Medical Forum / Diseases and Disorders / Hepatitis / October 2008
What my doctor said yesterday...
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Otis T. - 01 Oct 2008 14:54 GMT I went and saw my liver doctor yesterday and I did not feel so well when I left. He said that because of my morbid obesity he would not treat me as he felt I could not tolerate the treatment. Plus I have a cyst in my pancreas and he wants that looked at again. I cannot really read his handwriting, but what I have in my pancreas is called a mucinous cystic neoplasm or something like that. When I had it biospied at the University of Michigan Hospital in Ann Arbor a year ago, they did not seem too concerned. Yet, my liver doctor wants it to be looked at again.
He also says I have cirrhosis (as cyrotic liver as he called it). He said that does not necessarily mean a death sentence and many people go on to live normal lives, with it, for many years. Is that true? Also, he said that blood tests reveal all liver functions are normal. Of course, I am scared and concerned.
I do not drink alcohol. What other things can I do to please Mr. Liver as far as what not to eat, drink, or stuff like that. Also, would milk thistle be good to take?
Thanks in advance for your help.
Otis
Sara - 01 Oct 2008 16:30 GMT >I went and saw my liver doctor yesterday and I did not feel so well > when I left. He said that because of my morbid obesity he would not [quoted text clipped - 19 lines] > > Otis I think it's time to find a new doctor, Otis! Can I ask where you live that you are going to U of M hospital? Are you near Detroit? I was treated at Henry Ford Medical Center in downtown Detroit, and they have a great staff of doctors there if that's a possibility for you..... but I definitely would not continue to see a doctor with the attitude your guy has :(
Others will advise you better than I can as far as the cirrhosis and other things go. I do not understand how you can have cirrhosis though, and have normal liver functions. In the meantime, is it possible to start losing some weight? If you need a weight-loss buddy, let me know! I need to lose some too, maybe we can motivate each other :)) feel free to email me at bb at wowway dot com.
Sara
TX-012 - 01 Oct 2008 18:17 GMT > >I went and saw my liver doctor yesterday and I did not feel so well > > when I left. He said that because of my morbid obesity he would not [quoted text clipped - 21 lines] > > I think it's time to find a new doctor, Otis! What she said.
Yes, it would be helpful if you lost weight---overweight people do less well on treatment---but this is no reason to refuse to treat you, esp. if your liver is in less than perfect shape as it is.
You want to find an _experienced_ hepatologist who has treated many patients in all sorts of physical conditions; someone who will adjust the treatment (longer duration, higher dosages, Infergen, etc.) to help you reach an SVR if at all possible.
This may take a bit of work on your part. There are many wimpy, skittish doctors out there who are chickenshits when it comes to treating people with hep c.
There are also some real gems.
Find one of the gems.
dBo - 01 Oct 2008 21:17 GMT Can't blame you for feeling anxious and concerned. I too was found to have a pancreatic cyst during prelimanry testing prior to treatment. It was referred to a probable "pseudocyst" and determined to not be anything to be overly concerned about, tho they suggested follow up on it.
I had another ultrasound that said it was no longer showing up, then a second followup ultrasound, a year and a half post treatment, and that time they said they could see it again, but that there was no change from the original findings. Again, maybe not a big deal.
As previously stated, it does seem questionable that he would say you have cirrhosis when you have normal liver function... something doesn't sound right.
On the other hand, MY PCP assured me for 2-3 years that my "mildly elevated" liver enzymes were nothing to be concerned about, just As We Get Older, Fatty Liver sets in, I had gained some weight and blah blah blah - and HE was wrong as well, turned out I had HEP C, but he didnt' feel there was any reason to pursue further testing....so it just goes to show another example where one doctor can be wrong, and another opinion may be totally different.
I agree with the others suggesting you may want to consult another doctor. Too bad you aren't a beer drinker.... I lost the first 20 pounds fairly quickly once I quit drinking after diagnosis! haha!
