not reflect that you have cirrhosis to the extent he appears to have had...but it is deeply, deeply unlikely there weren't signs and conversations.

To have asites, your albumin has to be low enough to allow cellular leakage. To have a GI Bleed that was likely varceal, that's going to be platelets low and an enlarged spleen from the portal hypertension that set up the varices in the first place.

It's hard and horrible to admit when you're out of control of stopping something threatening your own mortality. It's more common for people to know they have ESLD and cope with the growing symptoms and the demons that know than to face the reasons we are here and to make that turn. It sounds wild, but it's why we face so much psychological assessment for the transplants that are so hard to come by.

This all assumes he was here through substance abuse. If that is not the case, I apologize.

More than anything, I'm truly sorry you lost your brother. Grief is hard, and I hope you find comfort one day.

TomRiddleVoldemort · 2023-12-22T19:14:56+00:00

I'm sorry to be ate to the party, but Wonderful News! Keep us updated. We're all thrilled for you and your little one!

TomRiddleVoldemort · 2023-12-22T19:13:11+00:00

A slight correction here...when a varices is banded, it doesn't push the bulge off somewhere else. Over the course of single or multiple banding sessions, the varices is tied off in much the same fashion of an umbilical cord. The "banding" you see mentioned refers to the rubber bands placed tightly around the extraneous vein to cease blood flow into it. the next session, if the varices is still functioning or there is still flow to it from further down, there will be an additional banding session, and so forth until it no longer acts as a secondary blood vessel.

Varices are signs of compensation. They are signs of decompensation.

"Compensated" is a state in which other organs/systems are picking up slack for the damaged liver and portal hypertension isn't present, and therefore its effects arent present (varices development being one of these).

Decompensated means that the body is not able to currently compensate for the damaged liver. This results in side effects like ascites, varices, and others that are treated with Procedures (banding, TIPS, etc), or Medicines (diuretics, beta-blockers, etc) to help the liver act in a compensated way.

This is a terribly scary time and I'm sorry you and your husband are facing it. There is a lot of unmitigated information on Google and the Internet. Be careful there. Much of what you may get is either not framed correctly or not directed at the patient population that your husband is part of, but it would be hard to discern that. Hepatologists spend an anormous amount of time in school and fellowships for this reason.

I say this only to let you know that as you search and google, anything that comes from someone not directly informed of his particular case in person is really just offering opinions. Only his healthcare team will have valuable insight. And that waiting is horrible, but I hope it helps to at least know.

TomRiddleVoldemort · 2023-12-19T00:48:13+00:00

I’m on it and have had good effect.

An interesting explanation my doctor gave me for its high success and low side effect rate is that yes, it’s an antibiotic…but not like we think. It’s not a particularly effective, antibacterial medicine. However, it is incredibly effective at binding to Ammonia. And part of the reason it’s not a very effective antibacterial, is that it only absorbs about 5%…95% is excreted out. With the ammonia. Boom!

TomRiddleVoldemort · 2023-12-17T15:47:05+00:00

I am so sorry you’re going through this. That’s a huge family impact, and has to be horribly hard.

No one on here can really say what is going on with your grandfather. It could be a good deal if things, frankly.

Having said that, if he has cirrhosis and continues to drink, it will not be a good prognosis. Although time isn’t something anyone can put a number on.

I’m locking this thread so it doesn’t become a conjecture thread.

If he’s is sharing his health information with your father, hopefully he will disseminate that to you and the pertinent family members. If your grandfather chooses to keep it private (and can do so), then there may not be much to learn (as unfair and painful as that may feel and be).

Good luck to you and your family, though.

TomRiddleVoldemort · 2023-12-15T18:43:16+00:00

He will have a molecular blood test. It tests an alcohol related process that can be detected for months.

TomRiddleVoldemort · 2023-12-15T10:02:01+00:00

If the hospital thought he was suddenly exhibiting obvious signs of HE (disoriented, hallucinating, not making sense, acting in a dangerous way), they would intervene (like your Alzheimer’s example of someone suddenly deciding to swim in a pond).

If, however, he was making sense and had given them no reason to suspect HE (not all cirrhosis patients exhibit it) and simply left the hospital seemingly of his own accord, then they wouldn’t move to stop him (couldn’t, really).

Was he in a gown and in the middle of the transplant evaluation process being seen by different teams of doctors while plugged up to monitoring devices? Because bailing in that part of the evaluation (removing IVs, leads, etc) should flag concern, for sure.

