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SD GRANDMA!!!

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Posted 1/27/2010 11:34 PM (GMT 0)
I received your e-mail and replied, but my e-mail to you came back as having the wrong address.  What you need to do is to start a new topic (click on New Topic at the top of the Hepatitis page) and introduce yourself and your problems.  You posted on someone else's thread.  I did welcome you, but I don't recall which thread it was. 

I hope you understand and that we will see a new thread from you soon!

Hugs,

Connie

Posted 2/5/2010 7:19 PM (GMT 0)
Thanks Connie!!! Have been doing alot of dr. appts. last 2 weeks......Thanks for your help & we'll chat soon
Posted 2/5/2010 10:43 PM (GMT 0)

SD, please start a new topic soon and let us know about your doctor visits and how you are doing!  Thanks for posting!

Hugs,

Connie

Posted 2/11/2010 4:58 AM (GMT 0)
I am a 52 yr old grandma,mother and wife. My husband & I own a small business selling stoves<fireplaces, in the hearth industry. My husband 7 i have been married for 31 yrs ( 2 son's 1 grand daughter 1 Grand son). We come from families that have been moderate drinkers for as long as I can remember. No DUI or warnigs from health pros. Not that that really matters at this point. As my Grandma used to say.... it is what it is. Istarted having pain on my right side (rib cage) and throbbing pain in upper middle back almost 3 yrs ago. Dr. couldnt find anything wrong---Stress long hard hours and getting older. Knew something was really wrong when asicites started. Then no appitate vomitting weakness and vision problems. Had always been om bp drugs but stopped takeing them when pressure readings where dangerously low.Then on Jan. 2nd 2009 my body just quit. Jaundice, delirious all vital signs wacked out. Pulled through and was sent home with the alchol cirosis. 18 meld score and was put on a transplant list although I was told that tha medical profession didn't honor "drinkers" so be prepared not to get one in time. And here I am 1yr later.90 lbs on a good day, atrophy so bad I look 15 yrs older and right out of the grave and pain and confusion occuping my days. Can no longer run my business after 20 yrs and the burden on my husand & are more than I can bear some days. I was looking for someone to chat with and try to regain some sanity when I found this site. Please let know I am not alone.
Posted 2/11/2010 2:59 PM (GMT 0)

SD Grandma, I am sorry to hear how sick you are! You said your on a transplant list, the only time medical prof. dont HONOR drinkers is if you are actively drinking. Part of the labs will include random drug and alcohol testing, this is done even if you dont have a history of either. UNOS is the ones who make the match based only on meld, blood type size and age, as long as you are clean and sober. Of all the people I met at our center and group meetings only 2 were not related to chemical abuse. So I dont understand why you were told that. Different areas are more difficult because of availability. New England the average meld is high 20 to mid 30 meld and some areas it can be low 20 ask your center what the usual meld is. Hang in there and take care of yourself you still have a chance, you can also opt for a B list organ which has a slightly higher risk after but still has a good prognosis, my husband was on both lists.

Sue

Posted 2/11/2010 7:07 PM (GMT 0)
Sue, Thanks for responsding!!!! I don't want give you the impression of my situation so I'll further explain a few things as best as I can. After the diagnosis and healing from the "incident" ( Istill don't know the term for what happened to me) I stared wtih a GI whom we really like. AA was sugestted to recieve a liver asap, which they thought I would be back in about 6 months. I really don't have a problem with AA and I know if you drink every day for more than 10 years your are an alolcohlic. Welll i've not had a drink for 14 months and wonder now why it seemed so important all these years! Anyway, I'm now available for a transplant, but have been unsure whether I want one or not. Leaning more towards not. Right I'm able to take care of myself. Some issues have come up that i'm seeking answers for. My bloodpressure is sky high with TERRIBLE headaches. ER ran chest and lung scans looking for clots as I have been hospitalized with DVT since my diagonosis. Also encephalopathy is also a problem.

Have yoou heard of a program at University of Minn. on stem transplants(?) for yhe pancrcreas? An assoc. of ours is going there for this posiblity. His bile ducts have been blocked for 2 yrs. He has had a feeding tube for at least 1 yr.

It feels good to chat with someone who knows what a horrible and complicated diesease this. I can't thank you enough for finding me.
Posted 2/11/2010 9:25 PM (GMT 0)

SD Grandma, thanks for starting your own thread, as I had suggested.  It sounds like you are on a transplant list and it's just a matter of waiting.  Have they done all the evaluations?  Is there a reason you can't take medicine for your BP or are you already on it?  If you are on BP med and it's not working, they can change it.  I've had mine changed several times.

So you did the 6 mos. of AA meetings or are they not requiring that of you?  Sorry for all the questions, but I'm not clear on a couple of things.

I'm glad you are posting, as you will get a lot of info and support here.  I know that they are doing stem cell treatments for a number of issues now, but it's still in the very early stages.

Hugs,

Connie

Posted 2/11/2010 10:59 PM (GMT 0)
connie,

I am on 80mg of diovan and start norvac tomorrow. Was on bp meds before this all happened. I didn't go thru the 6 month aa program and am told by dr that since my husbsand & I are unsure about a transplant that we have put the list on the backburner. I'ts our undertsanding that if I get that sick again and since 14months w/o alchol I would get a liver if we wanted. I sure hope we are getting our info correct. My husband is my sanity most days so I hope he's paying attention. Funny, I never thought I'd need him to remind me of things...Ha Ha

The bp and encephaopathy and headaches are my concerns for now. Iv'e read enough of everyone elses to get some of my ?? answered.I guess I'll start the flucatose although I've been dragging my feet. Here's a question I can't get any answers for.. my blood test keep showing an elevated c something cancer gene that seems to be in my groin area which is interesting ad i had a complete hysterectomy at 24 yrs old.

I didn't realaize I statred my own thread! Learning as I go!


julie
Posted 2/12/2010 1:39 AM (GMT 0)
sd grandma,
Don't remove yourself from the transplant list. My MELD scores were from 12-17 for years. Then, it went to 18. I figured it would be years before I'd actually have score high enough to receive a liver. Within a week I jumped up to 24 and a couple of days after that had a transplant. If your score never goes above 18-20 and you're getting along, no hurry. But if you need one in a hurry, it may be too late to get back to the top of the list. Just my 2 cents. Good luck. **David**
Posted 2/12/2010 3:21 AM (GMT 0)

Julie, I agree with David on this.  You don't want to suddenly go into a downward spiral and not be able to get a liver because you were taken off the list.  Believe me, when people are facing death, they will usually do anything to stay alive!  I would also double-check on the AA requirement.  You wouldn't want to be denied a liver on a technicality. although 14 mos. is a good amount of time.  Suppose they want proof?

The Norvasc should bring your BP down.  I was on it for quite awhile, but when I started having rapid heart rate, was changed to a beta blocker.  Your high BP could be the cause of your headaches.  If you don't get it down, you could have a stroke.

"I guess I'll start the flucatose"

Do you mean Lactulose?  I didn't find a drug with your spelling.  Lactulose or its equivalent will clear up your confusion.   Try to make sure of the spellings and dosages of the drugs you take.  This could save your life in an emergency.

As for the cancer marker, I'm not sure.  They use AFP (alpha-fetoprotein) as my cancer marker, although it wasn't really high even when I did have cancer. 

Hugs,

Connie

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