Otis T. - 07 Oct 2008 22:08 GMT >Can't blame you for feeling anxious and concerned. I too was found to >have a pancreatic cyst during prelimanry testing prior to treatment. [quoted text clipped - 6 lines] >time they said they could see it again, but that there was no change >from the original findings. Again, maybe not a big deal. About a year ago, I was going to have my gall bladder removed and during an MRI, the found a mass in my pancreas. I ended up going to the University of Michigan Hospital in Ann Arbor, MI. and the did a EUS, going through the mouth. The found what they called a "cystic lesion with a mural nodule in the head of the pancreas. Endoscopic ultrasound with aspiration of fluid and characterization suggest that this probably represents a mucinous cystic neoplasm (MCN). Again, this was a year ago.
Last week, my local stomach doctor ordered some blood work and did a CA 19 9 and according to the information I got in the mail (copy of results) it says the ref. range should be between 0.0-35.0 and my result was 175.7 H. On another paper Authorization for insurance company, under Medical Description it says: 1st Diagnosis: 157.9 Malignant Neoplasm of Pancreas Part Unspecified. Again, these current tests were done by a local doctor at a Gastroenterology office. I will be again going to U of M for the EUS again.
On the insurance authorization form, is the diagnosis standard or can they tell just by the blood test that this neoplasm is cancerous?
Thanks, A very scared Otis
Otis T. - 02 Oct 2008 05:29 GMT >>I went and saw my liver doctor yesterday and I did not feel so well >> when I left. He said that because of my morbid obesity he would not [quoted text clipped - 22 lines] >I think it's time to find a new doctor, Otis! Can I ask where you live that >you are going to U of M hospital? I live near Toledo, Ohio. I am thinking of getting a second opinion.
Otis
Are you near Detroit? I was treated
>at Henry Ford Medical Center in downtown Detroit, and they have a great >staff of doctors there if that's a possibility for you..... [quoted text clipped - 9 lines] > >Sara Paul - 04 Oct 2008 06:07 GMT On Wed, 1 Oct 2008 11:30:17 -0400, "Sara" <puffler@wowway.com>, in message ID <fIMEk.303$G83.265@fe103.usenetserver.com>, in the newsgroup alt.support.hepatitis-c wrote:
>>I went and saw my liver doctor yesterday and I did not feel so well >> when I left. He said that because of my morbid obesity he would not [quoted text clipped - 21 lines] > >I think it's time to find a new doctor, Otis! I reckon you should go one further than that. Shoot the bastard.
Thip - 02 Oct 2008 00:01 GMT >I went and saw my liver doctor yesterday and I did not feel so well > when I left. He said that because of my morbid obesity he would not [quoted text clipped - 19 lines] > > Otis 1. Find another doctor 2. I've got cirrhosis with a vengeance and I ain't near ready to keel over (and will go out kicking and screaming when the time does come). I go to work every day, come home and play with my horse and my dogs and my grandkids, and in general enjoy myself. 3. Lose weight. Your body's got enough stress to deal with. Eat *sensibly*. Weight Watcher's is a good one to follow, but avoid iron. Drink water water and more water. 4. Find another doctor.
Good luck. :-)
Dwight - 02 Oct 2008 03:12 GMT >> I went and saw my liver doctor yesterday and I did not feel so well >> when I left. He said that because of my morbid obesity he would not [quoted text clipped - 31 lines] > > Good luck. :-) I agree with Thip, and am pretty much in the same place in my life as her, excluding the grandkids and horses. I do hope to have and enjoy grandkids in my future, but I don't have the room to keep a horse.
Dwight
chardonney9 - 02 Oct 2008 01:46 GMT > I do not drink alcohol. What other things can I do to please Mr. Liver > as far as what not to eat, drink, or stuff like that. Also, would milk > thistle be good to take? Yes, it would be a very good thing to take! Look at alpha lipoic acid and selenium too.
And I just lost 20lbs by cutting out more carbs from my diet. No starving, no counting, just losing. I stopped eating bread and stopped my tiny little bowl of ice cream.
Otis T. - 02 Oct 2008 05:38 GMT >> I do not drink alcohol. What other things can I do to please Mr. Liver >> as far as what not to eat, drink, or stuff like that. Also, would milk [quoted text clipped - 6 lines] >starving, no counting, just losing. I stopped eating bread and stopped >my tiny little bowl of ice cream. Friends, If anyone of you knows any sites that would list a good doctor in the Toledo, Ohio area, I would certainly be interested. I also will be checking here locally to see what I can find out. One thing I want to add about this "specialist", he told me about a year ago that as long as I got an "ok" from my eye doctor saying there are no problems, then he would treat me. Now he has changed his tune. Sadly, my BMI (body mass index) is about 70 as I way a little over 400 pounds. He said that if I got my BMI down to 30, he would treat me. I am 51 years old. I am going to try and drop some weight. Yes, I am going to try and find a good hematologist in my area. All I have thought about today is the cirrhosis and dying from it. I wish I could have one day to enjoy life, but it is just one worry after another.
