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Dream Weaver
New Member


Date Joined Jun 2009
Total Posts : 4
   Posted 6/17/2009 3:21 PM (GMT -7)   
WOW!! So many people, so much suffering.

I have cirrhosis and Hep C, mistaken diagnoses very common with this illness. First, I was diagnosed with Lupus. This was in 1990. Symptoms were mild and my weight caused me to have a swollen gut. I had swelling in my ankles, stools were light and pasty, and occasional vomiting and itching. The Doctor gave me darvocet for pain and told me I could take up to 2 at a time 4X a day!!. I was also given medicines for lupus. After years of suffering I decided to go somewhere else. The doctor I was assigned to was a real ding-a-ling!! She (YES, I DID SAY SHE) gave me a prescription for PREMARIN!! (a drug used to treat menopause) Since I was 50 years old and had a Hysterectomy, I figured that I had the right to go crazy. I yelled and screamed and danced and hollered and cried, and cried. If I knew that there was something wrong with me, why didn't the doctors know?

I then decided to lose weight. I went to another Doctor and, after a battery of tests, wouldn't you know that I was scheduled to pick up a prescription for Fhen-Fhen two days before the FDA took it off the market? But, He did say that there was a problem with my liver alts. and he wanted to do a follow-up.

Well I have had all I could take from NC Doctors. So in 2000 I went home to NY and saw a doctor from Albert Einstein College of medicine. Wouldn't you know that I had Hep C, Cirrhosis, ,diabetes, high blood pressure along with a host of other side symptoms. Then the biopsy........Stage 4. No cure for either, treatment is only for the symptoms not the diseases. I was then told that my liver would not last 6 months. So I decided to go back to NC so at least when I die my husband will at least be near is family. In 2006, I became very ill. I went to the hospital and met a gastrologist. When I was released from the hospital, I went to see this doctor. He has been treating me ever since.

I suffer a lot, over 20 pills a day, insulin and pills, inhalers, nebulizer, CPAP at night, severe depression. Oh I must not forget those fantastic shots!! It's only once a week that I have to give them to myself but in my case, they turn me every way but loose! Pegasys has it's own set of side effects and it affects different people different ways. In my case, fever, chills, wheezing, tiredness, and sometimes my temper gets so bad, I could bite a bull!! The pain and vomiting is getting worst and so is the depression. I know that this disease can be fatal, but I deal with it. Sometimes people think I am crazy because I laugh and make jokes about my situation. But, there is nothing else to do! I have to admit that some of my episodes are funny! I try to be as upbeat as possible. This way others don't feel uncomfortable around me.

Sunday I was all dressed up but I still did not feel good. One lady said ""Girl, you don't even look like you are sick." I gave her my signature sweet smile and said "That shows you what false hair, green contacts, false teeth and a wonder-bra will do." Everyone got very quiet for a second...........then they all started laughing!

I am saying this to all olf you. No matter what, keep your spirits up. Cry if you have to, yell if you have to. Eat some Chunky Monkey Ice Cream (all of it). Dance up and down the sidewalk (I do)


REMEMBER.......... EVERY PAIN THAT YOU GET MEANS THAT YOU ARE STILL ALIVE. Enjoy it!!


The Dream Weaver


For all things I have the strength by virtue of him who imparts power to me.
(PHILIPPIANS 4:13)

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/17/2009 6:36 PM (GMT -7)   

Dreamweaver, thanks for starting a new topic.  I took the liberty of deleting your other thread with no topic as it was a duplication.

Again, welcome to the forum.

 


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


Dream Weaver
New Member


Date Joined Jun 2009
Total Posts : 4
   Posted 6/19/2009 3:22 PM (GMT -7)   
Thanks Timeless!!

I never knew about the transplant team at UNC. I need to investigate. My doctor is @ ECU and wants me to finish the Pegasys first. Then he wants to contact the NJ Blood Institute to see about a bloodless transplant. I contracted Hep C. from a blood transplant almost 40 years ago. Started feeling ill 20 years ago, then got very sick in 1993. Today is one of my bad days. I slept all day (9 hours) and every muscle in my body hurts. I don't know if it's the virus, my liver, or the medications. I'll figure it out when I wake up.......... I am praying that we all cope with the insanity of this disease.

For all things I have the strength by virtue of him who imparts power to me.
(PHILIPPIANS 4:13)

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/19/2009 9:18 PM (GMT -7)   
Hello Dream Weaver and welcome to HealingWell. Laughter is great medicine.......and it's free.
So glad you have such a good attitude........

Good caring doctors are hard to find. I had a primary care physician for a number of years before I met my husband. I didn't have a lot of faith in him, but I could get right in with little waiting and he was a quick referral to specialists. After we got married my husband started going to him. He went to him for about 5 years and when my husband started getting sicker........he fired my husband. Told us that he could no longer be my husband's doctor.......but he could be mine........He knew all the responsibility for ordering all the testing would land on him. He didn't want to deal with it.... too much work.
So right in the middle of us trying to get my husband listed we had to find another PCP. I was so furious with him. He wouldn't even refer us to anyone. I lasted as his patient for about 6 months after my husband died........then I fired him and went to my husband's PCP that we had found.

Sounds like you have been through some doozies too.

We are glad you found us.......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.

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