New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

shad0w69
New Member


Date Joined Oct 2017
Total Posts : 5
   Posted 10/21/2017 9:08 PM (GMT -7)   
Six years ago found a 30 + year case of HCV w/ stage 2 cirrhosis stage 4 swelling. Ribs busted, face rashes gastric umbilical hernia blew out six times, etc. On this forum people warned about not getting those fixed and I wish that I had taken that advice.

Partied my ass off until 2 years ago, took the 12 week Harvoni and was cleared of HCV. I still drink beer daily when I can.

Question: My stages are rapidly changing from a 3 to near 4, everything but the coma and yellow skin; skin is grey n splotchy and the splitting face rash is back. Kidneys showed chronic kidney disease last May, plus I have two tumors within my urinary tract that i’ve opted to not treat (docs didn’t ask if I had my CHF, Cirrhosis, even with massively elevated ammonia levels, etc).

BP always super low until I fell extremely ill a week ago. Can’t see, tinnitus, feeling like am gonna pass out, arms go numb, extreme liver, kidney, bladder and chest pain. Confusion to the point they shoved me in a psych ward last month, personality and mood changes to the hilt, never mentioned my Cirrhosis cause I rarely think about it. They couldn’t figure out what my issue was, gee nobody asked if I had liver/kidney/heart impairments (I’m sure my ammonia was skyrocketed again)...

Finally looked up the SX of the aforementioned, never been this sick. Turned out Google is like check your BP. It’s 188/114 and keeps rising. Sweating for over three months but profusely this past week. Arms turning splotchy, etc.

When I read about some of the horrifying procedures the docs use to control some of those big veins from bleeding, I realized that there’s no way I’ll subject myself to that unless not by choice (losing consciousness).

Is this ESLD? Will my BP ever go back down without medical attention? Does anyone have any suggestions regarding to treat or better off without (I’m no liver transplant candidate obviously)?

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1097
   Posted 10/22/2017 10:16 AM (GMT -7)   
hi shadow and welcome,
Do you want to go on living??? Do you want a transplant??? drinking beer?? serious heart disease???
Your only option is to follow through with all those procedures, you are avoiding.

You say, you wish you had taken the advice of this forum. Take it now.. get the help, without questioning or fearing the procedures that may save your life.

My brother has esld and cancer of the liver. He avoided help, because the thought of getting those procedures, and going through pain from surgery, made him hesitate. He wants help now, but the cancer has worsened to where transplant is no longer an option. He had hcv, and drank.. he quit drinking for a year and followed all orders. he was approved with 6 months of documented sobriety, and showed willingness to live, to pass the mental evaluation.

get your heart and liver evaluated now.

stop all drinking now. you just might improve.

I do understand. I also had cirrhosis from HCV and alcohol..Do let me know what you decde, and good luck

shad0w69
New Member


Date Joined Oct 2017
Total Posts : 5
   Posted 10/22/2017 11:17 AM (GMT -7)   
Ah ok this sudden jump in BP and blindness is exactly what I finally got around to looking up on my Cirrhosis. Thank you for your reply, I took a moment to pray for you and your brother while reading your plight. Life definitely is good as is. Thanks for sharing, have a great Sunday!

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4800
   Posted 10/22/2017 1:05 PM (GMT -7)   
my partner wanted to die "happy"....by that he meant lots of booze.

then in fall of 2010 he was hospitalized with all sorts of things...cirrhosis, kidneys failing, heart disease, muscle wasting, hepatic encephalopathy (the crazies), hep C. he wasn't having any more fun, and the doc gave him 2 or 3 months to live

or, he could dry out, stay sober, qualify for transplant, take meds for his hep c, tune up his heart, keep an eye on those kidneys and treat them gently.

he has not complained once about the surgeries, he has a new sober life, and it's not that bad. he spends more time on the golf course and less in the bottle...and we have had him with us for 6+ extra years...hoping for a few more.

maybe you have done all you need to do on this earth, and it is your time....i'll say a prayer for you that it is smooth sailing. let us know if you would prefer help.

mamalama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

shad0w69
New Member


Date Joined Oct 2017
Total Posts : 5
   Posted 10/22/2017 3:18 PM (GMT -7)   
eh i’ll take it easy on the booze, gotta good friend going to go partake in life with, don’t wanna be drunk around him, got some hobbies in mind to initiate. will make sure he is aware of my wishes. thanks mamalama i remember you now from before, be well!

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4800
   Posted 10/22/2017 3:29 PM (GMT -7)   
thx...i vote for taking care of yourself, if i get a vote in this! ml
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

shad0w69
New Member


Date Joined Oct 2017
Total Posts : 5
   Posted 10/22/2017 9:11 PM (GMT -7)   
Just two more questions: (squinting) so basically i’m in what, portal hypertension plus the both kidneys on CT back in may is what now, HRS? So gee, this kinda stuff has gotta be really hard for you to see mamalama super gentle ((hugs)). for reference my first screen name here is shadowcptn. peace!

