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Cirrhosis of the Liver Community
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Avatar universal

how to deal with the pain of end stage liver disease and liver failure

I was diagnosed in 07, 3 years after I stop drinking. I have a portal hypertension, enlarged spleen, varices and now addison's disease. I get horrible liver pain that wraps around to my back that gives me spasms. I've been hospitalized 3 * in the past 2 months. because of flora in my own G I track . sometimes the pain gets so bad I just want to leave my body. it's like I can't get away from it. anyone with any ideas on how to deal with it would be greatly appreciated. thank you
31 Responses
446474 tn?1446351282
COMMUNITY LEADER
I am sorry to hear you have ESLD.

The only doctor that can help you at this time with issues having to do with your liver is a hepatologist (a liver specialist) at a liver transplant center.
Pain is common in person with ESLD and can only be managed by a doctor that understands the exact nature and extent of your liver disease.

Since you have stopped drinking you may be eligible for a life-saving transplant at a liver transplant center. Without proper treatment your illness will only get worse over time, I'm afraid.

If you have a primary doctor or a gastroenterologist get a referral to a near-by transplant center. All person with ESLD should be cared for at a transplant center as they are the only place that has the knowledge and experience treating all of the multiple complications of ESLD. Portal hypertension, varices, ascites with infections, etc.and ESLD pain.

You should have been advised to do this when you first had the first signs of ESLD.

If you post where you are located we could recommend a transplant center near you.

Addison's disease may or may not be related to your liver disease.

Hang in there.
Hector
Avatar universal
thank you very much for your comment. I'm in southern california. I moved here in 2010 from nevada because they don't do liver transplants there. I'm a 37 year old female who just got medical insurance last year. kinda feel like im getting lost in the shuffle when it comes to doctors. have appt w/ G I Dr. in oct. I have referrals from my doctors in nevada stating decompensated liver and  liver transplantation recommended for patient. I've seen alot of doctors here in california but feel like nothing is being done to help me. I was told in january of last year by the liver specialist I have 2 maybe 3 years left with this liver, and I won't make 40 he said. Then a few months later I was approved for my ssi got new insurance and different coverage, with that I had to start the process all over again. sorry for being so long winded but I really thank you helping me.
163305 tn?1333672171
In your condition you need a hepatologist not simply a GI, and I would not wait until October with those symptoms.
If you are near San Diego, the esteemed Dr. Gish is at UCSD. I would encourage you to make an appointment.

This is a link for his information.

http://ucsd.photobooks.com/directory/profile.asp?setsize=10000&dbase=main&pict_id=2406732

If that is too far, you can take a look at this list of recommended hepatologists from our members:
http://www.medhelp.org/posts/Hepatitis-C/Who-is-your-good-doctor-/show/1715783
446474 tn?1446351282
COMMUNITY LEADER
Nothing is being done as you have to go to a transplant center near where you live in So Cal. Not a GI. They can not help you as your disease is too advanced.

You need to get listed for a transplant at the center and have a hepatologist manage your care up until transplant and the transplant center will monitor you for the rest of your life.

Where do you live? Near San Diego or LA. In San Diego Dr. Gish will help you. In LA there are a number of excellent transplant centers.

You are young so you should be able to bounce back quicker than us old folks in our 50-60s.

Cheers!
Hector
Avatar universal
Im in a small town named Hesperia,ca about 40 mins south of barstow. Thanks again.
1475202 tn?1536274577
COMMUNITY LEADER
It would be the responsibility of your general doctor to refer you to a transplant center if in fact your insurance requires a referral. I think most do. Hector an OH are right, this is something that cannot wait until October. Emphasize this to your general doctor right away. If they cannot get you in sooner then see a different doctor.

Here is a link I found that might also help lead you in the right direction it also explains cirrhosis in general:

http://www.medicinenet.com/liver_transplant/hesperia-ca_city.htm

Are you currently taking any medications to help treat your cirrhosis? Have you researched and understand how important diet and light cardiovascular exercise can be. It can help you in many ways.

Please feel welcome to post any questions you have along the way and myself and other members will be glad to share what we have learned.
Welcome to MedHelp and I hope we can aid in getting you on the right track.

Randy

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