Cirrhosis of the Liver Community
how to deal with the pain of end stage liver disease and liver failure
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Cirrhosis is the end result of chronic liver damage caused by chronic liver diseases. The purpose of the community is to share support and information with Cirrhosis of the Liver patients and their loved ones. Topics in the community include: causes, clinical trials, complications, family issues, living with Cirrhosis of the Liver, prognosis, research, surgery, treatments

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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
27 Comments Post a Comment
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446474_tn?1385271190
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
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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.
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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
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446474_tn?1385271190
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
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Im in a small town named Hesperia,ca about 40 mins south of barstow. Thanks again.
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1475202_tn?1388955435
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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Avatar_f_tn
Thank You for your help. I'm taking lasix, spironolactone, propranolol,omeprazole, ranitidine,metronidazole,baclofen,tramadol. I've read alot about my condition.but this is the first time that I've got to communicate with people that have what I have. right now my belly is so swollen that it hurts to breathe. my doctors have talked about a T.I.P.S procedure to reduce pressure, an tapping to remove fluid. I've read about both and they make me nervous. lately I've been foggy minded and really tired. but I guess that's just par for the course,lol. thanks again.
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446474_tn?1385271190
"T.I.P.S procedure to reduce pressure, an tapping to remove fluid. I've read about both and they make me nervous. lately I've been foggy minded and really tired."

"Refractory ascites is defined as fluid overload that is unresponsive to sodium-restricted diet and high-dose diuretic treatment (400 mg/day spironolactone and 160 mg/day furosemide) or recurs rapidly after therapeutic paracentesis."

The next logical step if diet change and diuretics done work is TIPS.

From AASLD Practice Guideline for Management of Ascites -

http://www.aasld.org/practiceguidelines/Documents/Bookmarked%20Practice%20Guidelines/ascites%20Update6-2009.pdf
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Recommendations:

* Patients with ascites who are thought to have an alcohol component to their liver injury should abstain from alcohol consumption.

* First-line treatment of patients with cirrhosis and ascites consists of sodium restriction (2000 mg/day) and diuretics (oral spironolactone
with or without oral furosemide).

*  Fluid restriction is not necessary unless serum sodium is less than 120-125 mmol/L.

* An initial therapeutic abdominal paracentesis should be performed in patients with tense ascites. Sodium restriction and oral diuretics should then be initiated.

* Serial therapeutic paracenteses are a treatment option for patients with refractory ascites

* Referral for liver transplantation should be expedited in patients with refractory ascites.

* Diuretic-sensitive patients should preferably be treated with sodium restriction and oral diuretics rather than with serial paracenteses.

* Liver transplantation should be considered in patients with cirrhosis and ascites.

* TIPS may be considered in appropriately selected patients who meet criteria similar to those of published randomized trials.

* Peritoneovenous shunt, performed by a surgeon experienced with this technique, should be considered for patients with refractory ascites who are not candidates for paracenteses, transplant, or TIPS.
----------------------------------------------------------------------------------

All treatments are based on risk vs. benefit. Uncontrolled ascites is a dangerous condition and can lead to infection which is your condition can be very, very serious. While we would all prefer not to have any of the procedures if we had a choice we have to accept that these are the temporary things we must do to stay alive so one day we will have the opportunity to get a life-saving transplant.

This should be performed at a transplant center. LA is only 80 miles west of you. I know of many people that live further from their transplant center. When it comes to a life and death issue, 80 miles is not going to stop me from risking my life. You really should be under the care of a transplant center NOW. That your doctor hasn't insisted on this is something I can't understand.

Foggy minded and tired. Yes, I can relate.
When you mentioned the drugs you are taking I didn't see Lactulose and Xifaxan. ??? Are you taking meds for your HE? You should be.


Take care.
Hector
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163305_tn?1333672171
You should be on a strict no salt diet. Read all packages, avoid anything that says sodium. Even bagged salad may have added salt.
This will help to stop your ascites, the fluid retention from worsening.


I'm guessing LA is closer to you than San Diego. My suggestion is to call UCLA and see a hepatologist at their transplant center as soon as possible.
Just call, tell them your situation and make an appointment. Have your doctor send all your records or bring them with you to your appointment.

http://transplants.ucla.edu/body.cfm?id=46
(310) 825-8138
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1475202_tn?1388955435

It is very common amongst people who abuse alcohol to develop gastro esophageal reflux disease (GERD). When you eat, food passes from the throat to the stomach through the esophagus (also called the food pipe or swallowing tube). Once food is in the stomach, a ring of muscle fibers  prevents food from moving backward into the esophagus. These muscle fibers are called the lower esophageal sphincter, or LES.

If this sphincter muscle doesn't close well, food, liquid, and stomach acid can leak back into the esophagus. This is called acid reflux or gastro esophageal reflux. Reflux may cause symptoms, or it can even damage the esophagus.

