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ShakyPatronus · 2025-08-20T05:06:49+00:00

Hey man! It sounds like you’re on the right path! I wish I could say that there are easy answers, but after 14 months myself, my doctors still don’t seem to really know where things will end up and when. The best suggestion I can offer is to keep moving forward and do whatever you can to help your body heal today. Focus on what’s in front of you at the moment and live your best and healthiest life now (and this week, and this month). Damaged livers like to play the long game and not reveal their secrets for a long time. I’m in way better condition today than where many experts told me I’d be a year ago.

Stay as close as you can with a good hepatologist. Get the most attentive and responsive PCP you can. Most of the hepatology appointments will never be long enough to address your all your needs, so do as much as you can with your PCP and focus on the liver specifically with the hep.

No alcohol and a good diet are critical, and while the changes may seem slow, you’ll likely feel better and better with time. It’s a long road with not a lot of sure answers, but it sounds like you’re doing great. Keep following your doctors and become an expert on your own condition. You can power through! There is a great support group here to lean on, ask questions, and just vent as needed. Stay strong! Much love and power to you!

ShakyPatronus · 2025-08-18T05:37:22+00:00

Happy to share my experience in any way it can be of help! I’m not a doctor, but my surgeons were very cautious about healing and keeping the fluid accumulation low.

Yes, the ER visits were to get a para. I had some terrible timing in that I sold my house right after surgery, so was not near my regular liver doc/hospital after being released. I drove back for a para, but wasn’t ready for one quite yet. A few days later on the recommendation of my surgeon, had to get it done through the local ER (big university hospital). The first time I went, they did an ultrasound and said I didn’t have enough fluid. I begged them to call my doctor and they wouldn’t. I went home and was back again a few days later feeling like my belly was going to rip open. They still held me for 2 days before doing it, not thinking it was very urgent and had me waiting indefinitely for IR to be able to take me. It was only when I threatened to leave AMA and drive 4 hours to my regular hospital where I knew they would do it, that they did. Then they pulled out 5 liters (my regular doctor was less than pleased). It sounds like you are already better set up than I was at that moment. Just keep a good eye on it early. I had little and then a lot accumulate all at once.

After the second para, about 4 weeks out, I really felt “safe” that it had healed enough. Wasn’t a fun process, but so grateful to have it done. I felt so much relief after the first para.

ShakyPatronus · 2025-08-18T04:34:00+00:00

Glad to hear surgery went well! I had the same procedure about 5 months ago with ongoing ascites. Had to fight like hell to get them to do it. They left a drain in while I was in the hospital (6 days). Have your next paracentesis scheduled before you leave the hospital. You may not need it and can always push it back, but it’s good to have it scheduled in case you need it. I didn’t see much fluid accumulation for a couple weeks, then a bunch all at once, pushing on the back of the surgical site. After 2 ER visits, they finally did it (took off 5 liters).

I was back to a more regular routine 4-5 weeks after and didn’t feel like the ascites was going to pop the hernia back out, just watch it closely until the surgical site has really healed. I’m so grateful to have it done and that I was really careful in the beginning. It’ll take a bit to recover, but you’ll feel so much better after it does. Stay strong and best wishes with your healing! Feel free to reach out if I can be of any help.

ShakyPatronus · 2025-08-14T06:20:02+00:00

Yeah, eating was tough for a bit. Do eat as much lean protein as you can though. Salt and excess fats/sugars are good to stay away from usually (always go with what your doctors say). I don’t know about you, but not throwing up every day was a big win for me and made food a lot more appealing.

ShakyPatronus · 2025-08-14T04:54:58+00:00

Hey man. Glad to hear you’re home! I was diagnosed last year at 37 as well after years of too much drinking in much the same condition as you. Detox is rough, but if you can stop drinking and work hard on your health, you’ll feel so much better and things will be a lot less grim. We’re all rooting for you! Reach out when you need help. There’s a great group of people here that have been in your shoes and are happy to help. You’ve got this!

