hepatitis cirosis

hepo c, cirrosis, major largemustle spasm transplant platletts below 50
0
strep of liver - 0.0%
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pnemonia related from liver - 0.0%
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major bleeding ulcers related to liver - 0.0%
0
major scary leg mustle spasm even in neck scarry - 0.0%
1
transplant - 100.0%
0
different opionions from so many doctors - 0.0%

 
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kellyann
New Member


Date Joined Dec 2009
Total Posts : 1
   Posted 12/30/2009 3:21 AM (GMT -7)   
skull redface turn AT IS STREP OF LIVER))  HELP???????Hi , 1st time chatter.I'm 45 yrs young. husband of 30 yrs dont have it. i dont know when i got this.. i was diagnosed with hep c 10 yrs ago..  the P.A. came into room and told me i had hep. c... no problem, i would probably live, to be an old lady. 1 yr. later, i went back.  P.A. came in ,and said ,I have 1 yr to live .  now i have cirrosis of liver ,and now , to late for interferon.  I was hospitilized, twice last yr. 1st time pnemonia, they blamed it on liver. almost died hos... for 28 days. i got so sick and weak with in, 4-6 hrs , after i go down. I litterally cant move my body. i couldn't even move, an 1 inch. in my bed   I called 911 . i went to hospital by abulance. Dr. said its all related to liver , platletts are running 50-53 My dr says it death soon... i asked how long he said possibly soon when platletts go below 50 its grave .Now white blood up red blood down billy rubin up but I feel great .I don'y look yellow..... I was hospitilized again at the end of sep. for 21 days  intinsive care for 8 days.They said my culture came back and i had amonias in liver and was diaganozed with some weird strep of the liver know one has ever ever heard of this... What is STREP   OF  LIVER ?  said i was very very sick my numbers were low and was put in critical care unit .I went to get anoither opinion in ann arbor they say i can get a new liver. dr. on west side of state of MI. say Im not a candidate. I also get really bad spasmsin my big musle mostly in legs. it scars me so bad ,I mostlly get them at night. I cant never stretch, to scared i will go into that spasm.  i feel i could litterally throw up, the pain is so bad and big mustle tightens up like a knot .i also get this in my neck.  if i yawn but i come out of it. i had this happen in public, a week ago for the 1st time. and felt lke a freak show . It lasted a good 8 min. then i breathed slow shook my thoughts out . I get so scared, due to i really think this is going to happen and the ambulance is going to come and stap me in that gurni, i would pass out from the pain or frieght from pain alone.. Is any thing like this happening to them/? I am on oxygen with all activity I need to know is there a support group on line ?is this happening to any one ele. Please help me.  kellyann

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 12/30/2009 3:27 AM (GMT -7)   
So sorry to hear ur trouble Kellyann... the moderator will be able to shed more light when she reads your post... there are many here on different paths of this disease... and yes, there is a community here... and yes, it does help... hang tight... the rest of the gang will post... Sandi (Arneeb)

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 12/30/2009 11:31 AM (GMT -7)   
Hello Kellyann and welcome to HealingWell.
 
I had never heard of it either until I read your post.  But I did some research on the internet and found out a little.
 
It's actually the streptococcal disease.   Like in strep throat.  But if someone has a compromised immune system as you do......it can attack almost anywhere in your body.  Lungs,muscles,liver,blood etc. 
They treat it with high powered antibiotics....as I'm sure you were while you were in the hospital.   There's a wealth of information on the internet about it.......just google strep liver. 
 
Did they give you a reason why you are not a candidate for a liver transplant?  Different hospitals have different criteria on transplants patients. 
 
