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05/11/2012 08:31 AM

New to the Group

Bassplayer73
Posts: 3
New Member

Hello all I just joined the group/forums today because I found out I was diagnosed with Cirrhosis in the beginning of March of this year. I also may have pancreatic cancer to coincide with blood anemia and alcoholic hepatitis...the strange thing was I KNEW something was wrong with me for over a year but my stubborness prevented me from seeing a doctor. I was in Portland,Oregon for almost 3 years and noticed some noticable changes health wise in me during my last year there. Chronic fatigue, Jaundis, bad stomach pains, and lack of sexual desire were the first signs of this malady. In March of this year I returned to my home state of Baltimore, Maryland to be with my son and family...upon my arrival at the airport my family were apalled at how much weight I lost and my dark yellow tint caused by jaundis. Then I started to be unable to walk on my left leg and after much prodding I caved in and went to the ER to discover that I did indeed have Cirrhosis and that if I would have waited much longer I would not be here today. So when my ex wife told me about this web site I decided to check it out for information and to educate myself on this deadly disease. I know WHY i have it and it was the years of abuse with alcohol so i can only blame myself....but I have been clean and sober for many months now and the doctors at Johns Hopkins are top notch and very professional. Basically im on 9 different medications right now and my MELD score flucates on a constant basis so I make sure I live as healthy as I can while waiting to get on the donor list. So far the only symptons I have displayed are CONSTANT fatigue, upset stomach, and occasionally my inability to think straight. I know the battle will get worse before it gets better and to have like minded people on here will hopefully be a fantastic support system not only for myself but for all of us as well.
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05/11/2012 08:42 AM
MommaMac
MommaMac  
Posts: 1487
Senior Member

Welcome, bassplayer. My husband was only recently diagnosed, too, with cirrhosis. He was so sick when going into the ER, he was in the hospital for more than three weeks. He's nearly an invalid at present. Very happy for you that although there are bad days, you are getting wonderful care. I love this site. Do not know how I'd have made the past three weeks without the support, wisdom, and ability to vent here. Will keep you in my prayers.

Jackie


05/11/2012 09:39 AM
Mercytee
 
Posts: 74
Member

Welcome Bassplayer,

Glad you found the site, it is a great source of support and a lot of good information. I found out I had cirrhosis due to NASH about three years ago. You will find that people go through the stages differently....this disease is not predictable. I was recently added to the transplant list. I was doing fairly well until this past November when during a routine CT scan it was discovered I had developed Portal Vein Thrombosis.

I pray you find the support you need (we all do) and gain a lot of knowledge from the great people here.


05/11/2012 11:19 AM
bbarton2
 
Posts: 148
Member

Hello, Welcome to the group. This group is full of information. My husband, 68 has diabetes and non-alcholic cirrhosis of the liver. He does not want a transplant. Recently I turned him into the doctor for his driving and we just got word that it is suspended. He is very mad at me, hardly talking-says I am hurting him and family. I told him I am helping and I know it is hard for a 68 year old to give up the independence. So I will be taking his keys. He seems to let go of his every day hygiene-not shaving, etc. He has been in the hospital from December 2010 - March 2012 about 7 times, 6 of these were due to HE (hepatic encephalopathy - ammonia level up and confused) I had to call 911 3 of these. It is pretty scary. We have three boys 21, almost 19 and 16. If I need them they can help. He is taking Xifaxin and lactulose, meds for esophageal varices, blood pressure, iron-anemia. We just went to the hematology due to some blood work that was low - thought something going with bone marrow. What else can go wrong! Thank goodness for support groups. I am also going to support group here in San Diego for caregivers - great group to vent. I am starting to keep a journal of different things going on with husband. Lately since he is mad at me, he does not want me to cook meals or eat. He cannot do that with being a diabetic and he needs protein to keep his strength up - even though he is on low protein diet, low sodium and of course low sugar. What can the man eat!

05/11/2012 11:56 AM
mpmom
mpmom  
Posts: 3275
VIP Member
I'm an Advocate

Bassplayer73

Congratulations on being sober . That's a really bog deal.

You sound like you're on top of this where your Drs are concerned. And how great that you are with your family now.

It's important that you choose at least one to be your back up. You should give that person your Health Care power of attorney and sign HIPPA release forms for any you wish to be able to get information from you drs. Like it or not , Our mental function is often a problem even long before we advance to the point of qualify for trans-plant.

The good thing is that as long as you remain alcohol free you disease progression may slow to the point that you can manage quite well.

Of course this does depend in some part on if you have Pancreatic Cancer. I pray this turns out not to be the case. If you do not have cancer it is completely possible that you will never need a transplant. Patients with alcoholic Cirrhosis often improve enough to be removed from the TP list.It can take a couple of years to see that type if improvement. But if you are not seeing serious complications you have a good chance.

Regardless living healthy is such a important part of our treatment it's great that you are already doing this.

Please check out our website

http://mysickliver.weebly.com/

squirrel new100810


05/11/2012 12:07 PM
dmanflan
dmanflan  
Posts: 1735
Group Leader
I'm an Advocate

Hey Baseplayer!

Welcome to the group! You've definitely taken some great steps to take control (to the best you can) of your health. Stopping the alcohol was huge!!! Do whatever you need to stay completely sober for the rest of your life. It is also great that you have seen doctors at John Hopkins, a truly world class facility. I'm sure that you will find many resources thru JH. Remember to always follow your med teams instructions to a "T". Learn as much as you can about this horrible disease so that you can be an active participant on your med team. Think of yourself as "the boss" relying on your team of experts. Ask questions and get answers that you can understand. Good doctors truly appreciate an informed and compliant patient.

Check out our group's website for a lot of information about the disease, treatments and other information. www.MySickLiver.weebly.com Keep coming back here to ask questions. Read thru as many posts as your eyes and brain can handle. You may also check out other member's profile page where they may have a little more information about themselves and their experiences.

PS It seems mpmom and I overlapped on our responses. Sorry for the replication.

Post edited by: dmanflan, at: 05/11/2012 12:09 PM


05/11/2012 03:44 PM
Bassplayer73
Posts: 3
New Member

Thank you all for the warm welcome!!! Like i said I want to learn everything about this horrible disease and the proper steps to take to make my condition more tolerable. I DO have a POA in my ex wife as she truly cares about me and has opened up her home to me as we do share an adorable 11 year old son together. I want to be around for HIS sake as he gets older and not be a casualty on his soul because I made wrong choices in life. The only thing I CAN do is take my medications faithfully, listen to what my medical team tells me, eat healthy and stay off the alcohol for good. I am four months sober now and I dont miss the booze....I miss the energy I used to have as my body is constantly telling me to sleep. I am fatigued at least 4 days a week and that is a good week for myself....otherwise Im too exhausted to do much of anything besides attend meetings and doctor appointments. I pick my son up from school whenever I can and even though its only about three blocks away it feels like five miles by the time I return home. My ability to drive is hampered and when the doctors first told me this is a possible terminal illness I cant even work anymore so Im stuck with disability until further notice. I constantly say to myself "Im only 38 years old.....how did this happen?? Im too young to have to worry about life and death!" Disease does not discriminate with age, gender, and race....but im trying to keep my spirits high as I possibly can. As far as the HE goes I HAVE had bouts of it....nothing too extreme yet but I do forget things sometimes and do not remember what I was talking about...anger/mood swings....depression....but so have a lot of you or your loved ones that are afflicted. Like I said Im here to learn and participate because the more I know the better armed I am when going to battle against a terrifying enemy.
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