Posted on 07/03/2012 8:29:13 PM PDT by fourth and three
I lurk here a lot but don't really post. I just thought I would post here to see if anybody is familiar with all this.
I learned about 3 months ago that I have cirrhosis of the liver, probably caused by alcohol use. I never thought I drank that much -- maybe 4 or 5 beers a night -- but I had such a habit for many years.
I had no warning of such a problem, and only learned about it when my abdomen started becoming oddly swollen, and uncomfortable. Finally, when I was looking like a pregnant woman (literally}, I was sent for an ultrasound and ascites associated with cirrhosis was diagnosed. This came like a bolt out of the blue. When you get ascites, the prognosis is rather grim, with an expectation of 3 years to live without a liver transplant.
I don't feel like I'm dying, but I've been drained of about 2 1/2 gallons of fluid twice since then, and take diuretics and drastically limit salt intake. I want to work but I constantly feel weak, and I am not sure how honestly I should talk with an employer about my condition.
I also have a six year old girl who doesn't understand why daddy feels so weak all the time.
Just wondering if anyone knows about this condition and might have information that is valuable to anyone who has this disease.
Dr Bert Berkson, MD, is perhaps the world’s leading expert on liver disease and treatments to regenerate the liver w/o going the transplant route.
Treatment
Dr. Berkson and his patients are partners in the healing process. He creates a holistic program for each patient that combines conventional medicine, vitamin and herbal supplements, nutrition, healthy lifestyle practices, and antioxidants like Alpha Lipoic Acid (administered at Integrative Medical Center). Click here to learn more about Alpha Lipoic Acid, a natural substance produced by our bodies that Dr. Berkson has worked with since 1977.
Many of our patients travel from around the country or other countries; therefore demand for appointments is high and we are not scheduling new patients for general health appointments.
Dr. Berkson commonly sees patients with the following:
• Cirrhosis
• Chronic Obstructive Pulmonary Disease (COPD)
• Diabetes mellitus
• Hepatitis C
• Lupus
• Multiple Sclerosis (MS)
• Rheumatoid Arthritis
Dr. Berkson tailors his treatment for each individual and can only offer medical advice to patients who have come to the office for an appointment. He cannot give medical advice over the phone. Please contact us to make an appointment at (575) 524-3720.
The above is posted from his website.
You need to read up about Hepatic encephalopathy as well as becoming aware of the symptoms from your ammonia levels increasing. The swelling of your abdomen is caused by ascites. You can also expect problems with your platelet levels because of compromised spleen function.
Get yourself to a specialist ASAP.
I will pray for you.
Good News!
My grandfather had it. Though I do not know all the ins and outs of the disease, he was very ill. There were days when he felt up to mowing lawns and days he did not. Some of the medications he was on made things even worse.
The fortunate thing is they were able to find a doner for him. After the transplant he was able to return to a normal life.
That is ultimately going to be your only out. Financially there are grants you can get from some private companies to help with expenses. There are several databases to get on for a donor.
Also the Southern Baptist church has helped many people needing transplants and major surgery financially. There are also some Catholic organizations that will assist with these types of expenses. They may also be able to help get you on some of the lists for donors. Most local hospitals will give you a list of organizations that can help you with these types of expenses as well.
I wish you the very best with your illness. These things are never easy most especially with small children. Tomorrow I will call and see if I can get more specifics for you.
I am very sorry to hear about your health condition. It must have been devastating news.
But don’t give up! — do what you can and need to do and also talk to doctors at university medical centers, see if there are treatments that help or at least slow down the progression, keep you from getting complications, etc., explore whether you could get on a liver transplant list, and so on.
Regarding your work, I think you need to discuss it with your boss, so they understand, rather than assume you just don’t feel like working as hard. I don’t know what kind of job you have, in some jobs they may let you do some work from home. Also I don’t know how much sick leave you have, if any, to maybe take a day sick leave and work 4 days.
God bless you and give you strength to pursue options that may help you.
Prayers for you and your family. We do have a family friend that was diagnosed with something similar to you (after years of hard liquor consumption). He was placed on the transplant list BUT denied such a transplant because they checked for alcohol (he was positive). Now... he was diagnosed about five years ago. He is still very much alive but he does get flare ups. Again... prayers for you. Fight this condition with everything you have.
My brother in law got a liver transplant a few weeks ago.
To qualify for transplant, or too simply live longer, you must stop drinking.
Carr Shelby lived over 20 years with a transplanted heart, into his 80s.
Excellent!
Sounds brutal in terms of the disease.
In terms of work you’re probably going to have to think outside of the box.
If your detail oriented you can probably find internet marketing or other jobs that involve placing ads on craigslist or other internet sites on Craigslist.com, elance.com or vWorker among lots of other things.
The pay won’t be great, but you’ll be able to contribute, pay some bills and if you can only work an hour here or an hour there, if you manage client expectations you might be able to generate some revenue.
The most important thing is to be good to yourself and get well.
My heart goes out to you. Hope you kick this thing to the curb!
Some potentially helpful info about ascites:
scroll down about a third down the page:
May God hold you close during this time.
I can’t help but think there are so many reasons to drink these days.
But the best reason to stop is your wonderful daughter. She’ll need you in these trying times.
Wish I could help with info, but I can only offer prayer.
Consider supplements such as alpha lipoic acid and milk thistle (active ingredient is silymarin) http://www.earthclinic.com/CURES/liver_damage.html
I'll pray. It's grim.
/johnny
Amen, in Jesus name. Amen
Amen, in Jesus name. Amen
Prayers up!
Will pray for you and your family.
My heart goes out to you. Thank you for your honesty and courage in opening up about your condition. You do have a lot to live for with a six year old daughter. She will always need you regardless of the bad decisions that may have brought you to this point.
I am a cardiac nurse and have had this conversation with many patients facing their life as you are now. You now have a choice to make about the path of your life from this point forward. Your body is frail and only your strength of will can change it. The medical team can assist, but in the end, only you can change the outcome. Accept the past and change the future.
Cirrosis of the liver has a poor prognosis because the patient is usually not willing to make changes in lifestyle that can improve their health. It is difficult but you alone must decide whether you are willing to participate in healing your liver or continue on an ugly path of liver failure.
Educate yourself on liver functions and health. You can make changes that will allow the liver to heal. Become the captain of the team of doctors and nurses with the goal of being alive for your daughter and fulfilling your purpose. Even if you fall to extend your time you can extend your legacy.
Choose to become who you were meant to be and maybe you can extend the time you get to be that man.
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