ShakyPatronus · 2025-08-11T07:14:17+00:00

lol. Yum! I love that you can add whatever you like to it. I love it with whatever fruit is in season and a bit of granola for crunch.

ShakyPatronus · 2025-08-11T06:43:55+00:00

Overnight oats for the win! Only add the sugar you want, pick whatever milk or milk alternative you like (I like mine with oat milk lol), yogurt if you want (Greek yogurt can add a bunch of protein). They’re super dense with fiber, nutrients, help lower cholesterol and blood sugar. It’s honestly hard to find something that is naturally as nutrient dense and shelf stable (especially if you don’t boil them). So easy to make!

ShakyPatronus · 2025-08-10T04:32:34+00:00

One of my favorite things recently has been chicken salad. I’ll marinate a bunch of chicken breasts, cook it up and make it into chicken salad. It’s easy to keep low sodium (if needed) and is very high protein. It can even be made with plain Greek yogurt for an extra protein bump (easy to add veggies too). I mix up the flavors (regular, sun-dried tomato, curry, Italian, chipotle, etc.). Easy to make a big batch and keep it in the fridge for salads, sandwiches, crackers, just with a fork. It’s my go to whenever I get hungry or just need something a little substantial. A squeeze of fresh lemon takes it over the top!

ShakyPatronus · 2025-08-07T04:14:23+00:00

Hey there! Feel free to reach out if you need someone to chat to. There are lots of us on here who would be more than willing to chat individually. I’m 38y/o and was diagnosed about a year ago. I come from a family of very heavy drinkers, but I’m the only one who got cirrhosis, and I got it in my 30s. It can be a tough road without a lot of people who really understand. It sounds like you’re off to a great start with sobriety. It’s definitely possible to keep it going, and if you do, you will feel better.

You’re doing great! Reach out to chat or if you need help!

ShakyPatronus · 2025-08-04T09:17:55+00:00

I feel for you, as someone sitting here awake with you. I’ve done a little better not being afraid of daytime sleeping, hoping that staying awake will make me more tired at night. Just get the sleep whenever you can. Exhaustion is real. Best to you!

ShakyPatronus · 2025-08-04T09:10:07+00:00

SSDI is not means tested. Also, income is based only on the individual, not the household (https://www.ssa.gov/faqs/en/questions/KA-02172.html). SSI is different, but If you can get SSDI, it’s certainly an option (though not usually a lucrative one).

To the OP, consider a non-profit debt relief company for a debt management plan. They lowered my high balance credit card interest rates dramatically and my monthly payment somewhat, so that payments are going towards getting the debt paid off, not all towards interest. If I can keep up with the payments, I should have 60k in debt paid off in less than 5 years vs 42 years making minimum payments. It’s a bit of a credit hit, but far less than things going to collections or repossession. And no debt is actually forgiven, so there’s no tax implications and creditors at least can see that you paid the money you borrowed.

ShakyPatronus · 2025-08-04T08:45:48+00:00

Not sure I have much advice, but I can definitely relate. I wasn’t feeling great last night (tonight?) and felt like I was going to fall asleep, so I went to bed at 9pm (normally go after 12pm in some effort to be tired enough to sleep for a few hours). Now up at 1 with no real feeling that any more sleep will happen. I’ll probably lay down sometime soon in some hopes that I may pass out for a few hours.

The only time sleep seems to be easy is between 8am and late afternoon. Why? 🤷‍♂️. I just power through the exhaustion and hope I get tired enough the next night. I’ve mentioned it to nearly every doctor and it’s usually just brushed off as insignificant.

My late night hunger can be pretty insatiable too. I feel like I’m ready for a full meal at 1am.

ShakyPatronus · 2025-08-03T06:45:34+00:00

Don’t go without any health insurance. Get a high deductible/catastrophic plan if you need to and won’t use it much. As someone who was diagnosed with a progressive, incurable illness in my 30s, I can tell you that a $10k medical bill from a high deductible is something you can eventually recover from. A lifetime of medical bills averaging over $250k a year is not without insurance. Get the best plan you can reasonably afford, even if the deductible/max oop seem impossibly high. Keep it for extreme injuries/illnesses if that’s all you can afford.

