From Lou
Last night was the OOB support group and as usual it was packed. We are coming up on three years. I wanted to just tell a couple of stories I heard there that really threw me. First there was a young girl. She went to have testing done and before they even had the results a nurse practitioner said she had end stage liver disease and would die within two years. She switched doctors and hospitals and found out she had geno 3b and has no fibrosis and she has over a 70% percentage of clearing. Talk about bad info.
Then there was a man who did two shots, he vomited and they took him off of treatment. Which is definitely the worst thing to do. First they should have taken him off the riba and see if that was the problem. If not lowered his Infergen dose, but he has stage four fibrosis which they told him he had cirrhosis. Totally horrible protocol. The good part of these stories is we got them hooked up with a REAL HepC doctor.
I heard more bad and incorrect information today than I have heard at all the meetings I have been to and that’s one a month for over 2 years. Unfortunately most of this came from nurse practioners. Most of these people were brought by other members that have been members of our meeting for a long time. The real problem here is that if these people kept getting bad information it puts their life in danger. One girl went to the hospital in Boston crying because she was depressed and they told her that obviously she could not take the treatment. She came to our clinic and is now clear as the doctor put her on anti depressants and she made it through treatment. If crying means you cant make it through treatment I think all of us would have stopped!!! I cried when I saw puppies!!!
This is why we have support meetings and other reasons. But a knowledgeable patient is so much better off then those that just take the words of bad doctors and other people and there are plenty of them out there..
Several people decided to treat last night after the meeting. It might have saved their life. So my point is to learn. Be knowledgeable whatever it is. If you have a health issue find out everything you can and the better off you are. Doctors, and nurses, they are only consultants. Take one biopsy and give it to three doctors and you will get 4 opinions. Just the way it is.
Anyway, it is going to be 90 degrees here today. Too hot for me. Make it a wonderful day and a better weekend.
Lou, Co-host of OOB.org