The risk factors for reflux include:
Alcohol
Hiatal hernia (a condition in which part of the stomach moves above the diaphragm, which is the muscle that separates the chest and abdominal cavities)
Obesity
Pregnancy
Scleroderma
Smoking

I am curious as to why two medications for GERD have been prescribed- Omeprazole & Ranitidine.
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Tramadol is in a class of medications called opiate agonists and is highly addictive. It should not be prescribed for person(s) with an addictive personality or liver disease. All pain medications should be avoided to include headache medicine whenever possible.
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The baclofen is used to control muscle spasm. The "liver pain" you explained above. It’s more likely it is muscle spasms or cramping causing this pain and not the liver at all.

You should however take a look at the side effects from Furosemide.
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000791/
Muscle cramps are the first thing listed. Diuretics (water pills) are often prescribed to treat ascites and portal hypertension. Perhaps a different medication should be considered by your doctor.
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These are reasons it is urgent you see a gastroenterologist and hepatologist. You could start feeling much better right away. Loss of thought clarity and excessive tiredness suggest hepatic encephalopathy (HE) (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001347/) or side effects of the medications you are taking. I wish I could be more helpful but these are things lab testing and your doctor(s) need to figure out. An elevated ammonia level would be a strong indication that HE is responsible for how your feeling. Avoiding protein can assist in lowering ammonia levels and have you feeling better until medication such as Xifaxan and lactulose can be prescribed.

Also I would suggest a multivitamin for seniors. This vitamin should not contain iron as it could later cause serious health risks.

Stretching may also help with muscle ache in your legs as it increases blood flow which pushes out the built up toxins.

I know you mentioned you have stopped drinking 3 years ago, congratulations on your sobriety. 2 ½ years for me. You may already know but here is the basics. Liver cells normally die off with everything we ingest. It’s okay because new cells are made and replace the old ones. When a person abuses alcohol these cells are being killed off at a much faster rate than they can be reproduced so at this point scar tissue is formed and the liver is permanently damaged. We call this cirrhosis. If you eliminate the cause (alcohol) then the liver may begin to repair itself or at least the areas that are capable of repair. So at this point we can only hope to much damage hasn’t been made. Hence the term compensated cirrhosis. Decompensated is when too much damage has been done to the liver and it can no longer perform the required function to meet the body’s demand. Less demand from your liver is possible through diet. So you can now understand why everything ingested must be carefully considered and why abstinence from alcohol is so important.

These are mere suggestions as I am not medically qualified but these are things that have helped me along the way and I hope they will you too :) I hope the very best for you, please keep me posted on how you are doing. Take care,

Randy


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Avatar_f_tn
Thank you so so much, I dont feel alone in this anymore. I spoke with people in person here in california,like a friend of a friend through my AA program, who is the ambassador of donate for life organization here in this area, she herself had a liver transplant,she was really great, but could only give me what her
experience was, and not the direction I've so been looking for. I now have hope, and to think I was thinking of just giving up and moving back to nevada. well not anymore I'm going to fight for me. Thanks to all for the information an  help that I've been getting. Much appreciated.
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446474_tn?1385271190
Yes, knowledge is power. By learning about you will come to realize that is the vast majority of cases End-Stage Liver Disease doesn't have to be a death sentence. It is only a death sentence if the disease has progressed to far for current medical practice to deal with or if I person chooses to die rather than going through the challenges it takes to get to transplant and then care for your donor liver for the rest of your life. It is about commitment and being responsible for your own life.

No one can do this alone. No one. You need the proper medical care to handle the medical issues that will continue to get worse over time. That is why all of us with ESLD are under the care of hepatologists at transplant centers. Without their expertise many of us wouldn't be here today. Without the transplant centers expertise in finding and then treating my two cancer tumors the odds are this would be my last last of life. Luckily with the constant monitoring of all of my liver disease issues I plan on getting a transplant in 6 months or so.

The other part of it is the support we get from those around us. It too is vital. As liver disease progresses we become more and more helpless and capable of taking care of ourselves. Many of us will vomit blood, get infections in abdomens or go unto a coma from HE. Without the help of others any one of these conditions can be fatal. We all have our ups and downs mentally dealing with this disease. For many of us it is the most difficult thing we have ever experience. The thoughts about our own deaths is not easy for anyone to bear. We see our bodies and parts of ourselves that we used to take for granted wither away one by one. We all come to this with our own personalities and life's baggage. We use whatever we can to keep hoping and surviving day by day. This is our fate right now.

