It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Hepatitis Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 03-25-2006, 07:00 PM   #1
Junior Member
(female)
 
Join Date: Apr 2003
Location: norcross, ga
Posts: 30
christine307 HB User
End Stage Liver/Hep C only 29...just found out

I have been sick for quite a while. Really sick and over the past two years or more it has been getting progressively worse. I dont have health insurance...So suprise suprise, everytime I went to the ER with something they told me I was fine. One Doctor told me, I dont know if you have "cancer" go see your pcp. I had pitted Edema another time and the doctors gave me aleve (naproxen) and said "you have Edema".

Basically in last April it got to the point where I couldnt work. I was throwing up in the trashcan at work. Constantly having to leave. I was in severe pain. My stomach was swollen out as if I was pregnant with twins. Even these symptoms with the edema the ER turned me away. I had to quit working, after attempting part time, but still throwing up and so sick it just wasnt working. The only "dr" that would see me at "half" price was a kineselogoist, who said he would charge half price. This still turned into about $200 a week. He took guess' bascially at what was wrong. I feel like he took me for a ride really. Anyways I was tired of going to hospital after hospital and being turned away. So I laid in misery not knowing what was wrong with me. In Jan 06 I turned yellow. My partner told me I was yellow but I thought she was comparing her red skin to my pale skin, so she thought it was yellow. But Dr. G told me the same thing so I went to the hospital. All the sudden they paid attention. I had the big red flag up, look guys she is yellow, isnt that...jaundice??? Yes everyone knows what jaundice is, so they took me seriously. I was basically almost dead. My blood pressure was really low. I went into liver, kidney and heart failure. I had fluid in my lungs, was on oxygen the whole time I was there and when the doctors would talk about the Cirrhosis they just shook thier head saying "29 years old with liver disease, usually seen only in 70 year old alcoholics". I was admitted for two and a half weeks the first time. They told me I had Cirrhosis right off the back pretty much. The kept pressing me, trying to get me to say I had been drinking hard core whiskey. I told them I drank, but not like they were saying. I told them yeah, sometimes I felt like crap so I drank more but I didnt NEED to drink and such. After all these tests and a biopsy and several transfusions and fluid removal, etc. they tell me I have Hep C. They released me from the hospital, how they did I dont know. I was out of my mind because of the Amonia in my body. I dont remember most of the hospital at all really. The doctor just said, you know you have severe liver disease right? I said yes. Then he said you know your blood is really bad right? I said yes. With that they let me go.

I'm on Lactalose, Aldactone, lasix, protonics, previcid and synthroid. This doesnt include my previous medications which are xanax and methadone.

I had a follow up appointment with the GI Doctor, Liver Doctor. She is the one who after several questions told me I had end stage liver disease and without a transplant I would die. She didnt even refer me to the Emory Transplant Hospital because I wasnt approved for medicade yet. She said she doesnt deal with pain or anything else. In fact, she didnt even touch me. She told me I need to get a PCP and a Pain Specialist. She only gave me stomach medicine and more Lactalose. I also gave blood.

A week later I was back in the hospital. I had since lost 80lbs water wieght. My first hosptial stay they took 3 IV bags full of liquid out of my stomach. They had me on high amount of diuretics and so forth. Well I was in the hospital another 3 days. They said the reason is because they were stripping my body of the medications (methadone/xanax) causing withdrawls and malnurished because of loss of medicine and minerals from the diuretics. They kept me on fluids and a low fat diet. They thought they were going to have to remove my gall bladder but some test denied that. Hospice became involved, but just to give me information or make final decisions on tests and so forth. I guess on whether I needed them or not. They told me I would need a kidney transplant as well. This worries me too because I have seen the requirements for donor lists and other organ problems could disqualify me.

I have just been approved for medicade, but no one seems to be moving thier a$$ so to speak. I called the liver doctor because she needs to refer me to the transplant area, now they want a PCP to refer me to them because of medicade...I was referred to them from the hospital. So I guess I have to back track, get a PCP, get re-referred to that liver doctor (or another because I think the lady is a rude jerk) and so on. I guess here are my questions after my long winded explanation of what is going on...
1. Alot of you are on liver medications, I dont understand why I havent been put on any...
2. I havent been informed of what stage of End Stage I am in. From what I hear there are three different stages???
3. I havent been informed of my LFT levels or whatever those levels are you guys are talking about. Obviously they are monitoring them when I get blood work, but I dont understand why they arent telling ME what is going on....

Also I am experiencing numbness in my upper legs, sharp stabbing pains and stinging...sometimes they feel like they are on fire. I'm having a hard time with my bowel movements, I am on a high dose of lactalose, so that isnt helping me. I have frequent headaches and sleep constantly. And my sleep pattern is all messed up. I sleep 6 or 7 hours, up a few, sleep more. I am always tired, worn out and really havent left my bed in a year.

Any feedback or information will be greatly appreciated sorry this is so long, I wanted to give you the full picture so I can get good feedback. I thank you guys for taking the time to read this. Thanks.

Christine

 
The following 2 users give hugs of support to: christine307
luyingjie (01-25-2012), Rigel99 (01-06-2012)
The Following 2 Users Say Thank You to christine307 For This Useful Post:
gino1995 (10-15-2012), luyingjie (01-25-2012)
Sponsors Lightbulb
   
Old 03-26-2006, 08:19 PM   #2
Junior Member
(female)
 
Join Date: Apr 2003
Location: norcross, ga
Posts: 30
christine307 HB User
Exclamation Re: End Stage Liver/Hep C only 29...just found out

please reply!!!!...i know its very long but i am scared and need some feedback

 
The following user gives a hug of support to christine307:
luyingjie (01-25-2012)
The Following User Says Thank You to christine307 For This Useful Post:
luyingjie (01-25-2012)
Old 03-27-2006, 09:48 AM   #3
Inactive
(female)
 
Join Date: Nov 2000
Posts: 692
thanbey HB Userthanbey HB Userthanbey HB Userthanbey HB Userthanbey HB Userthanbey HB Userthanbey HB Userthanbey HB Userthanbey HB Userthanbey HB Userthanbey HB User
Re: End Stage Liver/Hep C only 29...just found out

Quote:
Originally Posted by christine307
please reply!!!!...i know its very long but i am scared and need some feedback

Resources for information on cirrhosis (advanced) has been discussed in fairly great detail in other posts very recently.

