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RESULTS
We got my husbands results. There is only a slight fatty liver. So, his liver is fine. Thank God for that. Now we're going to have to have further tests done to see why his platlets are so low. Could be lupus, his uncle has lupus. Could be itp or leukeimia.. Thank you all and let me know what you think. KIM
Neither is the biopsy and that is truly what he needs. Jim is right in my humble opinion - while a biopsy would provide the most clear information...if you could at LEAST get a Fibroscan while not as accurate you'd have SOME idea instead of using a 'best guest' approach.
According to my doctor with that approach I was perfectly fine with a great liver but as you can see at stage 3...was surely not.
It's not worth messing around.
According to my doctor with that approach I was perfectly fine with a great liver but as you can see at stage 3...was surely not.
It's not worth messing around.
You might want to check out other posts by Kimberlynn for more history on this as well.
He had an ultrasound back in nov. This time he had a cat scan. Is'nt a cat scan much better than an ultrasound?? Thanks Kim
Hi Kim,,,I don't want you to worry! You came here for support and not for more fear! I think NY and Jim summed it up very nicely. We all have some of the best drs around the country and so this is the real plus here,,,,getting the greatest advice from the best!! We are only sounding out what we feel or what doesn't seem right. And your dr could very well be right on target,,,,between cat scan and bloodwork,,,most of the time but not always,,,,a dr can make a pretty good educated guess as to the state of the liver. In your case,,,your post seems to say everything is ok,,,and no more worries but on otherhand,,,,I know you are interested in more input as you keep asking all the right questions and coming back so you are scared for your hubby,,,which of course is what anyone would be feeling but a call to your dr and you have all rights to ask him since no biopsy,,,why does he seem so sure that your husband's liver is fine because you have been doing your own research and found that might not always be the case. And of course,,,,2nd opinion would be great also! You have time to get everything together before you make hasty decisions. When my husband and I went through tx,,,we had to change up drs midstream,,,,We only wanted to do tx once and do it right so you can understand. I'm sorry if I got you all worried because that was not my intention!
Best Wishes!
Best Wishes!
If after the bone marrow, etc, the doctors still can't find out why your husband has low platelets, I have two suggestions:
(1) Ask for a transjugluar biopsy -- this is a type of biopsy often used when the patient has low platelets. And because they take a sample of the liver, it's the gold standard.
or
(2) Ask your medical team if they know of any (or have) a Fibroscan device. Fibroscan is a non-evasive biopsy, and while very new here, I believe some liver centers already have it or will have it soon.
If your current medical team won't do either "1" or "2" above, and they can't give you a satisfactory answer to his low platelets, I'd consider getting a second consulation from another liver specialist (hepatologist). In fact, if it were myself, I'd do that anyway because your husband's case does not seem standard and often two minds are better than one.
-- Jim
(1) Ask for a transjugluar biopsy -- this is a type of biopsy often used when the patient has low platelets. And because they take a sample of the liver, it's the gold standard.
or
(2) Ask your medical team if they know of any (or have) a Fibroscan device. Fibroscan is a non-evasive biopsy, and while very new here, I believe some liver centers already have it or will have it soon.
If your current medical team won't do either "1" or "2" above, and they can't give you a satisfactory answer to his low platelets, I'd consider getting a second consulation from another liver specialist (hepatologist). In fact, if it were myself, I'd do that anyway because your husband's case does not seem standard and often two minds are better than one.
-- Jim
I certainly hope that your positive outlook is a correct GUESS but really - that is all it is without a biopsy to determine grade and stage.
A cat scan will simply NOT reveal AT ALL what amount of fibrosis and liver damage have accumulated over the years. Fatty liver oftentimes comes from excessive drinking I believe - so it is a good guess that if drinking has caused that there is an awful lot of fibrosis in there too.
Nobody in here is trying to hurt your feelings they are just saying the same thing - what you are reporting simply doesn't make any sense. What they probably were inferring to you was that "there are no tumors or masses". The person who read my ultrasound told me my liver was FINE - that is what they meant. I was later SHOCKED OUT OF MY MIND to discover I was already STAGE THREE.
Fine to an ultrasound is a completely and totally different story - it means at present time he has not yet developed LIVER CANCER but it says absolutely NOTHING about not having advanced liver disease.
