I'm watching her with Larry King. She is really bashing interferon. Not a very good advocaate for todays soc....I really wish she would not blame the interferon so publicly. Just because she had some problems does not mean everyone does. I knew upfront that this tx can cause kidney issues in some folks. She is talking like "the doctors don't tell you...." Whats up with her?
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.
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.
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.
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"?
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.
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).
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.
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
I tend to believe what I read in this forum as opposed to validated outside sources. YMMV.
Probably not for sale and btw a misconception exists that celebs treat with the best doctors. In some cases they certainly do, but some get attached to "celeb docs" whose credentials are more in the area of catering to overblown egos as opposed to good medicine. I'm not saying this is the case here but it's not that uncommon. For example, some of Anna Nicole's docs didn't seem to be more than pill dispensing machines.
My doctor not only didn't tell me about all the side effects, but she bulked at discussing the issue when I brought it up. Her only statement was very few of her patients suffer sx's and that "they" would take very good care of me then raced out of the room.
Tippy - I hope everything goes well with your blood results. I'll hold you in my thoughts with sun shiny days headed your way : )
Interesting thread. I didn't see/ hear the interview. I didn't see this little bit of information in the thread so i thought I would include it in.
I sometimes think that we judge other infected people kind of harshly. People who populate boards tend to be quite a bit more knowlegable than the general HCV populace; ....and it is common that we are disappointed when they speak.
Personally, if she has a tour; what harm with completing it? Imagine if she decided to call it off; refunds, complaints from angry fans claiming she could have waited.
So far as the "fans" go they are always obsessing one way or another. She's just one more person with HCV; she does have an impressive podium though. ; )
How would you respond to a person who posted here who started TX and ended up on dialysis for life? We all "roll the dice".
"LOS ANGELES -Natalie Cole's fans want to give her a kidney. The 59-year-old singer told Larry King on Tuesday that she was diagnosed with kidney failure, and while she was till on his CNN show, dozens of viewers wrote in offering to be tested as possible donors.
Without a donor kidney, Cole says she will be on dialysis for the rest of her life.
The daughter of Nat King Cole said she was diagnosed with hepatitis C in February 2008. Her kidneys failed after treatment and she has since been seeking a donor."
Didn't see it either, but i would hope my ego would never get so big that people would offer me a gift of life and i would be more worried about going on tour. Something she can do at anytime. People that offer to donate their organs should not be taken lightly.
I wonder if she takes a turn for the worse which will be more important??? One should never look a gift horse in the mouth.......... Just my thoughts.
I agree with you. The whole interview just did not seem to bode well for advocating hep c tx. I think with any disease, you should arm yourself with as much info as possible before injecting any kind of drugs into your system. Doesn't sound to me like Natalie did any research. Just depended on people to "tell her". If most of us had done that, we may not have made it through treatment. I really appreciate how this board has educated me and helped me tremendously through my tx. Now at wk 36, I think I see a light at the end of the tunnel. i could possibley be cured and wish this for everyone with hep c. That is why her interview offended me. She spoke in generalities, and NOT everyone is goind to have kidney issues. We are all different.
And yes, if she is given a kidney, she should take it then, and BE GRATEFUL!!!
She has the right not to be a poster-child for HepC or tx or whatever she wants. In fact, considering how uninformed she apparently is, that's a good thing.
As to quitting a tour . . . she's a performer--it's what she does. She has made a commitment to the ticketholders and promoters etc., and as much as I'm sure she'd love to come off dialysis and all that, she's honoring her relationship with her fans.
I didn't watch the interview so I have nothing to say about it, except. The only thing I've heard that makes any sense is:
Natalie Cole is nowhere near the “sharpest knife in the drawer.” poor lady, she has to go thru all that tx and doesn't seem to know much about it. I can only guess that her kidneys were beginning to go out prior to tx. Here's an article I came across.
February 11, 2009
Son’s Kidney May Save Natalie Cole
Hepatitis C survivor Natalie Cole may receive a much needed kidney transplant from her son.
Natalie Cole's Son to Donate Kidney to Mom
BY: Actress Archives | Thursday, February 5, 2009
Proving that he's a son that really knows how to step up to the plate for his mom, it's been reported that Natalie Cole's son may give her one of his kidneys. Cole was diagnosed with Hepatitis C about a year ago and now it seems she might need a kidney transplant, which would finally put an end to the dialysis treatments she goes through three times a week.
Speaking to Entertainment Tonight at the Grammy Salute to Jazz on Tuesday (Cole is nominated for three Grammys for her 2008 album "Still Unforgettable") she said, "My son [Robert,] may be a possible match. It's very sweet and kind of strange to have people offer something like that." Cole explained that while does not look forward to the recuperation time she'll need to take after the surgery, "in the end it'll be worth it." Her son Robert is 31 years old.
In September of last year, Natalie Cole spoke openly about her struggle with Hepatitis C, which doctors told her she contracted from sharing needles in the eighties when she was a heroin addict. Shedding light on her new health routine, Cole said, "I give myself a weekly injection of chemotherapy in my thigh. When I started in May, I thought I was dying. I couldn't get out of bed for three weeks - literally. I was nauseous every day. I lost 15 pounds from not eating."
Upon learning about the illness, which remained dormant in her body for twenty-five years, Cole says, "My life crumbled before my eyes." She added, "I've learned a lot of lessons. Yes, I could have handled some things better. But they've also made me who I am today."
Cole's illness didn't stop her from touring the world last year. Said Cole, "I've never been through anything like this. I love what I do so much. I just keep going. Nothing can bring me down."
