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Pallie48's Story
Pallie48's Picture Once upon a time there was a woman who was enjoying life, raising teenage sons, loving her husband of twenty some odd years, working 4-5 days a week at her regular job and 3 long nights a week co-managing a night club with her husband. Life was great! She was busy working, making new friends; partying and loving ever second of life...well except being so tired from all the work.

Being a vain person as far as appearances, this woman had her nails done regularly at a salon in the latest french manicure fashion. And she also painted he toenails, after all one must look great when shoes are absent.

Well, the lady had a toenail fungus that yellowed her large toenail and there had been much advertising for a new treatment for nail fungus that really worked!!! So, she immediately went to the doctor and indeed the doctor diagnosed her with a nail bed fungus, very common but very hard to treat, but fortunately they had been having great luck with this new medication. So, feeling great about it all, the doctor preceded to explain that this medicine has been known to elevate liver enzymes and could cause possible liver damage.... so he ordered a blood test to check the levels. And much to everyone's surprise the enzymes came back.... really, really high...alt 689 and ast 365.... so, what does that mean… probably just high as a result of alcohol, so lets stop drinking for two weeks and repeat the test... .well, while this cramped her style of having that going home drink at the bar and put a real crimp in her week end fun, she agreed and followed instructions and went back for another blood test...still high, so lets not drink for a month and repeat the test...okay okay, Now this lady was getting pretty thirsty for a beer by this time, but understood the importance of the tests, there had to be a reason for the elevated enzymes....and she was sure it couldn't be serious cause she felt great! (Well, except being tired all the time).

Well when the next set of blood tests came back still high, the doctor started running hepatitis tests. Now, this gal was sure this was a waste of time....she'd never had yellow eyes, and knew that would be one test she'd pass with flying colors. The doctor even scheduled a sonogram of the liver and it passed with flying colors. After waiting what seemed like endless days, she finally called the doctors office and asked the nurse about the results. The nurse scanning the files told her that her "A" was negative....her "B" was negative....at which time she said well, see there, I told you I didn't have hepatitis and with that the nurse replied but...wait....your "C" came back positive. Never had this woman heard of hepatitis C....what is that.....? And the reply was...you'll have to talk to the doctor about that… But of course, she should have known better! The doctor of course wasn't available, so, she had to have information immediately...so she called her brother in law, an attorney that specializes in medical cases and asked him. He had heard of it but wasn't well versed and said he'd obtain some information from the Internet for her. Later that evening she picked up a huge stack of papers and as he handed them to her, said, it isn't good!

After reading the papers, tears streaming down her face.... she sobbed to her husband that she had an incurable liver disease that sometimes led to cirrhosis and/or liver cancer. She felt she was dying and proceeded to fall into a depression.... stayed at home and slept or cried.... couldn't tell her mother or friends.

After a few months of crying and wallowing in self pity, she decided to get on the computer (which scared her to death) and find some information. By this time she was mad, how could this happen, why did this happen...you know the story! And by a stroke of luck, she found the Sapient Health Network, and more information than a person could absorb in a lifetime. She found stories of people who had hepatitis and message boards where she asked questions and finally, got enough nerve to go into a chat room. Well, that was by far the best move she'd made. She found compassion, understanding, a new family that understood exactly how she felt and helped her cope. Told her what to expect in the days, weeks and years to come. She met with these people everyday, learning more and more and slowly coming out of the depression. She met and greeted new people in the chat room, they came everyday, more and more people and they all needed help, just as she had.... she felt great being able to help calm some of the fears of the "newbies". And she actually started to believe that she'd live a lot longer, and probably die with the disease, not from the disease.

Then the next hurdle was deciding to have a biopsy or not to have a biopsy. Knowing full well that if she wanted to know the shape her liver was actually in she'd have to have one. But she put if off for a full year and watched her diet, cut out caffeine, quit drinking and tried just about anything she'd heard of that might work.

As luck would have it, the woman needed to have a hernia repair surgery and it was suggested to her by her oh so intelligent husband that perhaps the biopsy could be done at the time of the surgery and her surgeon happily informed her that he could indeed do it at the same time.

Surgery went well for the woman and there were no complications from the biopsy. When her doctor spoke to her in the recovery room she was able to ask him what her liver looked like...to which he replied it looked good, good color, shape etc. Now this was great news and her spirits soared. The next task was to wait for the biopsy report.... not an easy thing to do for this woman and when the doctor didn't call and she got tired of waiting she called and talked to yet another nurse...who said that yes the report was back, the doctor wasn't in as this was a holiday weekend coming up but she could read through it briefly. And the nurse, in a hurry to get home, promptly replied, I don't understand the wording but it says you have cirrhosis... with that she said to call back and make an appointment.