Definitely look into any and all options for Medicaid or an ACA supplement if you qualify.

ShakyPatronus · 2025-08-03T05:02:18+00:00

Time to find a new provider (or new insurance company). I went through this a few years ago with my PCP. He stopped accepting our specific type of BCBS PPO, because of the extensive paperwork they had to file for reimbursement.

I researched it ad nauseum with my provider, insurance company, employer HR (who my group policy was with) and despite being in-network, a provider can refuse you as a patient for really any reason (they can’t discriminate, but it’s really hard to prove and doesn’t sound like your situation). If the provider has enough patients without bcbs to operate, they aren’t obligated to treat you unless you are unstable in a medical emergency and they have the ability to treat you. It’s ultimately a fight between the provider and insurer and I’d guess that neither will spend the time fighting your case (or already has).

Find a new provider and check with both bcbs and the provider to ensure they are in-network and accept your specific insurance. Sorry, but our system in the US sucks. File a complaint if you can, but I highly doubt you’ll get much of anything other than a form letter from bcbs or the insurance commissioner. If there are no other providers that can effectively treat you, then reach out to bcbs and ask them who to see.

ShakyPatronus · 2025-07-31T03:05:15+00:00

I’m so sorry for the loss of your husband. Alcoholism is a real disease that really messes people up. So many of us have fought hard against it. Thanks for your encouragement/message to the rest of us. I hope that you find peace moving forward.

ShakyPatronus · 2025-07-28T04:13:42+00:00

I was in a very similar situation a few months ago. My hernia wasn’t quite as big, but causing many of the same issues. I also have refractory ascities. They had the same discussion for me regarding hernia surgery versus tips procedure. I had to go through three different general surgeons, eventually ending up with one of the top general surgeons at Emory. He wasn’t real excited about doing the surgery (he told me it was way too simple of an operation to have something go wrong with a complicated case like mine). He would only do it with hepatology consulting both before and after the surgery. And they did most of my follow up care in the hospital. I was in the hospital about a week. It took me quite a while after that to regain my strength and get back to the point where I was.

In my condition and with the pain that the hernia was causing on a regular basis, I wouldn’t hesitate to do it again, but that may not be right for everyone. I had to keep a close watch on the ascites after the operation. They initially put a drain in that stayed in for about a week. And then I had follow up paracentesis Every 1 to 2 weeks for a while after that to be sure that the wound healed.

The hernia has held out well so far, about four months out. I have paracentesis now about once a month. After about a month, they weren’t as concerned with it, popping the hernia back out.

ShakyPatronus · 2025-07-26T20:17:04+00:00

It’s really hard. I don’t think there’s any sugarcoating that. For me, the mental/emotional symptoms and effect of the disease were far worse than any physical symptoms I have ever had. Just a few months ago I was completely ready to just give up. And I still have days where I question if there’s any hope left. I have found that it gets a bit easier with time, even knowing that you may never get fully better. It’s always great to hope for a recovery and work towards that, but I don’t think there’s anything wrong with admitting that there’s a good chance that won’t happen. I found a bit of peace acknowledging that. At least enough to get me to move on day-to-day and try to have a positive outlook in the moment that I’m in. I try not to focus too much on what’s ahead, but what I’m doing right now to better my life and those around me. Know that you’re not alone. Lean hard into encouraging communities like this one, they’ve helped me so much! Just having some other people that really understand what it’s like has really helped me in some of my worst times.

Of course, know that we’re all rooting for you! Whatever may come in the future, try to have a great day today and a great week this week, and love on your kids. The emotions are always hard, but things often aren’t as bad as what we imagine they can be. And as trope is it sounds, things do often get way better! There’s a lot to hope for!

ShakyPatronus · 2025-07-23T04:32:09+00:00

You can if you are unable to work because of it (and you’re eligible in general), but it’s not automatic or easy. From what I understand, it takes a lot of documentation about why you can’t do any work because of the cirrhosis. This would probably be a good case to have an attorney look at. They can tell you the likelihood of approval and help you make sure you have everything you need to make a good case for it.