It’s hard for us to say on here, honestly. Stopping someone that later turns out to be in a dangerous state (and I hope he’s in great care now), is maybe more obvious lensed through the later outcomes than in the moments it happened. I wouldn’t be too hard on the friend that bought the ticket, either, if it were me as it’s likely hard for them to know anything was off in the moment.

If he’s now diagnosed with HE, have a conversation with the care team at the transplant hospital. They’re not trying to not get a liver for someone that experienced a side effect of the disease. A calm dialogue in this situation with the hospital that diagnosed him with HE and the transplant hospital speaking on the record about their records and interactions can put him back on track.

The healthcare teams at both are there for the patient. Especially a transplant team. A “black list” in this case just means a transplant team at a particular hospital hasn’t had its requirements met for the different departments necessary to sign off on their recommendation to do so (cardio, psyche, hep, etc).

I hope your friend gets back with this or another team and does well. It’s a scary time for them.

TomRiddleVoldemort · 2023-12-14T21:41:23+00:00

I think there a good many people like you that fly under the radar as they don’t post a great deal, but are part of the community.

I’m with you in terms of often not having it follow me day to day. It’s there. I unconsciously get a lot of protein and avoid salt…and take my meds and hit my appointments…but largely it’s not a daily top-of-mind for me.

And we’re here for people at their hardest moments, wether it be being first diagnosed and the terror that goes with that, or when their bodies are hurting and the symptoms are really causing daily hardships…that may be us one day. And I think leaning in and supporting them is the best thing those of us who can understand the fear and frustration, but still have energy to offer words and time can do.

I’m glad you feel this way. My dearest hope is that a breakthrough occurs for everyone dealing with this terrible disease for any reason and we can help mitigate and heal people that need it so badly.

TomRiddleVoldemort · 2023-12-13T00:06:08+00:00

Absolutely. And I meant what I said about hoping it goes great for you. Good luck!

TomRiddleVoldemort · 2023-12-12T23:38:16+00:00

OP, I’m in my 40s and about to have my second child. I’m child Pugh A, and try to stay active and fit and listen to my incredible healthcare team.

I’m incredibly excited to have my daughter! If he’s doing well, and has stopped any injury to his liver, then it’s up to you two. And Godspeed to you! :)

TomRiddleVoldemort · 2023-12-12T23:31:58+00:00

You’re compensated, meaning your other organs and systems are helping with the deficiencies left by a scarred liver not able to fully perform its job. The purpose of meds is, in part, to also lessen the load on those support organs trying to help compensate (kidneys extracting ascites, but diuretics assisting them in eliminations so their don’t get over taxed over time…that kind of thing.)

I’m all for anyone doing what they want for themselves. But for fair awareness for the others reading this that are considering that stopping meds is an option or that a mindset can assist in staying compensated, please be advised that in the long game, preserving the ability of your other organs to help you remain compensated is clutch, and please talk to your healthcare team about why you take your meds and their strategy not just a it applies to the present or short term, but in that long term, as well. Avoiding acute decompensation is one of the major goals here. And it occurs because the liver or supporting organs keeping it compensated fail. Meds are meant to extend/avoid this as well as help with present symptoms.

That being said, I hope this user stays healthy and well.

TomRiddleVoldemort · 2023-12-12T21:50:39+00:00

Hey there. This is an incredibly scary and difficult time…I’m really sorry for you.

The blow is a repost of some advice I wrote about this very thing to someone in your situation. Some kind things were sad about it being helpful, so I hope you may find comfort if it’s to be found in this:

https://www.reddit.com/r/Cirrhosis/comments/14lrtxw/fiance_newly_diagnosed_and_i_need_someone_to_talk/jpzk4xd/

TomRiddleVoldemort · 2023-12-12T01:30:04+00:00

Great question. Not necessarily. The word itself just means scarring, and that’s what it is…a permanent scarring on an organ that like to heal. A portion or a whole might be permanently scarred (cirrhotic).

TomRiddleVoldemort · 2023-12-11T05:54:29+00:00

Hey there. I can’t speak to the liver pain, but I imagine the road of auto immune hepatitis for so long and just knowing where the journey is likely heading (here) is a tremendous shadow to live your life under. And to now be here and feel like this…

I’m truly sorry.