With the gift of life we can life again. Get a second chance at life. Now the this disease has shown us the death we all face. How many people get a chance to do it over again? Not many. In that way we are very lucky. We have to pay for it with a lot of suffering but everyday we live after transplant is a day we wouldn't have had. For myself it is no longer about quantity but quality. Many of my fear I have overcome realizing most of my fears are foolish. Who cares away? I figure if I only have a limited time to live I am going to live the way I want to live and be who I am. Take risks I never would have before. What have I got to lose? Nothing really. If I die well then I will never have a chance to risk again.

As you can see by meeting people that have had transplants, you can't spot them out of a crowd. They look like everyone else. They are living their lives and doing what they think is important for them to do. I have meet maybe a 100 liver transplant patients. I figure if they can do it why can't I? We must find hope and light even through our darkest days. Because sometimes we get so beaten down it seems like these is no hope. No future. Only pain and emptiness. But somehow we bear it and when we find the strength we pick ourselves up and push ahead.

Keep fighting. In time you will realize you are a lot stronger than you ever knew and that is a very good thing to know as you go through life. If we can survive through this, what can't we do if we put our minds to it.

So get help at a transplant center. That is a milestone that will get you firmly on the path to beating this disease. And gather all the support from those around you. You may be surprise as to who comes through and who doesn't. You will find out who really cares for you. Another good thing. I have lost friends (I thought they were friends) and I have gained even more.

Hang in there. You are not alone. Find support, both medical (LA transplant center) and psychological and educate yourself about ESLD and liver transplant. It is not as scary and overwhelming as it may seem.

Hector
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163305_tn?1333672171
You are far from alone.
In fact both Hector and I live in California but in the northern part of the state.
I'm 3+ years post transplant and he's on the list.

Start making some phone calls and get yourself to a good transplant center.
Let us know how it goes.

OH

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1654058_tn?1376739127
You're really having a tough go of it. Congrats on sobriety! I hope you find a dr who will help you to get the medical attention you need. The human body is amazing in it's capacity to function. I'm on a lot of the same meds you are. I hope you've made dietary changes too. That can help a lot!
Peace, Karen :)
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Avatar_m_tn
just want to comment - you've had the good fortune to hear from several of the most remarkable people (in my humble opinion) who are in this rather large group.  Randy and Hector in particular are very knowledgeable, experienced - and generous-spirited.  Everyone here has given you excellent advice.  I hope that you're following their suggestions - as we all wish you well.  I saw no mention of HCV (Hep C), so apparently that is not a factor -
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Thanks, an you are oh so right your all pretty awesome I registered for loma linda, and I'm waiting a response for an appointment. I dont have hep c,but I see my uncles going though it 1 doing treatment,and both are on the liver list.
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Avatar_m_tn
I have a few comments and a few questions. First off, I live in Kingman, Arizona. In April of 2011 I went to the ER feeling ill and I had Jaundice. I will say I was a beer drinker for at least 30 years, toward the end I would occasionally have a Vodka and Orange Juice or the morning cure all of a Vodka and V8, nothing to an extreme though. Had I not went when I did there is no doubt I would of died. I had an infection throughout my organs. Quite honestly I only remember walking into the ER, and one other moment for the first two weeks. After they cleared most of the infection I was transported to Mayo Hospital in Scottsdale where I spent the next several months under going treatment. After I regained most of my senses and it was time to move, my primary doctor was prepared to send me to a hospice. My family fought back and found me a nice nursing home in Scottsdale where I went through therapy to learn to walk and basically improve my motor skills. After a total of three months, start to finish, I made it home in a wheelchair, never used it, I refused to use it. I went through the ascites big time, had massive dizzy spells, and even had a seizure or two.  My last beer was two days before I went to the ER. I didn't need to go to treatment for drinking even though the doctor thought I should. He refused to put me on a transplant list until I did. Okay, it's coming up on two years in April, I still don't drink, I do still have an occasional dizzy spell, and have passed out twice in the last 9 months. I'm driving again but I don't drive long distance for obvious reasons. My last checkup was in June and I am suppose to be seen every six months. My MELD score has returned to a near nominal. However half the liver did not recover but since I refused to go through treatment and my MELD, I'm still not on a list. I haven't heard from my herpetologist since my last appointment. I fired my primary doctor. I've been on the normal meds this entire time, Spiro, Lactalose, Sertraline, Tamsulosin, and Furosemide. Should I still feel terrible, weak, tired, and have a low appetite? Can I expect to get work again? I plan on waiting a few more weeks before I get worried about the Doc not scheduling my appointment. I just have the feeling that I have been left out in the dark. Any suggestions?
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Avatar_m_tn
my grandmother has been suffering from liver cirhossis for 3 years now. her condition is not stable, and she goes in and out of hospital every now and then. her stomach is bloated, her hands has scars, she cannot talk and eat properly. can anyone please suggest what to do. please
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Avatar_f_tn
If she lives in Indonesia I don't know what is available in terms of medication to help her with her symptoms of cirrhosis. The hospital likely has liver specialists and they may be able to provide medication to ease her symptoms and suffering.
Apart from that make sure she has no salt in her diet and  no red meat.
Maybe she can drink her meals in the form of soup.