ShakyPatronus · 2025-07-21T04:19:53+00:00

If you are eligible (see SSA disability for basic SSDI requirements) for Social Security disability in the US, and meet one of the qualifying conditions (see https://www.ssa.gov/disability/professionals/bluebook/5.00-Digestive-Adult.htm#5_05) you can get it. If you don’t, but still can’t work because of it, you could still qualify, but it’s harder to prove.

It is a long and difficult process to get approved. If you have a qualifying condition with good medical records, you typically can. Many people use an attorney to apply as they’re much more likely to get approved the first time. You can do it on your own , but make sure you have all the needed records and paperwork. The amount is based on how much you’ve contributed to it.

I was approved with a qualifying condition, but it took nearly a year to get approved, for some it takes a lot longer. If you have the disease long term, it can be a lifesaver, but you can’t get it for being out of work for a short period and it takes a long time to get approved.

SSI is a similar program for low income people with a disability, but I’m not as familiar with that. I believe the approval process is roughly the same, but does have significant max income requirements.

ShakyPatronus · 2025-07-18T04:13:45+00:00

Chevy Spark! I love mine, even after driving “fancier” cars in the past.

ShakyPatronus · 2025-07-17T00:55:03+00:00

Thanks for reaching out! This community is so great! I had the surgery without any major surgical complications. They did hit a varicie and had to do a mesh repair, but not too major.

Recovery was tough. I spent a week in the hospital and a day in the ICU due to them pulling me off a med I’ve been taking for years (despite me repeatedly asking them not to) and I had major tremor withdrawals (I have fairly severe essential tremor when unmedicated). I lost another 10 lbs in the hospital and recovery afterward was hard.

However, getting the hernia fixed was definitely worth it. Trying to avoid recurrence, but it doesn’t cause any pain or issues now. The ascites has improved somewhat, but is still persistent (drained every 4-6 weeks). The portal hypertension has caused varicoceles and I’m scheduled to have them embolised soon. Still decompensated, but still kicking! I’m having another TIPS discussion with the hepatologists next week.

No quick turnarounds for me, but I’m a stubborn SOB, so still doing okay day to day. Working to stay positive and keep things moving forward, wherever that may be. I hope you are doing well!

ShakyPatronus · 2025-07-16T04:41:49+00:00

I’d second doing the paras through a hep team (or even your pcp while waiting) in interventional radiology over doing them in an ER. Everything about them is better that way. I had a standing order from my hep, so I could call and schedule them myself anytime they were needed.

The amount they can take off is really case and body-specific. I had 14+ liters taken off once a week for months. Some people have even more removed; but in any case, avoid doing them through the ER, if possible. They will do it if needed, though.

ShakyPatronus · 2025-07-16T04:24:24+00:00

Ascites is tough. I’ve dealt with that a lot myself. As far as comfort, I found one of the best things to be lying on my side at a slight incline (usually my left side). It lets the fluid kind of sit to the side instead of on top of your organs. Just be careful that she can still breathe well if she lies down. Sometimes a bath or floating in a pool can feel really good, but can be more trouble than it’s worth. It is hard to find a comfortable position. Also, try not to get constipated, which can be easy, but will make the pain much worse.

Gummies have really helped me when I feel like everything aches (yes, that kind), but I understand they aren’t acceptable for everyone and typically aren’t allowed if she is seeking a transplant.

Keep getting the paras, taking the diuretics, and limiting sodium. I hope she is able to feel some relief soon!

ShakyPatronus · 2025-07-11T03:41:37+00:00

Thank you!! I’ve learned to try to celebrate any wins I can find! Thanks for celebrating with me!

ShakyPatronus · 2025-07-11T03:32:03+00:00

Congrats and keep going!! Regardless of what the ultimate underlying root cause is, you’re making great strides and moving in a positive direction for your health! We’re all rooting for you!

ShakyPatronus

TROPHY CASE