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1097
   Posted 10/23/2017 7:45 PM (GMT -7)   
I remember that name. Shadowcptn-I was treating my hep c with that 3 drug comboback in 2012.. what a god awful combo that was.
I ended up in the hospital with kidney failure, from that 3rd drug that was added. One year of pure torture. And I’m bipolar. So I was a mess. But I got thru the 48 weeks and cleared that darn virus.

Yes you have portal hypertension. You posted earlier your kidneys were struggling. If you have your labs, we can figure your meld.

Honestly, I think you should get your heart failure evaluated 1st.
It will hopefully get your B/P under control
Peace

shad0w69
New Member


Date Joined Oct 2017
Total Posts : 5
   Posted 11/8/2017 12:48 AM (GMT -7)   
ppm guy - I’ve my labs from May, what numbers are ya looking for I will post them. Yeah they finally figured out my “bipolar” is organic mood disorder from my liver. Was only going to the psych for ritilan and valium (such an addict). I do recall talking about that 3 drug regimen here, probably with you dunno. It scared me enough to wait for the Harvoni. Struggled with depression when Mom was passing so didn’t wanna take the chance of recurring depression from the Interferon. Wound up messing up my life by waiting to treat though so it wasn’t the brightest decision I’ve ever made. Hard to form words but yeah it’s cool catching up with you! Thanks for remembering me lol 😜 Sux to hear that you actually did have to go through the 3 drug regimen and dang, kidneys shut down ‘eh? Dialysis? Holy moly am so glad you made it past all of that and are still here with us. Can ya even take psych drugs anymore? Wow. Pretty sure I remember you too, peace!

Howdy mamalama! Guess what? Can’t handle these symptoms anymore so have an appointment with a Hepatologist this month. Getting really hard to think clearly anymore. Question. What do I say to this doc that I want my Cirrhosis checked? Kidneys super sore n umbilical hernia dimpling. BP going up & changing dramatically from when I’m laying down n standing up. Won’t the doctor be angry that I’ve waited? So scared to discuss Cirrhosis n all of these symptoms with anyone except here. Don’t wanna deal with any of this. Need encouragement please! Big hugs!

Post Edited (shad0w69) : 11/8/2017 1:13:00 AM (GMT-7)


ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1097
   Posted 11/8/2017 4:48 PM (GMT -7)   
Mamalama is away for family issues. She may check in.

Glad to hear your seeing a hep dr. I said we can calculate your meld. I would need your creatinine, Inr, billirubin, and sodium. Let us know how your appt goes.

My liver and kidneys calmed down after curing my hep c in 2012. My liver function is good now.

I went thru 3 psychs before I got my bipolar under control. All I take is a mood stabilizer (lamictal)and a small dose of Valium to sleep. It’s amazing what 5 to 6 hours of sleep can do.

What are you doing about your cardiac problems? Hopefully your hep dr
Will reffer you.

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4800
   Posted 11/10/2017 11:14 AM (GMT -7)   
shad0w69

ML is back, but not as active as at one time.

The combination of issues you talk about...liver, kidneys, heart...are not unusual. We see these reports all the time.

My Mike, TP six years ago has had trouble with heart and kidneys.

First, they cured his Hep C after his transplant, so thank goodness for the new meds. The old Interferon/Riba was a nightmare.

His is doing really well now, BUT, he has had an aortic valve replacement and has some stenosis in the mitral valve. He takes 3 meds for uncontrolled hypertension...a beta blocker, channel blocker and ace inhibitor, if I got that right. So, for now he is fine. No restrictions. Lots of cardio appointments however.

And BUT, he sees a nephrologist because his kidney function is TERRIBLE. He does not need dialysis at this time but he will likely be a candidate down the line.

Two meds he takes mess with his kidneys..anti-rejection meds for his new liver (prograf) and one of the heart meds (diovan). They have tried him on different anti-rejection meds and heart meds, but he has had terrible side effects on both sides of that equation, so he is back to the ones that mess with his kidneys. Thek idney doc has been funny...says that there is no liver dialysis, so liver beats kidneys (and she would put him on a transplant list for a new kidney if it came down to that as he is in pretty good health just now). And the liver doc has reduced his anti-rejection meds with no negative increase in his Liver Function Tests and some improvment of Kidney Function tests...so less is better....for now. Down the line...we shall see.

It is great we have docs who are working together on this to keep him in a good place.

And it is all possible because he made the commitment to sobriety in 2010. That was HUGE.

Good that you are getting checked out more. They can really help folks these days.

Hugs,

Mama Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, November 17, 2017 9:30 PM (GMT -7)
There are a total of 2,894,974 posts in 317,755 threads.
View Active Threads


Who's Online
This forum has 157354 registered members. Please welcome our newest member, AndyB80.
363 Guest(s), 6 Registered Member(s) are currently online.  Details
Scots, norcal200, Hoagie, Scaredy Cat, Girlie, Evanston1


About Us | Advertise | Donate
Newsletter | Privacy Policy & Disclaimer
Follow HealingWell.com on Facebook Follow HealingWell.com on Twitter Follow HealingWell.com on Pinterest
©1996-2017 HealingWell.com LLC  All Rights Reserved.