I am sorry for what you an your Grandmother are suffering.
All the best to you.
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Avatar_m_tn
i was diagnosed with stage 4 esld in november 2012 the first hospital i went 2 had me buried they gave me 6months 2 5 years got insurance went 2 cooper medical center and got put on list problem is i dont have meld score yet have 2 go 2 our lady of lourdes center 4 consult 2 get set up 4 meld score i am on borrowed time now and dont know if ican  but donttrasplant without meld score plus i am type o positive and that takes even longer i have been clean 17 months but dont think i will see new liver because i fear  i will b 2 sick
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1475202_tn?1388955435
Hello and welcome to MedHelp.

I am so sorry to hear about your situation and congratulations on your sobriety. Your MELD score is used to determine if you are eligible to be put on the transplant list so if you are listed then your MELD has already been calculated. Blood lab testing is all that is necessary to calculate the MELD score.

Cooper medical center has the ability to offer you the best treatment available since they are a transplant hospital. Do your best to cooperate by taking the medications and follow the diet your doctors have set forth for you there.

I don't know your situation but many/most people are terribly ill before receiving a transplant, this is just the process some of us have to go through. So keep doing your best to stay as healthy and strong as you can for as long as you can. Remember most transplant centers require six months of documented sobriety before listing a cirrhotic patient. Some will even require rehabilitation classes.

I hope this helps you out and I wish you the best. Take care,

Randy
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Avatar_f_tn
Hello all! I am a 33 year old female and i was just diagnosed with corrhosis of the liver on May 10. I don't see my lover specialist until July. Ii have been researching and i have a question.i know salt is a no, no and alcohol of course not but how many grams of fat am i allowed daily? Please help, a number would make dieting much easier for me!
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5567875_tn?1370043850
im a 49 yr. male. diagosed esld & hep c in 2009. after my biopsy from gallbadder surgery.i was unaware until then.i was never hardcore drinker however my father & numerous uncles died of liver disease. trying make long story short? my dr. at that time gave me a death sentence 3 to 9 mnths and he immidietly had me on hospice care.4 mnths later my liver started to function enough & release hospice care.talk about a very dark & scary ordeal i made it through.i since fired dr. who put me in hospice care,my death bed. i,m on ssd and made the transplant criteria at the U of WASH.transplant center.my latest meld score is @ 14 as of feb. 2113.i go every 3 month for bloodwork & MRI.my last 2 mri,s revealed some new spotting or growths and then they bring up the cancer scenerio.i,m being well moniterd so as current it,s wait & see. i try keep my hopes high & have lots of support.i,m taking aldactone,lactulose,prilosec for g.e.r.d also moniterd closely for pain meds.i hope all on this site are well or get the care and support going through your own journey.peace be with you all... RICHRD in seattle.
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4670047_tn?1375734001
Hi there!! You should start a new thread of your own. Up at the top there's a brown box that says "post a question". It's ok that it's not a question! There are others on here from your area! There's one that is needing a transplant! Your spirit sounds great!!   Good luck to you!!
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Avatar_f_tn
I was diagnosed with cirrhosis in 2010.  Ascites and paracenthesis.  Spironolacone didn't work.  Enecrin did, but take all diuretics with "Smart Water" to restore the electroltres lost by the diurectics.  This will lessen the muscle spasms.  Low salt diet and all, I weaned myself off the diurectics.  I started taking MILK THISTLE.  All liver function tests are normal, no ascites or any other symptons of liver disease, only the liver biopsy to confirm cirrhosis.  The doctors do not believe in herbal remedies.  They work!  I take the brand NOW, Liver Detoxifier & Regenerator, daily along with Traditional Medicinals Every Day Detox Tea.  All suffering, please try this.  I am now fine!
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Avatar_m_tn
Hi.  As a person with cirrhosis, first I went through all the stages of grief, including therapy that included "How to live when you are dieting" , but have not accepted this condition because I don';t want it.  To that end, I began my research and found out that cannabis (yup, that evil weed) was used to treat cirrhosis, before the FDA and Rockefeller at al began the fabricated stories of the drug called marijuana.  In fact, prior to the fabricated stories and subsequent criminalization of the cannabis plant, cannabis sativa was included in the pharmacopoeia as a cure (yes cure) for among other diseases it included cirrhosis.  Just after this new year, I was crying and praying while typing "I need a miracle cancer cure" when the name "Rick Simpson" appeared.  Long story short, cannabis oil reversed my cancer (i know now of the numerous cancer cures out there  besides cannabis that have been buried).      
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Monica James
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