Thanks, Otis
Otis T. - 02 Oct 2008 05:41 GMT >> I do not drink alcohol. What other things can I do to please Mr. Liver >> as far as what not to eat, drink, or stuff like that. Also, would milk [quoted text clipped - 6 lines] >starving, no counting, just losing. I stopped eating bread and stopped >my tiny little bowl of ice cream. This Gastrointonoligist or whatever they are called, ordered two other blood tests while I was there. I don't know what they were but he said he would send the results to me. How in the hell am I going to know, unless he indicates on it, what to make of it...
Also, is a gastrointonologist the same type of doctor as a hematologist?
Thanks, Otis
greyhackles - 02 Oct 2008 07:04 GMT >>> I do not drink alcohol. What other things can I do to please Mr. Liver >>> as far as what not to eat, drink, or stuff like that. Also, would milk [quoted text clipped - 17 lines] >Thanks, >Otis A gastroenterologist deals with the digestive system - the entire gastrointestinal tract, from mouth to anus - and the diseases thereof. A hematologist deals with the blood and blood-creating organs (eg: bone marrow) and related diseases. In practice, depending on the problem being treated, both types of specialists will often cross over in scope to the other realm, and indeed, it isn't clear if either type of doctor would have a significant advantage wrt treating HCV.
Many of us have a lot of first-hand practice in decoding blood tests, so feel free to post any test results you have questions about here.
I definitely agree with the other folks who recommend seeking another opinion. That said, however, the brutal truth of the matter is unless you can find a way to get your weight down, it is unlikely you'll find a responsible doctor that will recommend starting anti-HCV therapy.
You should try to get hooked up with a clinic that will help you with dietary guidance and get you started on an appropriate exercise regimen. The benefits of getting your weight down would manifold - not the least of which would be a positive effect on your liver condition...
/greyhackles
Waterspider - 02 Oct 2008 23:35 GMT >>> I do not drink alcohol. What other things can I do to please Mr. Liver >>> as far as what not to eat, drink, or stuff like that. Also, would milk [quoted text clipped - 17 lines] > Thanks, > Otis You may be thinking of a hepatologist; this is a gastroenterologist who specializes in liver disease.
greyhackles - 02 Oct 2008 23:52 GMT >>>> I do not drink alcohol. What other things can I do to please Mr. Liver >>>> as far as what not to eat, drink, or stuff like that. Also, would milk [quoted text clipped - 20 lines] >You may be thinking of a hepatologist; this is a gastroenterologist who >specializes in liver disease. Good catch, Spidey! I completely missed that possibility...
Cheers
/greyhackles
Kozure Ookami - 02 Oct 2008 11:58 GMT >I went and saw my liver doctor yesterday and I did not feel so well >when I left. He said that because of my morbid obesity he would not [quoted text clipped - 19 lines] > >Otis I would be thinking about a second opinion also. However, I would also be thinking about the more difficult prospect of serious weight loss. Obese people do worse with regard to successful treatments and obesity alone can damage the liver. And of course there's so much more than that.
I'm not sure what you mean by your doctor wanting to look at the MCN again but http://www.emedicine.com/radio/topic518.htm says there is a recent trend to resect all cystic neoplasms without attempts to preoperatively determine the exact histologic subtype. They are not good. So your doctor's statement would seem to make some sense to me.
What he said about cirrhosis is true. The key is not necessarily. Many people survive a long time with cirrhosis. Here again taking some of the burden of obesity off your body makes sense. It is possible that your liver function tests show normal although you have cirrhosis.
There is alot of information with regard to healthy eating and I would take this subject up with your doctor as well. Certainly some foods are worse than others but if you are "morbidly obese" this is no trivial matter. Some people take milk thistle around here. There are advocates and those who think it is a waste of time and money. I really don't know but think it probably wouldn't hurt.
Don
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