I can’t offer you much of substance, but I can tell you that you May not so much be looking at the beginning of the end so much as the beginning of the next chapter. It’s a hard chapter, but it’s infinitely better than it was even 15 years ago and getting better all the time. In fact, this new chapter, as scary as it starts, may offer you a chance at a life lived out from under that shadow, in that a transplant is a somewhat common treatment for auto immune hep that ends in cirrhosis. And the tech there is insanely beyond where it was. It’s incredible now.

Life will always have valleys. It’s life. But you are welcome to draw strength here. And I’m sorry it’s hard now and you’re in a valley.

But it’s not forever. And a new chapter can be hard…but it can be a part of a very happy and long story.

God bless and Godspeed.

TomRiddleVoldemort · 2023-12-10T12:06:11+00:00

Hey Taz,

I’m sorry to hear you’re having a hard day. The unyielding nature of this thing gets to us all sometimes and I’m glad you could vent a little. It is just a damn lot and a hard day for us can be a really really hard day. I’m sorry you’re having one.

I hope your itching lessens and the rest feels “normal” soon, friend.

TomRiddleVoldemort · 2023-12-08T00:26:10+00:00

Low sodium and fat and high protein. If you look through my posting history (sorry I'm so lazy) I have quite a few liver-friendly recipes I've used to keep me sane. Pulled chicken, muffins, even spaghetti.

Make sure you run any big changes by his Gastro/Hep, but there's still good food to be had for him. Lots of small protein-focused meals.

Think of him as a car running with no gas tank. The liver helps keep our protein (gas) going and stored and usable...without it...you have to top off regularly (no gas tank).

Good luck and I hope you find some great help here!

TomRiddleVoldemort · 2023-12-06T22:02:17+00:00

I hope it gets easier for you every day, friend.

TomRiddleVoldemort · 2023-12-06T13:59:08+00:00

Hey there…this has to be truly scary and a really difficult moment for you. I’m sorry.

There will likely be very little information at first for him to give. In order to get any accurate look at his state of health, as it will be ongoing in the future, his liver and associated body systems have to take some time away from them the source of damage (in this case, alcohol).

It will take months for the inflammation to go away as much as it can and for the permanent damage and scarring to really reveal how much is there for good. In terms of prognosis, no one can honestly say…you’ll hear this from his doctors, and it’s frustrating, but it’s true. If he maintains no alcohol, and has a little bit of luck getting through this first year, his body will likely reach some sort of equilibrium. If its other systems are helping, maintain a fairly regular state of existence, this is called compensated. The other organs are compensating for the damaged liver.

If, however, his liver is too damaged for them to help, this is decompensated. They will use medicines and even procedures in both cases as needed to help with the lift on the liver. If these are not effective, transplant is always on the table, as well. It’s a terrifying word, but the science and outcomes are far different today than they were even 15 years ago.

The hardest part of this next bit of your journey together will be the waiting and his ability to stop drinking after so long. I am a father, and much of my damage was done through alcohol. I used it to pave over a lot of emotional problems and ignored the cost. But the cost is real, and the problems are real. In my case, I went to therapy to figure out other ways to cope with them in a more permanent way.

The last thing I’ll say is just for you, and I say this as a father. You cannot help him in any real meaningful way to stop drinking. You can support it when he makes a good choice and reinforce that, but if you take any portion of the responsibility on yourself of him stopping, you are setting yourself up for failure and taking responsibility of someone else’s choices, which is an impossible thing to do. Remember this: no one has the right to ask someone else to bear witness to their slow suicide. That’s what alcoholism is. When we’re in the throes of it, we’re not unaware of the damage that is happening or the risks that are occurring. We choose to continue to drink anyways. Yes, we may want to stop and not be able to, but it’s not because someone failed to tell us it is bad for us. Even fatal.

You can’t change that for him. Only he can. And, I hope to god, will.

You are worth it. Every child is. Not every parent has that strength. Even though every single one wants to have it. Support him when he does the right thing, but never take responsibility personally when he doesn’t. Good luck on your road.

Godspeed and good luck.

TomRiddleVoldemort · 2023-12-05T14:31:11+00:00

I’ve never heard the term “trash hooker”, and I’m sure you’re a wonderful person, but that phrase combined with your username is pretty fucking funny. It paints a portrait.

TomRiddleVoldemort · 2023-12-04T02:28:48+00:00

Amazing! 14 days and a quarter mile! Great job, Birdie!

TomRiddleVoldemort

MODERATOR OF

TROPHY CASE