JT, I agree, she needs to keep in mind her bashing is going to cost more lives than it saves. In does cure 50% of type 1's, and 80-90% of type 2.3.and 4's.
What should she say then to those 900,000 out of a million that got cured with type 4?
Die of liver disease...don't take the medicine.
The Riba is a much bigger culprit of kidney issues than the INF. In fact one study showed much higher SVR's for those given increased riba dosing...but a 20% kidney failure at the higher dosages....so blaming the INF entirely is a mistake.
I watched my dad die while treating for INF. He was still a relatively young man with young children. No other treatment had helped anyone with his form of lymphoma.
Should he have not even tried?
Should all the people who have gotten free of a killer disease not have?
You know, life is scary, and it isn't always fair, but for me at least, I read what end stage liver disease was all about....and I watched a friend die of it.
Give me the INF any day over that. We pays our money, we takes our chances.
Even if someone means well...and I'm not saying Ms. Cole doesn't, does she realize she will create twice as many gullable fearful folks, rushing to spend hundreds each month on close to useless supplements because the cure can and does cause major problems for a few? The stats are than less than 1% have the major complications....minor ones abound but most clear up after tx...so right now boosting the body's own supply of natural interferon is still a key bullet in the arsenal.
Remember our bodies make this stuff anyway....that's why we feel so bad when we get a flu...because our spleen is making more INF's to fight it.
Let's be realistic in here. THIS viris....the HCV virus, is the only one in history, so far, that medicine has been able to find and actual cure for those already infected.!!!!!!!!
I'm not sure if Ms. Cole understands what a major medical milestone that is....defeating this insidiuos virus. In my mind we should be celebrating the millions of saved livers and restored lives, not belly aching because we suffered some reprocussions.
"she needs to keep in mind her bashing is going to cost more lives than it saves."
What nonsense! Natalie Cole is not a spokesperson for Hep C, nor does she have any responsibility to restrict her remarks to please anybody on this forum. I have noticed on this forum that people express their opinions freely, without reference to anybody else's sensibilities. Why on earth would Natalie Cole have any less right to free expression? She does not put herself forward as an expert on the subject, she is merely relating her experience.
I agree she is not the sharpest knife in the drawer. I also agree that her remarks are none too helpful, but all she is doing is expressing her personal views. It is a bit disingenuous to expect her to do otherwise. She does not need to keep ANYTHING mind for our approval. Like every other person, she can just say what she thinks.
"I agree she is not the sharpest knife in the drawer. I also agree that her remarks are none too helpful, but all she is doing is expressing her personal views. It is a bit disingenuous to expect her to do otherwise. She does not need to keep ANYTHING mind for our approval. Like every other person, she can just say what she thinks".
I totally agree with jdwithhcv on this subject and I've watched the broadcast on the link I am leaving. Also I went to pubmed, but I couldn't find anything related to interferon being an enemy to the kidneys. Still this is what she has been told and what she believes to be true, so maybe that's what it is. She says in her interview that she didn't have any problems with her kidneys prior to tx and 4months into tx bam! She was dx'ed as needing kidney dialysis, that is terrible. One other thing is, interferon is a drug that can be very hard on some ppl and there are ethnic differences as well. I don't think anyone can prove her wrong or absolutely right at this point. Next I would like to see her doctor on Larry King, but I doubt that will happen. good luck all
Well, I just watched the vid. She didn't sound particularly dull as far as celeb types go. The fashion guy who came on was obtuse to an extreme degree. Anyway, she doesn't claim to be sharp. I've listened to many politicians. . . and doctors who don't exactly dazzle me with brilliance.
Her knowledge of hep and SOC tx are on a level with people I know who have done tx. I know several who don't know their genos. They got through tx without learning how to read a CBC or metabolic panel.
I found her attitude to be refreshing. When asked what would happen if she doesn't get a transplant. . . her response was 'nothing.' She'll continue dialysis and sing and live her life.
Her comments about IF are ok with me. I talk trash on SOC anytime I feel like it. I guess my personal bias is against those who advocate or trash SOC who've never done it. They are talking about an idea or abstraction. The experience of doing 24 to 72 wks is not something that can be evaluated from the outside.
Natalie didn't make me want to go out and buy her CD, but her honesty did nothing to offend me.
I agree she is not a spokesperson for HVC (Thank God). On the other hand, she has HCV and had the opportunity to go on National Television and speak about it. I would say almost anyone on this forum would jump at the opportunity. She went there knowingly she would be speaking about HCV and was totally unprepared. She could have taken a little time to do at least a morsel of research. No she doesn’t owe us anything but she had an opportunity and blew it. I know we all have different opinions and here is mine. I watched the entire video and even if the HCV part was excluded, I would still find it nauseating at best.
>>>>>>>>>She could have taken a little time to do at least a morsel of research.
Frankly, that's the whole problem with giving podiums to Hollywood types.
They may be good at song, or memorizing lines, but that does not mean they do a centillia's worth of research before reaching the conclusions they draw, be they health, politics, or a whole host of other issues.
Yet they are constantly put up there as if.....as if they had professorial wisdom and knowledge. They do not. Having talent in one area does not necessarily translate to
wisdom or knowledge, or even common sense in any other arena.
I really don't want to drag this whole topic up again, but I will anyway: Did Natali Cole complete her treatment? What drugs was she taking? If so, is she maintaining SVR? Also, is it common and acceptable ti refer to SOC as chemo? Larry could have provided a more in depth interview...
I don't need a whole list of responses, but I couldn't find the answers anywhere. Maybe it's none of my business. Thanks.
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