Most doctors don't tell their patients all the problems interferon can cause. If people are dingy enough to make health care decisions based on what a 'celebrity' says on Larry King, that's their problem.
I think she was very honest and upfront and everything she said was true. Not one person has told me interferon can cause kidney disease. Its something I am learning can happen through my personal experience with my kidney blood work so far. My Creatinine and Uric Acid have both rose since starting tx. I am very concerned especially after hearing what she said, and reading a post from someone else about kidney failure during tx. I get blood work done Monday and if these numbers are still on the rise I will be seeking out a doctor not related to the trial. They keep telling me not to worry about it. Makes me wonder if tx was the right choice for me?
As for bashing interferon, what do you want her to do get up there and lie. Its a awful experience as I am just now beginning to see 3 months in.
She spoke in such absolutes. sure, there are definately risks with this treatment.But it does not mean that interferon is not a good thing for alot of us. It has cured many people. An awful experience? ABSOLUTELY....I am hating it. But at the end of the day..I may be cured. I hate that she has experienced this, but I don't want people to be influenced that interferon is bad because it causes kidney failure. And, unfortunately, alot of people are influenced by celebrities.
I do hope you don't have any serious issues, Tippyclubb. Hang in there.
Jean
I'm not basing anything on what she said--was already concerned and waiting for my next blood work. Honestly, going into this I was not aware this could cause kidney issues. I thought I had done all my homework. Obviously not.
Hope you feel better soon.
I was under the impression from what I've read and heard her say in interviews that she had some unresolved kidney issues prior to starting tx. I'm sure treatment contributed to her unfortunate kidney problems now.
With Natalie, it's always been a play with words. I've haven't read any articles or seen any interviews where she accurately described or correctly termed treatment protocol.
Maybe she got enough negative feedback from previous statements that she over shot the Larry King interview. I didn't see it so have no opinion in that regard.
Trin
I'll be praying for you. Please let us know your results. The way I came into tx thinking was.. if anythings wrong on my body its possible it could be worse after. Ive had a few kidney infections, Problems with my ovaries, etc etc etc... So I am thinking long and hard "Is it worth it?"
to me it is...
I think it needs to be a law that your doc goes over things more completely with you. Mine acts like its no big deal and then the appt when I started tx he said " Im getting ready to hit you HARD"
Glad I had found this board and all of you. Without you all I would have known nothing and gotten completely surprised!
My heart goes out to Natalie. I am disappointed that she did not spend more time talking about Hep C. She could have really educated people and she did not do that. It is interesting, She does seem to be very educated on it. Wish she had used her status to encourage people to get tested.
"Makes me wonder if tx was the right choice for me"?
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Tippy- I am real sorry to hear you are having so many bad experiences with tx but what is the alternative. I started treatment 2 wks before you and maybe I didn't hear kidney specifically... I was aware that pretty much anything was possible with these drugs. I don't read or post on the forum very often but I happened to read today and was looking at your post and I was bummed... I thought we were going to finish this thing and be SVR at the same time.
I just want to encourage you to hang in there. Sometimes it is better not to hear what everyone else says or is going through...it makes my tx less stressful. I will be praying for you.
Mike
Natalie Cole is nowhere near the “sharpest knife in the drawer.”
hang in there hepatits in itself can cause kidney problems and increase risk of kidney cancer i have just finished tel trial 1 week ago and have done a total of now 4 years interferon in 11 years no kidney problems best of luck
Its not over yet, and by no means do I want to stop. However, I must take into consideration all the things that are going wrong, and seek out medical opinions from outside the trial. This is contingent upon my blood results next week. Hopefully, my kidney levels have not risen, my TSH level has come down, and the hgb is going up. We will see.
Its not about what others are saying, that causes me concern. Its the blood test results because those numbers tell the true story.
Good to hear from you and hope your still handling tx well.
Like Trinity, I've seen a lot of contradictions where Natalie's health was concerned but she is speaking out, which is a lot more than most celebrities.
I personally worry about not getting all the right labs. Is there a list of standard tests that all people on hvc on tx should be getting? Maybe I should make this the subject of a new post. (tomorrow, going to bed).
R Glass
Natalie Cole is nowhere near the “sharpest knife in the drawer.”
You hit the nail on the head. She obviously has a great gift but brains are not one of them. Larry King showed her emails of people offering to give her a kidney and she said if there was a match that the person offering "would have to wait until until she finished her current tour".
???? What. I could not believe she actually said this. Anyone would be and should be gratefull for a gift such as this. She acted like they will have to just have to wait because her tour is more important. Something is not right here.
Bobby
I love interferon/RIBA and Boceprevir....anything thats keeps my from going 6 feet under ,i respect....even tho ita tough med.
Ill sell her mine for 0ne million.
Not one person has told me interferon can cause kidney disease.
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This simply isn't true. NOT true.
My NP was very clear that interferon can cause kidney issues. In fact she said it was that uncommon.
Only thing is that she first mentioned this to me around week 40. LOL.
-- Jim
I never did get the "role model" expectation with celebs. There should be a law limiting their performances to their specific trade.
I must have been the only one that saw on the bottom of the screen that her kidney problems were caused by prior drug use
Why bother telling you at week 40? Did you have any kidney levels that were high when she told you?
I agree Jim. she really disappointed me in that interview.
and how about the "there are three ways to get hepatitis"??????? only 3? Please!!!
Jean
If I remember correctly, some blood values suggested possible kidney problems -- could have been elevated GGT, not sure. But the point was that often we only hear of the problems these drugs can cause after the fact. Did not end up with any kidney problems from treatment.
think real hard about this, what are your alternatives. I have had to change dr. during tx. It's really hard to find one that values your health as much as you do. I'm on week 6, and I know the fears,and the pain, but if you need it do it damnit.
mphillips: I must have been the only one that saw on the bottom of the screen that her kidney problems were caused by prior drug use
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I tend to believe what I read in this forum as opposed to validated outside sources. YMMV.
With all her millions....cant she get the PI drugs?