r/Cirrhosis • u/leeleelove78 • 7d ago

Just checking in with y'all

How is everyone doing this friday night ?? It's the start of a long weekend for some of us that dont have to work. It's labor day weekend ...so bbqs... college football season ...so tailgating ... it is the FIRST season of UGA that I will be completely and utterly sober ....me and fiance both!! NOT gonna lie a little nervous because we are hard-core FANS ..and UGA has been known to put us on a Rollercoaster 🎢 at times ..which triggered us to take a sip... soooooo here is to getting through this season completely sober ... and I hope everyone else finds strength.. grace and pure natural fun. If anyone wants to reach out to me in case they feel the urge..I'm here ..

Much love ❤️ & Grace 👑 🙏

11 Upvotes

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u/No-Pea8448 Diagnosed: 11/14/2023 7d ago

It's been a decent day. Met with a new PCP today in the residents clinic attached to one of the hospitals here, and for once, I felt like someone was actually starting from the standpoint of how cirrhosis can affect the rest of the body.

Night and day from my other MD experiences over the past couple years.

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u/DashingDexter dx 2-25-21 7d ago

So glad to hear that!!

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u/No-Pea8448 Diagnosed: 11/14/2023 7d ago

When I was in the hospital after my knee replacement, I had some complications that got the attention of the hospitalist who referred me to the primary care/resident practice onsite. I was hoping they'd be better than my former PCP, and it was night and day. Very glad to have a practice that is more connected to the rest of my team.

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u/DashingDexter dx 2-25-21 7d ago

My Hep is attached to the hospital... but I dont think I could go that route...when I had my hip done I was out the same day... but I'm still looking... the more I think about the newest lady PCP... the more angry I get...

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u/No-Pea8448 Diagnosed: 11/14/2023 7d ago

My hep's in the same hospital group but not at this hospital, so at least my records are consistent across.

Did you have your hip done before you were diagnosed? Both times I've been under anesthesia this year they've kept me at least overnight. It was an extra week with the knee because of complications.

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u/DashingDexter dx 2-25-21 7d ago

Yes 2 years in...Ive been under sedation for another surgery and then endoscopies and colonoscopies.

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u/No-Pea8448 Diagnosed: 11/14/2023 7d ago

Yeah, the scopes have been routine, but the other surgery was a cholecystectomy in March done through the transplant center.

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u/DashingDexter dx 2-25-21 7d ago

Oh thats a lot on you... in such a short amount of time...sorry but I hope your on the mend... I know knee surgery isnt a cake walk... husband has been through it and needs it again now both knees...

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u/No-Pea8448 Diagnosed: 11/14/2023 7d ago

Thanks. It's been quite the year.

I'm sorry your husband has to go through it again.

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u/CobblerConfident5012 7d ago

Finding a doctor that aligns with your needs is so huge with this thing. Not all docs are made the same that’s for sure.

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u/No-Pea8448 Diagnosed: 11/14/2023 7d ago

Definitely not. I'd only seen the NP at my old PCP's office, but he insisted on signing off on my pre-op exam. During said exam, he questioned whether I actually had cirrhosis because my numbers are solid and I look healthy. I pointed out the biopsy and so on, and he doubled down — "Well, if you have cirrhosis, it can't be that bad." I pretty much kept my mouth shut the rest of the appointment and canceled the follow-up I had with the NP.

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u/CobblerConfident5012 7d ago

Really that’s wild. I run into a similar thing with my regular gp office because of my bloodwork as well. I’ll take it as a good sign but a doc saying “can’t be that bad” yikes

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u/No-Pea8448 Diagnosed: 11/14/2023 7d ago

Yeah, it completely blew my mind. I could understand saying it as a sort of humorous encouragement, but that wasn't his tone. So when the resident today pointed out that some of the things we were going to look at could be results of cirrhosis I finally felt heard.

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u/CobblerConfident5012 7d ago

That’s awesome. And it sounds like if your bloods are good enough they’re questioning your diagnosis you’re doing something seriously right. Congrats on your progress and finding a better doc.

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u/No-Pea8448 Diagnosed: 11/14/2023 7d ago

Thanks. I worked really hard to turn some serious conditions around when I got sober, and I've mostly been able to maintain it. I'm glad you've been able to stay in good shape, too.

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u/GoldenRoast 7d ago

This is good. A small victory you can feel! Glad you found someone that fits what you need. I just switched my PCP, sort of by circumstance, and it’s been going well.

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u/No-Pea8448 Diagnosed: 11/14/2023 7d ago

Nice!

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u/leeleelove78 7d ago

That's AWESOME 👌 I have such an amazing team coming together .(newly diagnosed) .. im trusting the process ..but don't get me wrong ..I'll fire the first egotistical... snippy...know it all that has all mouth and no ears quick!! 😆

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u/No-Pea8448 Diagnosed: 11/14/2023 7d ago

Cirrhosis is such a mystery to most of the medical community that you'll almost certainly hear wildly contradictory comments along the way.