Now you must understand that she wasn't prepared for that report at all. She was convinced that the report would come back good and that she'd have plenty of time to wait for the CURE to be found. Now she didn't have time and she once again fell into another depression. At least this time she admitted she was depressed and asked the doc for some help in that direction. But the dark cloud remained and she racked her brain trying to figure out how she got this damn disease in the first place. She had believed it was from the nail salon that she used to go to, she had in fact quit going to the salon because they kept nicking her cuticles and causing her to bleed and it was painful. Not knowing about hep C and it's transmission, she'd never given it a thought at the time. But that was only a couple of years and she had cirrhosis so perhaps it was from the tattoo she had gotten about 5 years prior to the diagnosis but her husband had received one the very same day and he was fine...she thanked God that his tests had been negative. So, then it must have been the tattoo she'd gotten when she was 23. Then like a drowning person whose life flashes before them, she remembered the few times she's experimented with drugs when she was 21 and had even used needles a few times. She was sure they had taken the proper precautions... never using the needle before it had been sterilized… but by now, she didn't know how she'd gotten it and didn't care....she had it and now she had to go to a liver doctor and get treatment, knowing full well that she'd be giving up more of her life as she knew it. For a year of what proved to be days, weeks and months of endless headaches, aches, and tiredness. So much tiredness, she had never been so tired for so long in her entire life. Thank goodness for the anti depression medication cause the poison they give you causes depression in a lot of people.

She saw the gastro and told them the course of treatment she wanted. She had read and talked with others in her support group about treatments that were available and told them she wanted to do daily doses of infergen at high dose for 3 months then cut back to a smaller dose. But all she got was that it wasn't the treatment course that was being recommended at the time. She knew full well that many were trying this but could not get them to change their mind, while they were all the time pushing the combination therapy that they felt was having the best results, statistically speaking. Being a strong willed person and knowing that if all they offered was the "combo" she didn't want it! She'd do no treatment at all in that case. Well, they said sure, you can do infergen if you want.... so with the game plan in mind, she had to settle for doing small doses three times a week. Three times a week, pushing needles into your stomach only to make you sick and tired for a year proved to be quite a task in the months ahead. Years usually fly by quickly, but that was the longest year of her life! There were a few high points in that year...The doctors thought the biopsy report that she had received had too many inconsistencies and asked her to allow their pathologist to examine the specimens and she indeed gave them the permission and obtained the specimens and turned them over to the new doctor....but, not before opening the packets despite the warnings to NOT open! She was surprised to see the little wormlike pieces of her liver. She had looked at hundreds of pictures of diseased livers and these sure didn't look like those. And in fact the new report said there was no cirrhosis! Now, she was a happier person, much happier than she'd been in a long time. Then the three month blood tests that showed she was responding to treatment and the one at 6 months that showed she had no viral load.... well, she was ecstatic to say the least. It helped get her through the next six months. But, at the end of treatment, there was again a viral load.... she was labeled a non-responder. Down again! Disappointment flooded through her veins as quickly as the virus. So once again she had to reach down in the depths of her soul and pull herself up. She rationalized that she had given her liver a rest, she had reversed some fibrosis and had bought her more time....time to wait for the "CURE".

So today, this woman, waits patiently with her online family and her angel of a husband. She will never forget all she gained from this group of people...some with a face, some with a voice, some with just a typed word. She cries for the loss of some of the most courageous people she's ever met, which lost the fight. She tries to stay strong for those that are suffering and waiting for a liver, waiting to get sicker so they can be put on a transplant list. She tries to give encouragement and support to those she's come to know and to the new ones that arrive everyday.

Now, her next fight will be to stay strong and healthy while she waits for a cure.......

and lives......happily ever after.

well not quite... .the woman as you may have guessed is me, Pal, 48 years old. I was diagnosed in Oct. 97. You've read my ups and downs. I finished treatment in March of ' 99 and my liver functions remain in the normal range and as their is some controversy as how to re treat people whose liver functions are normal after treatment, I remain steadfast and will refuse any further treatment. I can't help but HOPE that there will be a cure in the near future, or at least a decent treatment course, that won't cripple us, and one that will be more effective. Until then, I'll wait, try a few things to help the aches that still plague me... .the tiredness that doesn't ever seem to quite go away....

I'll light the candles, cross my fingers, wish, and hope....

Pal obz97@famvid.com

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    Page last updated: March 7, 2003


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