I wanted to create this blog because I realize that there are many people out there who just don't have the time (or Obsessive Compulsive Tendencies) that it would require, to spend months and months scouring the net for the best chunks of information, and putting them all in one resource. I was very fortunate in that I was able to take a few months off work, and I am also able to work part time. I realize many people who have cirrhosis are way too tired or sick or busy trying to recover, to make a blog like this. Many caretakers are too exhausted or they have kids and just don't have time. I was very blessed to have time and no kids, so I thought, why not make a blog and share this with people so they don't have to waste as much time as I did, trying to find the answers? When you or a loved one has cirrhosis, it's as if you can hear a loud clock ticking and you feel like you could run out of time, so people could find what they need, FAST. It is astonishing to know how much invaluable information there is out there, and yet, I've had to do a ton of research, in order to find the information I was looking for.
It's sad to think the majority of people out there will never get other treatment options, besides what traditional doctors have to offer, because people who are sick with cirrhosis are not likely to want to spend hours and hours in front of a computer, researching what natural (and effective) treatments are available. And the loved ones of those with cirrhosis, may also be exhausted from working full time AND taking care of their loved ones. There are probably a lot more people who feel they have no other choice, but to accept their doctor's advice and try to get on the transplant list. I would at least like to try to reach some of these people and let them know, there are other options!
A few weeks ago, I thought there was just one thing that reversed fibrosis and scar tissue in cirrhosis. But I kept digging and digging for more info, and when you do, you'll find a little more info here, a little more there. Users will comment on a website and it will lead you to another treatment option or link or cure or something and then you just keep reading and reading and finding out more information, and eventually, I'd find some "golden nugget" of info that could potentially help Jake! But why wasn't it all in one easy-to-find place, for all of us cirrhosis sufferers (this includes the wives, husbands, partners and family members trying to help!!)
For example, today (12/29/13) I found THE best, most hopeful piece of information that I have seen so far. I was able to see an actual video, of a patient who has had been treated for cirrhosis with Stem Cells, and it worked for her!!! But for whatever reason, this super valuable piece of information took two months for me to stumble upon. I have done numerous google and youtube searches of phrases like "cirrhosis cure," "cirrhosis treatment," "cirrhosis supplements" etc., but somehow this video never surfaced. And I just never got around to looking up the exact term, "stem cells" and "cirrhosis" together. Maybe there was a part of me that put it off, thinking, well, you'd think some of these doctors at this really good hospital we just stayed at for a week, would have heard, and told us, if there were advancements in stem cell therapy for cirrhosis patients, that would allow Jake to have this done. After all, it took me a week to get Jake (and his health insurance) connected with the best liver / hepatology team in the high tech area where I live. But NOPE!
The first time I heard of anyone even mentioning a stem cell transplant for cirrhosis, in two months of looking for help online, was when I saw a reader make a comment on a blog post, this morning. You can see the post on this page. This is what the person said:
Submitted by on
April 8, 2013 - 8:11pm
I to have severe cirrhosis of the liver. I caught Hep C from blood products while serving on active combat duty with the USMC. Using the Antivirals for 2 years got rid or the virus, 7 years virus free, the cirrhosis was extreme with my prognosis for a long life not considered without a transplant. After much research I contacted a Doctor and determined that stem cells from the umbilical cord would benefit me. It has added many years to my life and had a pronounced positive effect on my quality of life. Most of the symptoms have disappeared and my liver panels look good. I would encourage anybody to look into this. China has put a lot into this area of study and that is where I would go if airfare from US was not so high. There are several good options out there no matter where you live. In the US it is not covered by insurance so I had to pay cash. I managed to get it in two stages and was 1/2 the money for ech stage. This made it affordable to me.
That was all he wrote. He didn't mention anything about the particular doctor he saw. One other person asked, "Details????????" But Johny didn't provide any. So I ended up googling it. And look at ALL THIS INFO that popped up!!! It's been right there all along, but I was spending so much time researching supplements and natural cures, that I didn't even get around to looking into stem cell research. When I googled "Stem cell" and "Cirrhosis" I found this amazing video, showing a woman who had cirrhosis of the liver, and was treated (in China, I believe), and she raved about the procedure and feels so much better now. At the time I clicked on the video, it had less than 300 hits, even though it was posted over a year ago. I thought, how is it possible that, in the United States alone, over 100,000 people were dismissed from hospitals last year, with cirrhosis being the main reason they were there, and there are 30,000 people who DIE from cirrhosis every year... and yet, less than 300 people clicked on this video?
It's because just about every doctor who sees patients in the hospital, for cirrhosis, SAYS THAT THERE IS NO OTHER OPTION BESIDES A TRANSPLANT.
I will never forget the day I read a discussion thread by a woman who was my age, whose husband (who was Jake's age) had just died of liver cirrhosis. The story was so similar to ours. Like me, the wife had been through this once before. Her husband was hospitalized, and told he needed to stay away from alcohol, which I believe he did, for awhile. But then he eventually went back to drinking... starting with one drink. His wife thought it wasn't a big deal, thought he had it under control, and would join him for a drink on occasion. Eventually, the occasional drink turned into him becoming a heavy drinker again. Next thing you know, he was hospitalized again. His wife didn't know how to help him, and neither did the doctors. He got sicker and sicker and eventually started coughing up blood, and his wife finally had to report to the other members in the forum, that he had passed away. I thought, Oh my God. That could be us. It was such a wake up call. Our stories were so similar. I called Jake at work, freaking out and crying and saying, "You need to go see a doctor NOW. I mean NOW!!!! This is SERIOUS, YOU COULD DIE!!!!!"
I am very thankful to this woman, who did this post, because it was a real eye opener for me to see how serious this condition is. That is another thing I want people to be more aware of... because I really think that if either Jake (or I) had actually realized HOW BAD things were going to get, he would have gone back to AA a long time ago (and if not, I would have made him!!!)
Whoever you are, reading this, I hope you are able to find some of this information valuable, and that you and your loved ones will not only heal, but that you will share what you learn with others. And please encourage people to get help as early as possible. It's important to let people know how serious cirrhosis is. Because as happy as I am, that there are treatments available, I still wish we hadn't had to go through this at all. I love my husband more than anything, but the fact is, we have lost a HELL of a lot of time and money, trying to recuperate from this. And recovery will still be a long process that will undoubtedly take years. I hope you do not have to go through the same thing.
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Please note: I am not a doctor and I am only able to tell you what I have learned by doing my own research on the internet, and share with you the things that have worked for my husband. Please remember that Liver Cirrhosis is a very serious disease so I am not saying, do not see a doctor. Doctors have helped my
husband a lot. But I believe it is wise to do as much research as you can, and find out why
they are giving you every one of the medications and treatments they are giving you.
I believe they do not always know about or understand every treatment option that is available,
and there are many good options out there that can help.
Your health is ultimately your own responsibility, above anyone else's.
Best of luck to you!!!
If you have something to share, please feel free to leave a comment on this blog.
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I think it's great that you are sharing your husband's health and problem. I too was an alcoholic and drank everyday. Now I have been sober for 4 years. Thank you for sharing this. I think more people should read this!!
ReplyDeleteAww, thanks, that's a very sweet comment. Appreciate the feeback : )
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