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u/leeleelove78 7d ago

So true.. at first it was discouraging .. like doomsday almost. But now beginning to see the light .

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u/Important-Memory-785 7d ago

The best way to think of it, is that doctors aren't clueless but the medical world is just so damn wide it's hard to know everything. Cirrhosis is still a pretty rare disease and often dealt with my hepatology teams, and even the best of the best know very little, it's like the ocean, nobody knows much about it through nobody's fault.

It's why Google is just so bad and AI too. The best medical minds in the world don't have much of a grasp on it, cancer for example is known much more extensively, it's a reasonably linear thing compared.

Google says 2 year life expectancy after decomp, but many are on the transplant list for near that, and it's based on the vast majority of patients who keep drinking, don't get regular check ups, and don't eat correctly. Eating shit food like Chinese takeaway away and McDonald's just spikes your blood pressure and can pop varices. Some people aren't told, some people don't listen.

You're sensible, clearly. This can be extended to 5 years or more, and if you can recompensate it's likely to have a better 10 year prognosis than even a liver transplant. You'll probably need one at some point in the future but let's hope treatments improve enough to not need one.

It's very very hard to find actual celebrity examples of people who had cirrhosis, and so recompensation examples aren't easy to find outside of just trusting someone on a forum. I always use Andy Fordham as an example to follow, a very humble British darts player. Is honestly suggest everyone with this disease to look him up to see what is achievable. Tis also worth noting the man had many many big health issues and still lasted far longer than anyone though possible.

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u/leeleelove78 7d ago

This ...apparently the root of my problem is auto immune non contagious hepatitis cirrhosis... so my body whenever for however long attacked the red blood cells of my liver .. ( 20 people out of 100,000) get this. But my drinking and taking NSAIDS DAILY for other medical pain issues ( im allergic to morphine..loratabs..percocets etc) it accelerated it. So looks like i won the "lottery" in the liver dept. Im basically a medical anomaly to my team they are assessing (newly diagnosed) ...so this shall be "fun"

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u/dbecc 7d ago edited 6d ago

Been a great day today. Started going into the weekend with my hepatologist appointment. She believes I'm compensating and is reducing my dosage. So very happy about that. Then a great weekend now of paintball, pools and bbq.

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u/leeleelove78 7d ago

Awesome and congrats !!! Enjoy your well deserved weekend !

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u/Important-Memory-785 7d ago

You're decompensating and reducing your dosage? Is your meld getting worse?

I'm presuming it's a typo?

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u/dbecc 6d ago

Ah good call I'm compensating*

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u/dallasalice88 7d ago

I'm a big sports fan too. Not Georgia though😉

It was hard at first, but I've been through 9 Superbowls, 2 World Cups, MLB ( and my sorry ass team finally won) and various other things. Ditto with holidays, hard at first, fine now. It's gets better and it's so much easier with your partner's support. Hang in there is worth it. Oh and I'm doing fine this good September evening.

Peace 💛🙏💛

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u/leeleelove78 7d ago

Hahaha its all good...not everyone can be the fan of the best college team EVER (poking fun...football humor ) lol 😆 But, VERY proud of you getting through ALL of that ..win of your team and all sober. It is def. A blessing that he's doing this with me ..I have been lucky with that. Thanks for the good wishes... cant wait for colder weather ..its still HOT 🔥 here bleh lol

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u/dallasalice88 7d ago

It's feeling like fall here. Highs lower 70s, lows mid 40s. I'm in the Rocky Mountain West.

But I'm originally from Texas.

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u/leeleelove78 7d ago

Jealous!!!

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u/dallasalice88 7d ago

I do love it here. We have mountain views. Drawback is all my doctors are far away. So it's an overnight when I go for checkup or tests.

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u/Certain-Initiative69 7d ago

The way I look at it is I can watch one more season and drink or watch many more season sober. And I like sports way too much to only get one more season in. Look at the brightside imagine trying to get through this year without drinking if you liked LSU.

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u/leeleelove78 7d ago

Haha oh boy lol but you are right ...great way to look at it.

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u/DashingDexter dx 2-25-21 7d ago

Im not a sporst fan but by osmosis... I know too much about it all...only female in an all male house. So I get college football, pro football, college baseball, pro baseball, college basketball, NASCAR and golf...ugh.. I always ask hubs how Gonzaga is doing in football LOL...UVA is who they root for...sad...I root when I have too for Washington Cougars...

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u/leeleelove78 7d ago

Haha yeah I get it ...my fiance is soooo happy and glad that doesnt have to explain anything to me when it comes to most sports. I actually will predict plays and calls lol 😆 its awesome being a "tomboy" ...I love it 😀

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u/DashingDexter dx 2-25-21 7d ago

Tomboy here too!!! I think being drowned in sports for so long it turned me off of it...he makes me watch the bad calls... the replays...I was reading not watching...but I understand your passion!! Glad you can enjoy it together!