Take care....thoughts and prayers........   
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/30/2009 12:02 PM (GMT -7)   

KellyAnn, welcome to the forum.  I had never heard of liver strep, either.  I hope that you are now clear of that.  I have hep C (diagnosed in '93), cirrhosis (diagnosed in '07) and have survived liver cancer.  Are you seen by a hepatologist?  Have you ever had treatment for your hep C?  It was offered to me at Mayo, despite my cirrhosis and liver cancer history.  You might want to make an appt. with a transplant center for possible evaluation.  Nobody can really say how much longer your have to live, as every case is different.  However, you can improve the situation you are in by getting enough sleep and rest, eliminating red meat from your diet, and eating lots of fresh fruits and veggies.  Drink spring or filtered water and green tea.  Lower your stress level.  Absolutely no alcohol or drugs that aren't prescribed, of course.

The cramps are possibly caused by lack of potassium.  Are you on diuretics? 

I suggest you read some older posts here and also the information in the folder at the top of the forum page, Hepatitis Resources, for more information.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/30/2009 1:38 PM (GMT -7)   

It wasn't I who recommended vit. D supplement, Rick, but whoever did--I'm glad it worked for you.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


ailsa
Regular Member


Date Joined Nov 2009
Total Posts : 35
   Posted 1/1/2010 9:13 PM (GMT -7)   
I





was diagnosed with autoimmune hepatitis in 2007. 6 mo. later cirrhosis. On pgh. starzl transplant list x 2 years. Highest meld was 20. now 6. off list. Get to a transplant center and find your score(meld-model for end stage liver disease) consists of bili, inr, and creatine. The sicker (higher) that no. more likely to get transplant. They can give platelets. have you had a bone marrow biopsy?

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/1/2010 9:20 PM (GMT -7)   
Hi, Ailsa, and welcome to the Hepatitis Forum.  Thank you for your suggestions.  I noticed that you post on a couple of other HW forums and that you are 6 wks. sober.  Congratulations!  Did you get through the holidays okay?  I have 23 yrs. of sobriety, one day at a time, and for me AA worked.
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 1/1/2010 10:36 PM (GMT -7)   
tongue tongue anks Rick for info on Gel and Vitamen D... never thought to ask u guys.. Mike has same cramping problems... and stuff... Arneeb... will try

ailsa
Regular Member


Date Joined Nov 2009
Total Posts : 35
   Posted 1/2/2010 6:37 PM (GMT -7)   
Connie,
Yes, I fit into a few of the forums. Holidays were rough, but I'm ok. Thanks for asking. I am considering asking a friend (5 yrs sober) to be my sponsor. Do you think that would be a good idea?

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/2/2010 7:24 PM (GMT -7)   

If it's someone you trust to keep your innermost secrets private, and it wouldn't interfere with your friendship.  However, I really think it's best to choose someone who can be more objective.  Your friend could be a temporary sponsor, though.  Go to meetings and listen to others.  Take your time in choosing someone whose sobriety you admire.  Then ask the person of your choosing if she is available to sponsor you (some already sponsor too many people to take on another.)  Make sure the person you select has at least 5 yrs. of sobriety, is active in the program, and is someone you feel comfortable talking with.  Sometimes there is a personality conflict and it doesn't work out and you have to find someone else.  Just all part of the process.

Best of luck to you!

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 1/5/2010 3:23 PM (GMT -7)   
Before receiving a liver transplant in July, I had terrible cramping in my calves and hands. My hepatologist prescribed Quinalone , basically qiunine. It worked beautifully, but your take it daily, not when the cramps start. Stay well. **David**

deedee48
Regular Member


Date Joined Aug 2009
Total Posts : 148
   Posted 1/6/2010 6:13 PM (GMT -7)   

Hi Kelly and welcome to the forum. I'm sorry for what you are going through and unfortunately I know how you feel. I have hep c with cirrhosis,portal hypertension,leg swelling,red marks everywhere,tired,diabetic,I could go on and on. As for the cramps, (which i get also) they can be very painful, did they check your potassium, magnisium and calcium levels. Any of these if low can cause cramping. Do you drink enough fluid(water) If your dehydrated it can also cause cramping. A simple blood test can give you your answer. If I were you I would see a speacialist a hepatologist and see about a transplanr. Do you have pulmonary hypertension? If not why are you on oxygen?

Please keep us informed and good luck.

My thoughts and prayers are with you,

Dee Dee

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