I urge you to read through all the posts and come back again with specifics on what you are needing in terms of information. No one here is a physician or a liver specialist and the explanations you are looking for really should be provided by a physician with your personal medical information and test results in front of him/her.

Educate yourself by going to IMKINDLY's message boards advanced liver disease (you can find linkis on the web*log at the site below my name) and then get back in touch with the physician or show up at a University Medical Hospital and insist on being seen. It would help if you got copies of your labs first.

Please try to understand that I try to provide general information about the questions asked here but I am unable to provide anything like medical advice.

You are asking the right quesions. Now, let's get you to someone who can answer them with meaningful information.

thanbey

 
The Following User Says Thank You to thanbey For This Useful Post:
luyingjie (01-25-2012)
Old 03-31-2006, 01:55 PM   #4
Newbie
(female)
 
Join Date: Jan 2006
Location: USA
Posts: 5
Boening_l HB User
Re: End Stage Liver/Hep C only 29...just found out

Wow.. I am 37, and had been diagnosed with hep C 10 years ago.. I failed the interferon treatment back then, and have not had any treatment since. My doctor basically said there was nothing they could do for me and goodbye. So, I took that as there is nothing left but wait to die? However, there is now newer treatments available, but I do not qualify for prescription assistance, and my insurance is good but not great, and my income still is not enough to cover my portion of what treatment would be..So, I wait..

I, like you, have had pitting edema in my feet, swelling in my hands, nausea, and shortness of breath even with the tiniest bit of activity, and weakness..I can barely make it through the grocery store.. I sleep all the time, and try to sit with my feet elevated to help with the swelling.. I told my husband that I was sure my swollen feet and hands, and extreme fatigue were all related to my hep C, but he just says I should go to the doctor... For what? I just dont see why I should go to the doctor when I cannot afford treatment, and there is nothing they can do anyway..

I am sorry I don't have any answers for you..I just felt like we had something in common.. Take care.

 
The following user gives a hug of support to Boening_l:
luyingjie (01-25-2012)
The Following User Says Thank You to Boening_l For This Useful Post:
luyingjie (01-25-2012)
Old 03-31-2006, 08:15 PM   #5
Inactive
(female)
 
Join Date: Nov 2000
Posts: 692
thanbey HB Userthanbey HB Userthanbey HB Userthanbey HB Userthanbey HB Userthanbey HB Userthanbey HB Userthanbey HB Userthanbey HB Userthanbey HB Userthanbey HB User
Re: End Stage Liver/Hep C only 29...just found out

Quote:
Originally Posted by Boening_l
Wow.. I am 37, and had been diagnosed with hep C 10 years ago.. I failed the interferon treatment back then, and have not had any treatment since. My doctor basically said there was nothing they could do for me and goodbye. So, I took that as there is nothing left but wait to die? However, there is now newer treatments available, but I do not qualify for prescription assistance, and my insurance is good but not great, and my income still is not enough to cover my portion of what treatment would be..So, I wait..

I, like you, have had pitting edema in my feet, swelling in my hands, nausea, and shortness of breath even with the tiniest bit of activity, and weakness..I can barely make it through the grocery store.. I sleep all the time, and try to sit with my feet elevated to help with the swelling.. I told my husband that I was sure my swollen feet and hands, and extreme fatigue were all related to my hep C, but he just says I should go to the doctor... For what? I just dont see why I should go to the doctor when I cannot afford treatment, and there is nothing they can do anyway..

I am sorry I don't have any answers for you..I just felt like we had something in common.. Take care.
The most important reason to see your doctor is to find out what is causing your symtoms. Whether or not it is HCV related, and it may NOT be HCV, there are strategies for the symptoms.

Please listen to your husband and see your doctor. Most of your symtoms can be successfully treated, for example even without the interferon treatment and, that could be enough to improve your quality of life considerably.

I hope this helps and you are feeling better soon.

thanbey

Last edited by thanbey; 03-31-2006 at 08:18 PM.

 
The Following User Says Thank You to thanbey For This Useful Post:
luyingjie (01-25-2012)
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
please help 29 w/ hepc and end stage cirrhosis many ???? christine307 Liver & Pancreas Disorders 16 08-08-2008 07:38 AM
Aunt with stage 4 prdrmewf Cancer: Colon 9 12-30-2007 06:34 PM
Husband with new Dx stage 4 colon cancer ronda88 Family & Friends of Cancer Patients 15 11-19-2007 08:14 AM
My sister has Stage IV colon cancer karma07 Cancer: Colon 25 10-16-2007 08:59 AM
Stages of End Stage Liver Disease? WannaBeFreeToRoam Liver & Pancreas Disorders 11 09-02-2007 03:02 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



thanbey (424), sean (177), LOST1 (107), Wes1212 (86), Jemah (71), joann jennings (67), churchkp (58), eyesworld (55), glo53 (54), jessy28 (52)

Site Wide Totals

teteri66 (1180), MSJayhawk (1004), Apollo123 (904), Titchou (847), janewhite1 (823), Gabriel (759), ladybud (754), sammy64 (668), midwest1 (668), BlueSkies14 (610)



All times are GMT -7. The time now is 03:46 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!