Just my 2 cents :-)

[Guest guest]

Hi All. Just glanced quickly at a few digests and have to type fast. Took a sleeper as I have a Health Fair to do tomorrow and I need to go to bed. (an hour ago actually)

Someone mentioned this to me so I wanted to say that when I shared "my story" that was all I was doing was sharing my experience. Didn't mean to "scare anyone" away from treatment. None of us reacts to treatment the same and I have many friends that worked through the entire treatment and are now 8 to 10 years clear - including a 70 year old lady that got energy from interferon and went out and took up tennis. Please don't let my "flukey ICU story" scare you. That was WAY BACK in 1999 with the OLD three times a week treatment and no rescue drugs and previous Interstitial Lung disease and previous Legionnaire's disease and many previous lung ICU hospitalizations. Things have changed for the better with treatment! Treatment IS doable!

Don't know who posted about not wanting to eat and I am glad so many posted about the importance of eating while on treatment but I never saw the two most important words - BOOST AND ENSURE! If you can't get anything else down - at least drink one or two of those every day!! I couldn't eat much of anything and survived on 's Frosties and Ensure. Gained weight on treatment! I am sure because of the Frostie's. Bought them by the 6 pack and kept them in the freezer. LOL Couldn't stand the smell of most any food :-(

I don't know what the toothbrush conversation is about so I will stay out of it. We all know not to share any types of personal items.

Was glad to see that someone posted that interferon and ribavirian are EQUAL in the side effects they might cause. One isn't worse than the other. *We* do call the mood swings "Riba rage" which is odd because Gloria is right that it is caused by the interferon. It is just a name that was started years ago and has stuck. When blood counts get low, doctors will often decrease either interferon or Ribavirin until they come back up. Statistically, if you do 80% of treatment then you do have the chance to clear - so if you have to cut the meds in 1/2 once in awhile that is all right but it is the *back woods docs* that have patients stop completely for a few months and then start up again, then start, then stop, that are doing it wrong. Our *tricky smart virus* has then figured out how to mutate and get around the interferon and ribavirin and won't work as well the next time it is started. It is better to just reduce the dose.

Jen - I have a dear friend that heads up a support group in Nashville. Would be glad to get you info on who are the best hepatologists there because you do have many to chose from (good area to live in!) I hope that you are able to get to her support group sometime. Send me an email at figment@... and I will put you in touch with her :-) I did want to mention though that if you were only on week 3 of treatment and your platelets were already down to 50,000 then it is quite possible that you are not going to be a candidate for treatment. It is doubtful they would drop from normal to 50 in just three weeks but as Teri said it would be good to know your entire CBC before anyone could really comment. Many people are not candidates for treatment for a variety of reasons and low platelets is a "biggie".

To whoever was worried about a transplant - don't be! I have been through the entire process with many many MANY friends now, nursed several back to health post transplant and many are now 8 to 15 years post! Don did give you the link to a really good transplant support group on . Tell KathyBoo hi from me. She has good info. While it is a big decision and a big surgery, they have truly "perfected" it over the years. The biggest worry is whether a liver becomes available since statistically 2/3 will die waiting because of the organ shortage so I remind everyone to PLEASE SIGN YOUR ORGAN DONOR CARDS and YES YOU CAN SIGN THEM if you are Hep B or Hep C positive. They are only used on other Hep B and C positive patients. The CDC has some bad information on their site about that. We can't donate blood, of course, but we can donate our organs! I really didn't see what the situation was other than that the doc "scared you" and I am sorry to hear that because he/she should have been more upbeat and positive about liver transplants if you are, in fact, approaching that stage. It does take many years to get from beginning compensated cirrhosis to end stage decompensated cirrhosis but never too soon to get your "foot in the door" at a transplant center. At least they will have a chart started for 5-10 years down the road if and when you might need one.

OK - that was all I saw. Maybe next week I can start reading the digests from many of the groups a bit closer. I am still overwhelmed from being gone on my DC and Atlanta trips and having so many emails just starting at me say "Me, Me, Read Me!" Can't get them to stop talking quite yet. Makes it hard to hear the TV LOL

Take care all! I hope to educate MANY tomorrow and hope that at least a few will make some donations. After all, HEALS is tax deductible! I think I am going to sell $1 tickets to *win a Hep C Tshirt* and see if that garners any interest. Am afraid that many won't want Hep C Tshirts but that is all I have. This Health Fair sprung up on me too quickly and I didn't have a lot of time to plan so I can't even do testing at this one :-( I prefer doing free Hep C testing at Health Fairs. Maybe at the next one.

Good night! Sure hope I fall asleep fast!

Peace

Pam

www.HEALSoftheSouth.org

www.myspace.com/figmento

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[ ] Digest Number 3479

There are 25 messages in this issue.