|Member Since||03/19/2012 09:59 AM|
|Last Online||05/18/2013 02:02 PM|
|Country:||United States of America|
|A little about me:|| I am a singer/pianist and poetry writer who used to perform professionally but my medical issues do tend to prohibit that ability because of fatigue and lack of coordination. However, I do continue to write poetry (some published) which helps me express how I'm feeling at different times.
I have cirrhosis which evolved from autoimmune hepatitis of unknown etiology, though at my latest hepa appointment (4/12), I was also informed that I have fatty liver disease as a contributor.
In my 30s, I was a vegetarian who commuted to work about 45-50 miles one way to the Hematology/Oncology Dept at OSU Hospitals. I walked in the wee hours of each morning before leaving, ran the hallway all day while there, and then when I got home, I power-walked up and down the street. I was in good shape and felt great. Then one morning it began to dawn on me that I didn't feel good anymore. I was unenthused about life and worn out. I figured it had to do with not eating much protein, so I began implementing it more back into my diet. Looking back, I believe this is where the trouble started.
Over the next several years, I believe things progressed until my marriage in 2003 when my PCP took routine labs and found elevated liver enzymes and sed rate. My PCP referred me to a GI doc who, when upon final diagnosis, sent me to my current hepatologist.
I also now have type-II diabetes; however, the diabetes was not the cause of the hepatitis as my blood sugars were normal upon diagnosis. The complications have consisted of hepatic encephalopathy, anemia, restless leg syndrome (RLS), esophageal varices, arthritis, and gastroparesis. I'm probably forgetting some things, but you get the idea.
I had never heard of cirrhosis evolving from anything other than drinking, but after my first biopsy, the doctor's PA-C looked me straight in the eye and told me my liver was like an alcoholic's and explained other ways it could occur. I laid awake that night angry, confused, and feeling sorry for myself but those feelings changed at the thought of possibly dying. Not that I wanted to die, but I am a born-again Christian, and to me it meant a closer future in Heaven with God. I explained to my specialist that I would accept whatever test or medication he prescribed, but I was also not afraid to die and would make preparations from that aspect too.
I had very little knowledge of cirrhosis, but after research and joining MDJ, I have learned a lot. I also have medical background and a general working understanding of the functions of the human body so I can absorb diagnoses more than the average person. Mine probably was in a compensated state for a long time before symptoms were evident, but I have tracked them back about 16 years and possibly longer.
Due to progression of the disease and symptoms, I had to leave my position as a legal secretary at the end of 10/2011.
I have two married grown children, one daughter and one son. By choice, my daughter and husband have decided not to have children, but my son and wife have been like rabbits! They have four children (3 girls, 1 boy) and though they had taken steps to abandon the idea of adding to the number,found themselves now expecting twin girls come June, 2012!
It gets pretty expensive, frustrating and disappointing on this journey with cirrhosis mixed with kids and grandkids, but God said His word would not return to Him void, and I have learned that when we rest on His promises, He is obligated and loves us enough to follow through. Sometimes He calms the storms of this life; other times He calms His child.
My Awareness Ribbons
"Gastroparesis, causing difficulty in absorbing meds and enjoyment of life."
"Diabetes is so common, but is misunderstood by the uneducated. I also have osteoporosis-- it needs a soft pillow!"
"Cirrhosis was the biggest shock since I'm not, nor have I ever been, a drinker. I'm always amazed at its effects on ADLs."
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|Well..it all went quick. I just got back from memphis a couple of days ago. I had all the test that i needed. I went to the meeting with the social worker the nurse and all the ones that I needed to see. The last day of test..I had to see the surgean. When he started talking to me I started crying. He told me that up to 2 weeks ago that my score would have been in the 20's..but now that the transplant team has decided to wait if the lisions were smaller than 2cm. mine aren't but 0.08cm. So they will keep an eye on them and check me out every 2-3 months to make sure that it doesn't get too large. I cried in his office..because they all had me thinking that I was going to be on the list. Now they will be calling me on Monday to let me know if I'm bad enough to get put on the list. He also said that there are more people that are sicker than what I am. It's like I have cancer..how much sicker can you get? I'm just really dissapointed. I have to look at it like..God has a plan for all of us and our life. I guess God just isn't ready. I have put everything in his hands. So that is where I'm at now. Back home in AR. and just going on with my life. I have to go back and see my liver doctor on the 21st of this month. I will see what he has to say.
My Health Topics Contributions
I started discussions in the following health topics:
Cirrhosis fingernail growth.
Cirrhosis fingernail growth.
hepatomegaly's photos are private
My Recent Posts
|Feeling Aweful when getting up...||05/18/2013|
|How is Everyone Else Making It...||03/28/2013|
|My dad has been in the hospita...||03/28/2013|
|Some Good News||03/28/2013|
|16 years and counting||03/28/2013|
|Finally a Court Date||03/26/2013|
|Back home from hospitals||03/25/2013|
|HE and general confusion||03/25/2013|
|Finally a Court Date||03/25/2013|
|Need Prayers again||03/12/2013|
|I am a 63 year old woman diagn...||03/12/2013|
|Patient Assumptions for Cirrho...||03/12/2013|
|What Questions Should I ask? ...||03/08/2013|
|how much % liver is damaged?||03/08/2013|
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