A cat scan will simply NOT reveal AT ALL what amount of fibrosis and liver damage have accumulated over the years. Fatty liver oftentimes comes from excessive drinking I believe - so it is a good guess that if drinking has caused that there is an awful lot of fibrosis in there too.
Nobody in here is trying to hurt your feelings they are just saying the same thing - what you are reporting simply doesn't make any sense. What they probably were inferring to you was that "there are no tumors or masses". The person who read my ultrasound told me my liver was FINE - that is what they meant. I was later SHOCKED OUT OF MY MIND to discover I was already STAGE THREE.
Fine to an ultrasound is a completely and totally different story - it means at present time he has not yet developed LIVER CANCER but it says absolutely NOTHING about not having advanced liver disease.
I don't understand that cuz the doc's office said his liver is fine. His doc is Dr. Jeffrey Crippon at Washington U/ Barnes Jewish hospital in St. Loius. I read up on him and he's one of the top ten in the United States for hep c and other liver diease. He said if the cat scan shows little or no damage which it did then we have to have further testing done, like the bone marrow biopsy. He drank that chalky stuff and the shot him full of dye. I thought it would be very accurate.. So, I guess I need to worry again??? Thank KIM BTW the doc said that if there was little to no damage then there is some other reason for his platlets being low.
you may be in denial concerning the hep C liver damage. like honey11 said, a CAT scan only shows cancer masses and gross enlargement of organs. the liver biopsy is the only was to assess liver damage at this point. good luck.
Has anyone else not been able to do a biopsy due to low platelets? Cat scan will show if there is severe damage or if the liver is enlarged but you could be stage 3 or beginning 4 and cat scan would not show that,,,,only biopsy would tell true state of liver. What about a fibroscan?
They did'nt do the biopsy, he had a cat scan. The doc would'nt do the biopsy cuz of low platelts. Now they are going to do a bone marrow biopsy. Thanks KIM BTW As far as I know he has only had hepc for about 7 years.
Oh Kim, I think you said you had only been married for eighteen months. I hope your road won't be too terribly difficult.
My very best to you both.
My very best to you both.
wait a second, i thought you posted your husband never got the biopsy because of low platelets? i remember you posted he wanted to get drunk the night before and you were going to have a few with him. so of course the doc did not give you a stage/grade because he never had the biopsy done! maybe you are talking about another test he had like an ultrasound, that can show fatty liver. without the biopsy there is NO way to know how much damage he has. and if god spared him with little damage now it wont be long with the drinking that he could be on the transplant list. i wish you both well. best of luck
The doc reported it only to me. There is really no liver dmage except just very mild fatty liver. I don't think there are stages or grades of that. I think it's just mild or severe. There are no more results just a bone marrow biopsy to come. Then we wait for those results to see if hubby has ITP, lupus or if it''s from drinking fatty liver is just deposits of fatty tissue in the liver. They have'nt scheduled the bone marrow biopsy yet. I don't think they are in any hurry Thats how I understood it anyway. It's a miracle that his liver is'nt damaged. I know it will get that way eventually if he does'nt quit drinking. Remember to that as far as I know he's only had hepc for 7 years. Most people don't know they have hepc for a much longer time 20 or 30 years at least., Anyway thats all I know. Thank You, KIM
What do you mean by 'no grade and stage yet '? Did the doc that that there were more results to be reported to you? Nd, did the doc provide the results to you AND huby, or to hubby only?
Hope for the best outlook on things for you and your hubby. Lupus could be a factor for that too. If it runs in the family gives him more of a chance for having it. You know, he will have to quit drinking for that too. Lupus will drain the hell out of him. Good that he is familiar with lupus though, if this is his problem at least he has been around someone with it and may learn from that person and have support from him.
Good Luck, keep your chin up, waiting is the hardest game of all.
Cajun
Good Luck, keep your chin up, waiting is the hardest game of all.
Cajun
No grade and stage yet just very mild fatty liver. Pretty much means his liver is fine. He probably won;t even need treatment yet. I doubt the doc would even want him to treat when his liver is ok. No he will not quit drinking. I hope thats the only reason his platlets are so low. Lupus does run in his family and he does have some of the same symptoms as his uncle does and he has lupus. Anyway thank you and I'll keep you all posted. KIM
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